Out of Desperation

I tend to be a pretty laid back person. I usually try to see the good in people and assume the best about them. Rarely, very rarely, do people make me want to scream and cuss at them. But this week, it was literally all I could do to keep my choice words to myself. I am so incredibly frustrated and at the end of my rope. Why? Because my precious child is sick and no one seems to care.

Libby spent the first 20 minutes of her birthday party balling in the bathroom because she was in pain and just wanted to go home. I have had enough. I write this blog partly so I can vent, and partly out of desperation so that maybe someone will have a recommendation that I haven’t tried to help little Libby.

Here is the back story. About 2 1/2 years ago Libby started having abdominal pain. For several months, I wrote it off as nothing more than a signal that she had to go the bathroom. Then during the summer of 2009 I noticed that her belly was starting to stick out. We swam almost every day, and I thought she was just swallowing pool water. As she started Pre-K that fall, her symptoms seemed to get worse. She started having diarrhea relatively frequently, and I remember talking to her Pre-K teachers about the fact that she was using the bathroom lots. She also started complaining more frequently about her stomach hurting and I noticed the bloating becoming more noticeable as well. The amount of gas that was coming out of this small person was absolutely unbelievable. She was really starting to thin out all over her body and those little chubby cheeks had disappeared.

We started seeing a few alternative doctors, and I took her off of all dairy products. I spoke with her pediatrician about what was going on, and they ordered a stool sample and blood panel. I think they were looking for parasites in her stool and I’m not sure about her blood. Apparently the samples came back normal. We were then referred to a Pediatric GI specialist at Vanderbilt Children’s hospital but had to wait a little while before we could see her.

During that time, I started reading about Celiac Disease. Libby’s symptoms seemed identical to those of someone with Celiac so I removed gluten from her diet. Her pediatrician also ordered a blood test to check for Celiac Disease. It came back negative. The levels of the antibody they check for were normal.

Shortly after that, we had our appointment with the GI specialist. She took one look at Libby and said, “She is textbook Celiac.” I told her the blood results were negative, but she said the only way to be sure was through a biopsy of the small intestine via an endoscopy. I quickly agreed. The downside was that because Libby had been off of gluten, we had to wait 3 months to do the test. To get an accurate result she wanted her on an unrestricted diet for 3 months. So Libby was back to eating normally.

Three months went by, and we headed back to Vandy Children’s for the endoscopy. I was super optimistic that after a year of my precious baby suffering, we were finally going to have some answers. I was wrong. The biopsy results came back negative. The doctor was 100% sure that she did not have Celiac Disease. She said everything looked absolutely perfect. Her thought and unofficial diagnosis was that she was sucking up too much air when she drank and to have her drink out of a straw. Yes. You read that right. According to the Pediatric GI Doctor at Vanderbilt Children’s Hospital, the cause of her pain, diarrhea, bloating, gas, low weight, mucousy stools, etc was because she was drinking incorrectly. Umm…no. I don’t think so. She also said to have her drink Carnation Instant Breakfast three times a day to help her gain some weight. I asked her about a possible gluten sensitivity that was not technically Celiac. She said she had “heard” of people with gluten sensitivities, but didn’t have a test to diagnose that so she wasn’t really sure if it was legit or not. Ugh. I could write a whole blog post about that statement and how our healthcare is flawed, but I’ll save that. Anyway, she smiled, shook our hands, and went on her way.

She called about a week later to check on Libby. I kindly told her that I didn’t agree with her diagnosis. Her next recommendation was to give Libby Miralax for a certain amount of days to clean her system out and start over. Seriously? Did she miss the part about my daughter having chronic diarrhea? I was done…with her…the doctor.

I decided I was going to do all I could myself before ever taking Libby back to Vandy GI. I decided to homeschool her for kindergarten because I couldn’t imagine sending a child to school who was having diarrhea and massive amounts of gas about 6 times a day.

Over the past year we have seen about 6 alternative health practitioners, left our pediatrician and started going to a new family doctor, taken all gluten and dairy back out of her diet, added probiotics, digestive enzymes, and several other supplements, done two natural parasite cleanses, and just about anything possible that could be done. She eats very, very little processed food and mostly consumes organic items and free range chicken and grass fed beef.

There have been times when Libby seemed to get well. Her bloated stomach, which has become the most obvious indicator of how she is doing, became normal. Actually twice this has happened. For about a period of a month or two, I thought she was cured. At first, I thought one of the parasite cleanses did it, and then I thought it was the removal of gluten. She was even doing so well in December that my husband and I felt confident in sending her to school. We had been wanting to send the girls to school for several reasons, but knew we couldn’t do so if Libby was sick. Since she was doing so well, we put them in school after Christmas break.

All was going well for the first few weeks. Then, seemingly out of the blue, her problems reappeared, and with a vengeance. No other external factors have changed. I have been very careful to keep her diet the same, even while she is in school. I’m now wondering if those few months she was well even had anything to do with the changes with had made, practitioners we had seen, or supplements she had taken or was it just a coincidence.

I have decided to take her back to Vanderbilt GI because I feel like I am out of options. I have done TONS of research on the doctors there and sadly what I have found is not good. It seems it is common knowledge that the Pediatric GI Dept at Vanderbilt is referred to as  ”the black sheep of Vanderbilt Children’s Hospital.”  Not good. Definitely not good. Every single person I have spoken to, with the exception of someone I spoke to today, has given me the same recommendation of a doctor. They say everyone else isn’t worth seeing. So I have tried, and tried, and tried to get an appointment with that doctor with no success at all.

Even if I was willing to see another doctor in the clinic, it would be several months before they could get me in. My child is miserable. You might not know it unless you are her mom because she is brave and a fighter. She doesn’t complain very much, especially to those outside her family. She has learned to live with what is going on inside her. But I have to take care of her because she can’t take care of herself.

Her stomach the size of a basketball, her legs are like bird legs, she is 6 years old and weights 34 lbs, her stomach hurts, she has embarrassing gas that can be heard from the opposite side of the house, diahrrea, etc, etc, and they want to make her wait several months to see a doctor who we have heard not good things about. I’m not kidding you that if you could see my child naked she looks like the starving African children we have all seen in those horrific photos. Her stomach is HUGE! She needs to be seen soon! And by someone who really knows what they are doing.

After talking to a nurse from Vandy for the third time this week, I wanted to scream. The mama bear in me wanted to rip her head off. When I asked her what people do who have sick children who can’t wait, she just replied, “That is just was happens with specialists. The ER is always an option.” I was speechless. As I cried on the phone to her, she seemed only slightly moved. She will “try” to get me in sooner, she said. Trust me, I gave her an earful. The patient person that I have been was no more. I am doing everything I can to fight for me child.

I have also called Cincinnati Children’s Hospital where the #1 Pediatric GI Clinic is. They were incredibly kind and helpful. It was shocking to me how they even seemed to understand my urgency. I am seriously considering a trip there. I’ve also called our new doctor to enlist her help in getting me an appointment sooner at Vanderbilt.

Tonight was Libby’s birthday party. On the way to JumpZone, she started crying in the car saying her stomach hurt. It was the kind of cry that I don’t hear all that often. Even though she says her stomach hurts frequently, she rarely cries about it. However, it is seeming to get more frequent. This was the third time in the past 3 weeks she has gotten this way. She said she had to go the bathroom, BAD! I drove as fast as I safely could and rushed her into the bathroom right away. She sat there for about 10 minutes crying. She just wanted to go home and didn’t want her friends to see her unhappy. I tried to calm her and reassure that everything was going to be ok.

She eventually came out of the bathroom and sat on a bench. I could see that she was trying to be strong, but that she was also in a lot of pain. She kept grabbing her stomach. I just sat next to her and rubbed her back and welcomed her friends. We went back and forth to the bathroom for the next 10 minutes or so. Finally she said, “Mom, I think I have to throw up.” We ran to bathroom and I stood their holding her hair back and praying for her. After a few heaves, she let out the most gigantic burp. The word burp doesn’t even seem to do justice to the sound I heard, but I don’t know what else to call it. It was not a normal sound. She never really actually threw up any food. It was just air and spit that came out. I was familiar with this odd occurrence as this was the third time this has happened in 3 weeks. I thought the first 2 times were just weird flukes, but it seems this is becoming a more present symptom of what is going on.

After she did the big burp, she felt 10 times better and was able to go out and play with her friends. She was in the bathroom a few more times over the course of the party, but seemed to be enjoying herself. My heart just broke for her. This isn’t how life is supposed to be for a 6 year old. I started thinking about other parents who have children with chronic illnesses, many of them much worse than my daughter’s. I can’t imagine what that must be like. I’ve only had a little taste, and I feel like I’m going to explode. Having a hurting child and being powerless to help them has got to be one of the most miserable feelings possible.

I humbly ask that you pray for my sweet Libby and pray that God will give us wisdom where to go and what to do next. Please pray that someone, somewhere will be able to figure out what is wrong with her.

*I forgot to include that when Libby wakes up in the morning, her stomach is somewhat normal. It’s not always completely normal, but it is definitely the best it look all day. Within an hour or 2 after being awake, it begins to grow. Don’t know if that makes a difference or not, but just wanted to make sure I included that.

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  • Teasicannon

    Mindy, I will totally pray. I’m so sorry you’ve had to deal with all of this. Could it have anything to do with yeast? I’m not familiar with gluten free diets, but does that illiminate yeast, as well? Love you.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Yeast is a possibility. We did a second stool sample last week and are awaiting the results. It was a much more comprehensive analysis than the one we did before and one of the things it specifically looks for is yeast. I’m hoping we have the results back in a few days. Thanks for praying.

  • Mycupofgrace (Danaye Taylor)

    I can completely relate. Although my daughter is 17 now we started having health issues when she was 8 months old. Everything you described about trying to get good, knowledgeable treatment sounds so familiar. We sometimes joke now about the midnight drives to a hospital 3 hours from our house because that was where one of her specialists worked. Although we had the same doctors in our town we couldn’t receive decent treatment for her. I remember calling Riley hospital in tears one day, which is one of the top children’s hospitals we wre blessed to have here in Indiana. Then they would only take you with a referral from a PCP which we couldn’t get. After talking with them they ended up talking with a pediatrician there & called me back with the news this doctor would see her without the referral. She is still her pediatrician today. It’s so frustrating and becomes maddening when they treat you as though you don’t know your child and that something is wrong. I know when it came to our daughters stomach issued it went from Colic as a baby to Irritable Bowel Syndrome as a child. The biggest issue we found that either helped or made things worse was stress. We actually changed her from a private school to public school in 5th grade & that lowered her stress level so much her meds became an as needed treatment instead of continual. As for her ears & heart issues we dealt with those in the same manner looking until we found physicians that would work with us. I will be praying for you, her and the family as you continue your search for answers.

  • http://www.themindfulmama.com Pauline Magnusson

    Hopefully I’m not commenting twice; was trying to rock the baby and comment via iPhone and pushed something…and well…not sure where that comment went. :)

    But had tears in my eyes for both you and Libby as I read; how heartbreaking for you as her mama. Your description of Libby’s strength of character in dealing with it amazed me – isn’t it sometimes even tougher to watch our kids be so strong?

    I haven’t a clue about any of this, so I”ll assure you of our family’s prayers for Libby & you – for knowledge, wisdom, and healing of bodies and spirits. We’ll be praying for the doctor you eventually find, too, that s/he is just the right one to help in facilitating Libby’s healing.

    Prayers –
    Pauline

  • http://thedomesticexecutive.com Mindy Spradlin

    Thank you for your prayers. I think stress could be a factor, but I just don’t know how to lower her stress level. I don’t think it is very high, but she is definitely empathetic towards people and situations way beyond her years. Sometimes that’s not a good thing. Sweet girl.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you for your prayers Pauline.

  • Rashelle

    Mindy, my heart just breaks for you and sweet Libby. You are both warriors. I will be relentlessly praying that Libby will be healed. Libby is such A GIFT. I would have never known all that occurred tonight when we saw her. She is so brave!! I am praying for peace to rest over her precious body as this process of healing unfolds. We love you!!!!

  • Heather J

    My heart goes out to Libby, you, and all of your family. I will definitely keep you in my prayers.

  • Mishie42

    Hi Mindy,
    My heart aches for you and your family. My prayers go out to you all. I too was thinking it might be yeast. I went on a yeast free diet a year ago for strange symptoms and with all of my research this sounds VERY much like the adverse side effects of excessive yeast. Thanks for writing this blog as it may help another struggling mom dealing with the same thing.
    Hugs

  • http://www.thenourishednest.com Melissa Vines

    Praying for you and Libby! I can’t imagine how hard this must be for you. I hope you get some answers soon & Libby gets some relief.

  • Susan Gates

    Mindy,
    What a very frustrating and difficult thing for Libby and for all of you. I will be praying…. Love you guys.

  • Kinsfathers

    I will pray for her as well, and for you! It’s so good you were able to share what is on your heart, keeping things in only complicates things. -Liz K.

  • Andy Depuy

    Mindy
    What a wonderful mom you are. Praying that God will provide you with the right drs and that the drs will have a caring heart. Praying for a complete healing for Libby.

  • http://michaelhyatt.com Michael Hyatt

    The CEO in me wants to solve this problem … NOW. I am tweeting a link pronto. Surely, someone out there can help us. I love you and am praying for your and Libby.

  • http://twitter.com/SamPhysick Suzanne Physick

    I don’t know much about it and, reading the symptoms my first thought was ceoliacs (I have a gluten intolerance myself although, like Libby, I came off gluten before I was able to have a test and wasn’t willing to go back on it to be tested as it seemed to make such a big difference to my health) but has Irritable Bowel Syndrome been ruled out? They are quite similar symptoms and it looks like there could be medication which would help if you did get a diagnosis http://en.wikipedia.org/wiki/Irritable_bowel_syndrome

    Will keep you in prayer – must be awful watching your daughter go through such pain.

  • Gina

    Read Michael Hyatt’s tweet. Retweeted & posted and facebook. That canvases about 500 ppl, many of whom I am praying will retweet & repost. I am praying to the Lord for guidance, an understanding-passing peace, and healing.

  • Caryn Rivadeneira

    I RTed your dad’s tweet and got this from a friend: “Caryn, it sound like my friend’s daughters life before she found out she had Crohn’s. All her tests came back negative but she is being treated for Crohn’s with meds and it has worked. There is a excellant Dr they see at Bronson in K’zoo. If you friend wants more information let me know and I will give my friend’s number to you. It has been life changing for her daughter.”

    Praying for you and your girl.

  • http://www.madebymark.com Mark McElroy

    I’m not a doctor. I have no medical training. What follows is really even less of a guess than it is an expression of my desire to help you and your daughter.

    I know this sounds crazy … but has any doctor checked your daughter’s gall bladder function?

    I know, I know. Gall bladders are normally an issue for much older people. But as my own gall bladder failed over the past year, here were my symptoms: severe stomach pain with no discernible cause, massive and painful bloating, severe gas pains. I tried all the things you’ve tried: limiting gluten, cutting back on fat consumption, limiting dairy. None of these solutions worked. Worse, the onset of symptoms just seemed arbitrary — unrelated to diet or exercise levels or anything else.

    Only after a gall bladder attack did we confirm what was going on all along: stones in the gall bladder would periodically block the gall duct, particularly after fatty meals, causing terrible pain. After my recent surgery, I’m symptom free for the first time in a long time.

    I hesitate to suggest any further tests for your daughter, who has suffered so many for so long. But a painless sonogram could tell doctors whether she has stones, and a blood test for liver function could also yield insight into this.

    It’s way out there … but worth considering.

    Whatever the cause: I am praying for you and your daughter, and hoping you’ll find health and peace in days to come.

  • Tiphanie

    I have had te same problems. I’m 20 years old and last year I became 120 pounds which yes is a normal weight but I was 180 before. I lost 60 pounds in a month. I looked sick fir my height. The doctors could never tell me what was wrong and they still can’t. I had to just learn to live with it. I am still in pain especially when I eat. Some days are worse than others. And some days I just don’t want to move it hurts so bad. I couldn’t quit living though so I just pray all the time and do the best I can. I can not imagine a six year old going through this. I am so sorry and I’m praying that answers come your way. That God’s will be done an that Libby gets some peace.

  • misty

    I encourage you to take her to Cincinnati to the new Dr. Don’t waste more time at Vandy. I had several health issues as a child and it took a whole new set of doctors away from home to figure it out. My heart goes out to you as a mom. There is nothing more frustrating than seeing our children hurt and having no one seem to care.

  • Carolyn

    I have been through a very similar situation with my daughter who is now 19, but her problems started when she was 4. I know you have probably research EVerything as I did. But if you haven’t yet tried the GAPS DIET please get the books and try it. Dr Natasha cambell Mcbride is the dr behind it. Google it, you will find the info. There is also a new Facebook group. This is the A diet similar to other gluten free diets, but it actually heals the gut.

  • Jennifer

    At the risk of sounding unsympathetic – which I am definitely not – I’d just like to give you a bit of perspective from the nurse’s/secretary’s point of view.

    I have worked for a medical specialist in Arizona for ten years. I am daily haunted by the fact that I have to schedule people who are in terrible pain for appointments four and five months out. Scheduling is one small task of the many duties I perform, but it is the one I dislike the most.

    There have been days where I have ended a phone call sobbing, having just told a person the very first appointment I have available for them is five months away. This availability is an absolute fact. The doctor I work for is literally scheduled from 8 am to 5 pm every single day for the next five months. I schedule one hour for lunch; he eats for 15 minutes and then makes phone calls to patients. He has to do his daily hospital rounds on his “own time” outside of the 8 to 5 hours. He is on call two nights a week. And he is in private practice and has been in his field for 20 years; all of the doctors in the practice are similarly scheduled. Not long ago, I was listening to my third chewing-out of the day and told the patient on the other end of the phone that I would have to call her back the next day to get her scheduled – I couldn’t take being yelled at again that afternoon.

    Without knowing the person you spoke to about getting your daughter scheduled, I can almost assure you that she is in a spot very similar to the one I am in. When she says she will “try” to get your daughter in, she means it. She, as an employee, is almost as much of a victim of the system as you and your daughter are. I’m not sure that giving her an earful is appropriate, though I understand your frustration. I’m sure if you looked at the schedule she looks at everyday you would be baffled how the doctors see as many patients as they do.

    I sincerely hope that your daughter can get into Cincinnati Children’s and I pray that a doctor figures it out VERY soon. Please just remember that all of the other little people running the logistics of a medical practice really are trying to help too.

  • http://pollywogcreek.blogspot.com Patricia

    Mindy, my heart goes out to all of you.

    One of my sons has crohns, the same disease I have had since just before he was born, and my daughter also suffers from a yet undiagnosed intestinal disorder – but, though they were diagnosed as teens, both of them are now adults and neither of them were in as much distress as your Libby. I can only imagine your pain and frustration for her. Have the doctors considered inflammatory bowel disease (crohns or ulcerative colitis – it’s not the same as irritable bowel syndrome)? In addition to endoscopy, did Libby also have a colonoscopy?

    Speaking as both a patient and a retired RN, I would encourage you to do whatever you can to get a diagnosis, even if you have to travel to do so. Local physicians can oversee and manage Libby’s care after her diagnosis, but if a renown pediatric GI specialist can see her soon, that is what I would be inclined to do.

    Praying for you and your family and your precious Libby now, Mindy.

  • Kflotho

    Prayers will be flying for your precious Libby and your family. I am, as are two of my daughters, celiac. And while it sounds plausible there are too many variables for Libby… maybe gallbladder? Could it be an extreme case of IBS (irritable bowel syndrome), sometimes a hand-in-hand problem with gallbladder or gluten sensitivity? As another “Mama Bear” I certainly understand your pain, agony, and frustration with “health care professionals” who come up so very badly lacking. Once again, prayers and hugs!

  • http://gailbhyatt.wordpress.com/ Gail Hyatt

    I’m going to reply to your comment Caryn. (I’m sure Mindy’s still sleeping right now.) I’m Mindy’s mom.

    Thank you very much for your comment.

    We have a history of Crohn’s in our family. Mindy’s Uncle has it and two of Mindy’s four sisters have it. We are very familiar with Crohn’s symptoms and Crohn’s treatments. Libby hasn’t had a colonoscopy yet. And when she has one (the Ped. GI doc never ordered one) we’ll know more, however, her symptoms are not classic Crohn’s. Really the diarrhea is the only common symptom. But, we will definitely have her tested for this. Thank you.

  • http://twitter.com/awannabe_writer Alexa Muir

    Mindy, I found your story via Michael Hyatt’s twitter and am so moved by your daughter’s strength through all this as well as your own. I’m in Britain so our medical system is a bit different but I was wondering if you’ve had an x-ray done to check for any physical problems in the abdominal area? And has anyone considered Crohn’s disease as a possibility? A friend of mine has it and when I read how much pain Libby was in it reminded me of things she’s said about her condition. The bad news is it is a lifelong condition but it can be controlled and those with it can lead normal lives.

    I will have you and Libby in my thoughts and hope that you get some answers soon.

  • AMS

    Has she had a colonoscopy? If not, I think it sounds like she needs one. I know they looked at her small bowel but how about her large bowel/colon? Also with the burping she may need something like prevacid or Zantac for reflux (though that doesn’t sound like it is her only problem/diagnosis). Good luck with it! Prayers to all of you. A

  • Deneen

    first: go to Cinci. DO NOT WAIT. 2nd- Chrone’s Disease? I don’t know. not a medical person. but Cincinnatti is where you should go.

  • http://twitter.com/becomingjoyful Patti

    Reading your post gave ME a sense of urgency and I don’t even know you! I have little to offer, but I will offer what I have.

    Libby’s story reminded me so much of Jordan Rubin’s story. He wrote a book called The Maker’s Diet. I believe it ended up that he had Crohn’s disease. He has a website that may give you bit of his story. Also, we have a young friend who was diagnosed with Crohn’s when he was 9 or 10; he was literally wasting away. It was heartbreaking. Since diagnosis, with a diet change and medication, he has resumed a normal healthy life. You would never know to look at him now that he was so terribly ill.

    I pray that you will find new ideas to pursue, that Libby will get a break, and that you will have peace. And I would agree with Misty, go to Cincinnati if you can!

  • Angela

    Praying for your babygirl and your whole family. May God grant swift answers and relief.

  • http://rindywalton.com Rindy Walton

    Praying for you this morning…as a mom, I can only imagine what frustration you’re going through.
    I moved to Cincy 2 1/2yrs ago & although not with the GI dept, I’ve dealt with other departments & multiple office sites with my youngest son & I have all wonderful, excellent things to say about all the departments, doctors, nurses, surgical people, etc. & have some friends who work there too (and I’m in the medical field–PT). Yes, a trip is an inconvenience, but it may be well worth it.

  • http://www.jasperwalls.wordpress.com Melissa

    Before I got to the part about Celiac, I was thinking Celiac. My youngest son has a gluten senstivity….although he is tested for Celiac at Vandy yearly and it always comes back negative. I happened to have a friend with a child with Celiac (whose description was identical to that of your daughter) and so I learned some things from her. I would go to Cinci asap. I have known a few people in Nashville with children with gi issues who swear by Cinci.

  • CF

    I read about your daughter’s troubles on Mr. Hyatt’s Twitter page. I am most definitely going to pray for all of you. I have had IBS pretty much all my life, and it’s a horrible feeling for everyone involved. There is no physical abnormality to find with IBS, and there is no test they can run to confirm it. They can only run tests to rule out other conditions, such as Crohn’s or Inflammatory Bowel Syndrome. My food journal was instrumental in helping me get a diagnosis and move toward learning to control my IBS as much as possible.

    I agree with the previous posts. Please see the best GI possible, if traveling is what it takes. Please do not give up on finding help for your daughter. She is one blessed little girl to have you for her mom. I was 19 before I officially got a diagnosis. It was frustrating, but empowering to finally put a name to the problem.

    As I said, I will keep you all in my prayers. God bless!

  • Imtheauthor

    Has the child ever been on antibiotics? Maybe she should be checked for ‘c defficil’ or difficil. I could be spelling it wrong. It is an infection from the use of antibiotcs that kills of the good bacteria in the stomach and over takes it. A recommendation of daily pro biotics is what I have read about. A natural alternative for antibiotics is garlic.
    When my eldest was younger we had similar problems except the pain for her would be so bad you couldn’t entice her with any kind of food and we would end up in hospital. This began at age four.
    I started paying strict attention to when the symptoms started and realized it was during allergie season. I guess the build up of mucus and whatever would settle in stomach and we would end up getting antibiotics to clear her out. A vicious circle. I also agree with the stress thing mentioned in one answer..it took until my daughter was in the sixth grade to realize stress between being ill and dealing withschool was a factor. I opted for homeschooling and all seemed to clear. We have to realize kids are people and can worry just like us.
    Anyway best of luck and I’ll be praying.

  • http://onecurveatatime.com Chris R. Smith

    Tiphanie- Did you lose the weight because of bowel problems or were you throwing up? Or just not able to eat?

  • http://gailbhyatt.wordpress.com/ Gail Hyatt

    Mindy’s mom here:

    First of all, let me thank each of you for your concern, prayers and suggestions. I’m sure Mindy will find some VERY helpful comments here.

    Many of you are suggesting the possibility of Crohn’s. Here’s a part of the story that Mindy’s didn’t include:

    We have a history of Crohn’s in our family. Mindy’s Uncle has it and two of Mindy’s four sisters have it. We are very familiar with Crohn’s symptoms and Crohn’s treatments. That was the FIRST thing that we thought of. It was not where the doctors have gone … yet. We are also familiar with Jordin Rubin’s story, in fact we know him personally, though we have not had contact with him regarding Libby. Thomas Nelson published some of his books.

    Libby hasn’t had a colonoscopy yet. And when she has one (the Ped. GI doc never ordered one) we’ll know more, however, her symptoms are not classic Crohn’s. Really the diarrhea is the only common symptom. But, we will DEFINITELY have her tested for this.

  • http://gailbhyatt.wordpress.com/ Gail Hyatt

    Patti,

    I left a comment above about Crohn’s and Jordin Rubin. See above.

    Thank you very much for your concern.

  • http://rindywalton.com Rindy Walton

    btw–if you do make the trip, if you need anything, don’t hesitate to ask! Mom to Mom, sister to sister, I’m here! Praying for you all!

  • Anonymous

    What a horrible thing to go to as a parent, and I can only imagine how helpless you feel.

    My first thought was Crohn’s and this thing that happens with Crohn’s and other patients where there’s this overgrowth of bacteria in the small bowel — which would explain the excessive gas and belching. I have Crohn’s and have had the small bowel bacteria overgrowth. It was treated with a round of strong antibiotics.

    I have zero medical training, but I have a body I’ve learned to listen to quite well. My suggestions would be getting her to Cincy stat and asking them to do a Hydrogen Breath Test which will test for that bacteria overgrowth. The bacteria produces mass quantities of gas in the bowel in response to digesting sugars and yeasts.

    Also, keep a food journal. Record everything she eats AND how she feels 30 min after as well as 1-2 hours after. It’s a hassle doing it for myself, but after a few days (and more) I’m able to completely isolate problematic foods.

    Finally, Vemma. It’s multi-level marketing program with this amazing nutritional supplement. I’m not at all interested in the marketing/money making side of it, but the product has amazing anti-inflammatory agents and my body has been markedly different since I started taking it. I don’t sell it or have any interest in promoting it except for the remarkable differences I’ve noticed in my own body.

    Praying for healing in your dear one and in you and your family as the anxiety and fear in watching someone suffer can be overwhelming and heavy. Praying also for effective diagnosis and for a clear path to treatment for sweet Libby (including getting a dang appointment and not having to wait forever for it).

    In Him,
    Rachel

  • http://twitter.com/neavilag neavilag

    I came here from @michaelhyatt twitter, I am and live in Guatemala, Central America.

    After reading what Libby has been trough, It remember me what my daugther now 8 1/2 went trough when she started school. I am not a doctor, but many of what you said here happened to her, maybe not that severe, after looking for different doctors and all medication did not seem to did a change.

    Here is my point, and why I wanted to write: We noted she has more symptoms of what you say when she is on stress, it does not has to be a bad stress but thing that makes her nervous, for example: going to a party, doing something different from routine in general, before the event she is like in that stress, gas, fells nausea, stomach ache etc. Once is there she relax and enjoy is just this kind of situation. Sometimes is a night before of something, even something we know she is expecting, enjoys and is excited about. (sorry i am not native english speaking so I dont know using the correct word.) Have you noted something with that..

    Right now she is ok, she does take Ranitidine every night before bed, she says if for the “gas”, seem that make her feel well or maybe is just what she think.

    Her diet is not that severe but it normally food only made by my wife, she does not eat any “fast food”. She is doing ok and this is not an issue anymore on a daily basis. Maybe you have noted this on Libby, hope my story can give you a guide. Will ask my wife later, she still sleeping if she has another comment..

    BTw, why there is a long waiting time to appoint your girl? In my poor country down here, the health system is poor too but we can manage to have access to very good worldwide studied professionals relatively easy, and not have to be on a waiting list.. out of comment. just a doubt..

  • LifeVerse

    I saw something like this on the show Mystery Diagnosis” and as I recall, it was a rare liver disorder. The doctor treating the girl in the show ordered a rare liver test, and it was positive for this illness, easily treated once they diagnosed it. I don’t know what episode it was on. http://health.discovery.com/tv/mystery-diagnosis/

    Here is another site about rare liver disorders in kids:
    http://childrennetwork.org/about.html

    My nephew was diagnosed with Juvenile Diabetes at age 2, his only symptom is that he did not want to walk, he wanted to be carried everywhere. He was admitted to Childrens Hospital in a near coma and diagnosed with Type 1 diabetes.

  • http://www.kylechowning.com/ Kyle Chowning

    Oh man. I’m so sorry for lil’ Libby. I’ll be praying for you guys.

    My sister has medical condition that’s life threatening. As a point of reference, she only found the help she needed at UCLA in Los Angeles…a hospital that’s a good 15 hour drive away. Fortunately, once she got her full diagnosis, she’s able to do what she needs locally. I’d encourage you to really consider an alternative hospital…even if it’s for peace of mind.

    Godspeed. I’ll be praying.
    Kyle

  • Ruthchowdhury

    I am so frustrated for you. I will be praying for your daughter and for wisdom for you. I know you said you saw alternative doctors, so not sure if you’ve gone this route, but naturopath/chiropractor may help, plus Vitamin D seems to work “miracles” sometimes. I hope and pray you find answers soon & that your daughter is healed!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Dad. Love you too.

  • http://twitter.com/matias72 Jason Young

    First, as a medical professional, I want to apologize for the treatment you have received – This is not what atient care should be like!! As a Christian I am praying for you already and do have faith that He can heal. I am not sure where you live, but go to Cincinnati Children’s Hospital as soon as you can… The advise from the nurse about the ER might actually not be a bad idea in at Cincinnati – as a children’s hospital they might be able to start some diagnostics in the ER and might expedite getting to be seen by a Ped. GI specialist. I hope this helps and I hope Libby is healed.

  • Carrie S.

    Go to Cincy – I have a friend who takes her son there and she LOVES the staff there! They will do anything for your daughter that they can do ….

  • Janne

    I would highly recommend getting the book The Paleo Solution by Robb Wolf and start implementing a grain free (not just the gluten containing grains), legume free (including peanuts) and dairy free diet. Gluten is only one of the enemies in grains. All of them (as well as legumes) have tons of lectins and other problematic substances that can irritate the gut lining. She might also need to limit her consumption of nightshades (tomatoes, paprikas, eggplants, etc.) as well as eggs in the initial stages. You can find many resources to get started at robbwolf.com and thepaleodiet.com

  • http://onecurveatatime.com Chris R. Smith

    Mindy, first off we will be praying for you and your family intensely. My family is very experienced with GI problems from my grandmother down. Like everyone else some things that come to mind are Chrone’s, C-diff, gallbladder issues, a whole host of other inflammations from bacteria or fungus in the abdomen, IBS (which I have) etc, etc…. My sister has Gastroperesis (spelling? -her stomach doesn’t work and won’t pass food) We also go to Vanderbilt, as we live only an hour south. She’s had it since she was 15 (now 25). The Children’s GI dept is lacking there. But the good news in a way is that that’s the only thing we’ve found that is lacking. My parents and sister went through several PCP’s until they found Dr. Matthew S Miller. Dr. Miller is with internal disease and is also a ped’s Dr. Like everyone else, I would recommend going to C’natty. But be prepared because they may not be able to tell you anything either. We understand how frustrating that can be, even more so as a parent myself. I would also go see Dr. Miller also. He may not have the answers, but is seems to be good at pulling a team together and consulting with other Dr.’s and doesn’t seem to give up. After a host of Dr.’s he’s the one she’s kept the longest. His office number is 615-343-7584. Will be praying.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    IBS has not been ruled out. IBS can usually be greatly helped by diet so I’m thinking it’s not that, but obviously I’m not 100% sure. I am really fighting for a diagnosis that doesn’t mean medication for the rest of her life. The thought of that sounds like a nightmare and would most likely create other problems. I really want to find out WHY she is having these problems and fix the WHY. I don’t want to just treat the symptoms. Thank you so very much for your prayers. They are much appreciated!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Mark-Her gall bladder has not been tested, but you are about the third person to suggest that. I will definitely be mentioning that to whomever we see next. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Wow! Praying for you as well.

  • http://sheliamullican.com Shelia

    Mindy, I am so sorry. I know I would a thousand times rather be in pain myself than watch my children suffer. Libby is fortunate to have you as her advocate.

    This will probably sound like a frivolous suggestion, but I figure you are asking for everything, even the crazy stuff, right? My youngest son has had frequent stomach aches since he was little. Not nearly so severe as what you are dealing with. Our pediatrician, as a first step, suggested gradually but purposefully increasing his fiber intake. Because he is my one picky eater, this is a bit of a challenge. But, when we are conscientious about sticking with it, it is very helpful. Just a thought.

    I will be praying for Libby. And for her tiger mama. :)

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Carolyn-I have heard of the GAPS diet, but have not done it 100% with Libby. SHe mostly east fresh organic fruits and veggies and fresh meat from a local farm. I will look into it more and see what modifications we need to make.

  • Tg123108

    God is powerful! I will keep you and her and the Dr in my prayers. I say got to cincinatti. Also check out a rare disease called neiman pic disease that involves the liver and swollen distended stomach. I feel for you and her and will continue to pray that you get answers soon!

  • http://livingcanvas.wordpress.com/ AnnieLaurie

    Hi Mindy,

    I am terribly sorry for what Libby and your family are going through with this situation. I had a couple of thoughts to share, who knows maybe there will be answers here.

    One is that my husband has a severe sugar allergy. His body doesn’t produce sucrase that breaks down sucrose, its called Congenital Sucrase-Isomaltase Deficiency. Here is a description:

    “When sucrase isn’t secreted in the small intestine it’s called sucrose intolerance, or Congenital Sucrase-Isomaltase Deficiency. The result is excess gas production with diarrhea and malabsorption. Sucrase-Isomaltase Deficiency is a rare autosomal recessive disorder where there is complete absence of sucrase and most of the maltase digestive activity. It usually presents itself at weaning from breast milk when the infants are first exposed to the offending carbohydrates. When disaccharides and oligosaccharides are ingested, there is a failure to breakdown sucrose into fructose and glucose and the result in an osmotic-fermentative diarrhea. Occasionally patients won’t complain until late childhood or adulthood but a careful history usually indicates that symptoms have appeared earlier. The mainstay of treatment is dietary restriction of foods, which contain sucrose.”

    When I read your blog (which I found via Carlos Whittaker’s tweet) I immediately thought of what my husband has. So perhaps you could immediately remove all sugar if you have not already tried that. I saw where you removed dairy, my husband cant do dairy or ANY kind of sugar whatsoever or anything that breaks down into sugar (white carbs etc.). The good news is that, as an adult he has almost “grown out of it” but it still flares up occasionally esp. when he drinks a coke or eats too much pasta! As a child he was in the hospital ALL the time b/c it took doctors about 3 – 4 years to figure out what was going on with him (this was in the mid 70s) and his mom has shared similar stories to yours of shear frustration, anger and near defeat b/c of doctors failing to find the diagnosis for so many years. So perhaps eliminating sugar will lead to answers? Here is a link for more info from NIH http://ghr.nlm.nih.gov/condition/congenital-sucrase-isomaltase-deficiency

    Second, if you live in Nashville you may want to consider Le Bonheur Children’s Hospital in Memphis. http://www.lebonheur.org. I am originally from Memphis, and my friends & family who still live there say this is the best place for children with medical complications in Tennessee.

    Praying for you all during this time! Let us know how things progress!

    Blessings,
    AnnieLaurie Walters

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you for your comment Jennifer. I totally understand your perspective and that is one of the main reasons I have always done my very best to be kind to those on the other end of the phone. 9 times out of 10 they have no control. I hate that they have to be on the receiving end of desperate parents like me. Even in my desperation and freak out the other day with the nurse, I tried my best to not make it personal towards her. I think the thing that really got to me was that her tone was just one of complete unconcern. I’m sure it’s a protection mechanism so she doesn’t lose her mind. I can’t imagine how hard her job it.

    So what is one to do in my situation? It just doesn’t make sense why there aren’t more doctors there when there is obviously a need. I want to be kind and understanding, but I also know that waiting 5 months simply won’t work. I am also frustrated because it seems much of my problem is the fact that I am seeking a second opinion. I had a friend with a child that is a new patient call a few weeks ago and get an appointment with the doctor I am trying to see. Her appointment isn’t until September, but she actually got an appointment. I think that is why I it infuriates me when they tell me he can’t see me and isn’t taking new patients. I know for a fact that he is. But technically I’m seeking a second opinion so it puts me in a weird category. It’s just so frustrating.

    Again, thank you for your perspective. It is a good reminder.

  • Carolesturner

    My mother in law had a bacteria in her stomach that went undisgnosed for almost s year. She went from 160 to 112lbs and missed three months of work. She did as you, went everywhere she could for answers then finally went to Cleveland Clinic and she saw Dr. Steven Shay. He put her on a strict diet and on the medication Donparidone. She’s been on this for a year now and finally feeling better. She has to eat only certain foods ( no fruit or veg, she can ear bread, yogurt. Drinks lots of Ensure, etc) she still has set backs. But the bottom line was they had to run a stomach emptying test to diagnose it. She has gastroparesis which means paralisis of the stomach. I hope all this information helps. I pray you get answers and your daughter gets healing.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you for your prayers. They have not considered IBD. My family actually has a strong history of Chron’s, but Libby’s symptoms, other than the diarrhea, don’t really seem to match up. No one has ordered a colonoscopy for her. I’m hoping we can get one done soon.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    See my reply to another comment below about her gall bladder. Definitely something we will be looking into. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    See my reply to another comment below about her gall bladder. Definitely something we will be looking into. Thanks!

  • Mary S.

    I found a link to your daughter’s story on Twitter. I’m sending thoughts and prayers to your daughter. Her symptoms sound similar to what happened to me this spring/fall. I’m 24 and in May started having extreme stomach pain and would feel like I had to throw up. When I would go to throw up, sometimes it would just be gas from my stomach. My mom suspected it was my gallbladder because she had the same thing. Finally in October, it got so bad, I had to go to the emergency room and they scheduled surgery for me the next day. Since I’ve had my gallbladder out, my symptoms are gone. Doctors usually do a liver enzyme test to determine if there is a problem with the gallbladder. Mine didn’t show the typical results so they did an ultra sound to confirm the diagnosis. They can see the stones in the gallbladder and in the channel outside of it. It’s not typical for someone her age but it may be something to look at.

    I hope you get your answers soon so your little girl gets better.

  • http://helengullett.com/ HelenMG

    Hi Mindy,

    I got your website link from my husband and he read it from Michael Hyatt blog. I don’t have any idea about the situation you and your family are in, but I will be praying for you, your daughter, the whole family and the doctors, that God will guide and give wisdom to deal with this situation with your daughter and you will have the answer. Thank God for a great God who can heal and give comfort.

    Be blessed

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Alexa-Thanks for your concern. She has not had an x-ray and I’m hoping that will be one of the many things the new doctor will order. See my comment (and my mom’s comment) below on Crohn’s. Blessings to you in Britain.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    No colonoscopy yet. Hoping that will be one of the first things the new doc does. Thanks for you prayers.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Deneen. She my reply below (and my mom’s reply) to another comment about Crohn’s. Hopefully we’ll be going to Cinci soon!

  • http://gfmuse.blogspot.com Heather

    Mindy, I’m so sorry to read about the pain and challenges your daughter is facing. As an individual with Celiac Disease, I see doctors miss or ignore the signs even as they are crashing into them. And to me, it does sound like a textbook case of Celiac. I’m forwarding the link to this post to some parents of children who’ve had some similar medical troubles. I know only that biopsies and blood tests coming back negative does not always mean it isn’t Celiac or non-Celiac gluten sensitivity. Hopefully one of these other parents will be able to offer you some advice.

    In the meantime, have you tried acupuncture? I don’t know where you stand on alternative medicine, but I’ve had great relief since I began my treatments. My acupuncturist has been able to stimulate my liver and stomach so that they are getting stronger every day. I strongly recommend considering this as an additional therapy.

    You’ll get the answers you need. Libby is a lucky girl to have such a proactive and supportive team around her. She’ll be in my prayers as you move forward!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you so much Rindy. You may be hearing from me if we come your way!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    THanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    She has been on antibiotics twice in her life. Once when she was a baby and once recently for strep. She takes probiotics, a relatively high dose, already. I’ll mention this all to the doctor. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Mom.

  • carol1217

    This woman specializes in “medical mysteries”. Maybe she can help? http://www.gloriagilbere.com/

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank Rachel for your suggestions!

  • http://www.theproductivitymaven.com Tara Rodden Robinson

    Dear Mindy,

    So sad to hear of the difficulties Libby has been going through. While I don’t have anything to offer on what might be wrong, there is a treatment that you might want to look into: helminthic therapy: http://en.wikipedia.org/wiki/Helminthic_therapy. There is some evidence that suggests that lack of exposure to gut parasites may be to blame for autoimmune disorders like Crohn’s, ulcerative colitis, and the like. What you describe reminds me of those sorts of diseases.

    I am in prayer for you, Libby, and your family.

    With love,
    Tara

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks for you suggestions. I’m not totally sure why the wait is so long. I can only assume there aren’t enough doctors for the need. It doesn’t seem to really make sense to me.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Very interesting. I’ll check this out. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Kyle.

  • http://livingcanvas.wordpress.com/ AnnieLaurie

    One thing I forgot to add, the reason this is so difficult to diagnose is because its a problem with genes, you need a genetic specialist to handle a diagnosis of Congenital Sucrase-Isomaltase Deficiency. GI doctors may not identify it as a gene disorder which would cause a delayed diagnosis. I really hope this helps!

  • Ainsley

    I just got here via Twitter. I’m going to be praying for Libby and you. My heart breaks for you both. I have spent 6 yrs fighting for my 7 yr old’s health when drs couldn’t find a thing wrong with him. Different symptoms than Libby, but I am familiar with the feeling of desperation. We bounced around to a few alternative drs, and travelled quite a bit to see them. However, the one I finally found was the real gamechanger for my son. I don’t know where you live (I’m in va) but his clinic is in Roswell, GA: Dr Bergeron @ Advanced Medical Solutions, phone: (678)990-5401. I feel certain he could help Libby, but of course I don’t really know. If you are interested and want to call, I would get their email address and email this blog post to them, as a medical history of sorts. They will have dr. Bergeron read it before scheduling a consult. This is way longer than what I intended. If you want to talk to me or ask me any questions, please email me! Praying for your girl. -Ainsley

  • Lcondolora

    Hi, I was led here by your Dad’s tweet. My son had many stomach problems when he was very little, so I can relate to what you are going through. The GI we finally took him to here, did an endoscopy and on a whim did a biopsy and tested for H-Pylori. He was quite shocked when it came back positive, because it is rare in small children. My son was only 5 at the time. Anyway, it was easily cured with a combination of two different medications over a period of a few months. He is 25 now and has been fine ever since. He does also have some IBS, which he gets from me, but the pain, diarrhea, gas, and agony is gone. If they did not test your little one for H-Pylori, maybe they should. The most definitive test for it is a biopsy done through endoscopy. I will be praying for your daughter. Oh, and get het her to Cinncinnatti as soon as possible. I’d give up on Vanderbilt.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I’ll look into this. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    THanks Chris.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    THanks AnnieLaurie. Great suggestions.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Mary. Many have suggested the gallbladder might be the culprit. We’ll definitely be looking into that.

  • Zach from Cincinnati

    I was linked to your post via Michael Hyatt’s tweet. My wife is a medical researcher at Cincinnati Children’s Hospital in the prenatal group. CCHMC is an incredible medical institution, and I would highly recommend taking your daughter there. I will do my best to share your post with the doctors my wife and I know at CCHMC. Stop playing games with other hospitals and make the trip to Cincinnati!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Heather. We have tried acupuncture. We’ll probably be revisiting it again though.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Tara!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    THanks Ainsley!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you Zach! That would be wonderful if your wife could share with any doctors she knows.

  • Another frustrated Vandy mom

    Mindy I’m so very sorry for the frustration and pain you and your daughter are going through. I’ve been going through the same hell for quite a while with my child with Vanderbilt. They say that they can’t see you for weeks/months and then you go for the appt and the office is practically empty which is infuriating. I do have one tip if you want your daughter seen at Vanderbilt a bit sooner. ****Call and ask to speak with someone who advocates for the patient.*** They do have someone that will help get the system moving more smoothly just like the patient advocates for in patients. I last used this service after Dr. Arthur referred my child to adolescent medicine for treatment ASAP and a week later no one had made an appt. I asked for a patient advocate and got an appt same day…. and the appt was only a few days away. I wish I had known about this service earlier when my child had to wait for months for his first appt and was missing school due to the pain to the point of worries of truancy.

    Btw, my teen has been referred to a therapist to help learn breathing techniques, etc for dealing with “functional IBS” pain….. also taking a Zoloft type med… He’s always been a laid back, calm, happy child and doesn’t seem highly stressed to anyone who has met him…. very hard to put all the pieces together.

    One more thing… I had a HORRIBLE experience with the Mitral Valve Prolapse Center in Birmingham. We were referred there from Vanderbilt to supposedly treat abnormal stress response that could be causing the IBS symptoms. I called begging for help about 6 weeks after the first appt when my son was having a particularly bad day (month actually) and they dropped him like a hot potato. Said I should take him to a local doc.. perhaps he has appendicitis. You can imagine how shocked and infuriated I was when they said a child with a chronic illness they were thrilled to treat the month before (for a $1,000 fee of course) now had acute appendicitis and was no longer treatable by them…….. hog wash. They left him on heart meds (no heart problems, this was an attempt to lower stress/adrenaline) unsupervised for weeks while we waited for a Vanderbilt doc to wean him off what the Birmingham doc put him on.

  • Toni

    I read about your daughter through a link from Caryn Dahlstrand Rivadeneira on facebook. My now 14-year old daughter had very similar problems and was diagnosed with Crohn’s when she was almost 11 years old. Her crohn’s is not a typical case, but the meds she’s on have helped SO MUCH. We’ve found that diet changes have helped her a lot also even though the blood allergy tests were negative. Our GI doctor is at Arkansas Children’s Hospital. There is also a very good GI program at the Cleveland Clinic, I’ve heard. My recommendation would be for you to feed her ‘whatever works’ and find a different GI doctor. **A diagnosis of crohn’s would require both a colonoscopy and endoscopy. If your dr only did the endoscopy, she likely could have missed signs of crohn’s in the rest of her GI tract.
    You may already know this, but http://www.ccfa.org is a website with a lot of information on digestive diseases.
    I will pray for your family as I know this affects you all.

  • Juliedumond

    Oh Mindy I am so sad and sorry for you. actually Dr. Moulton told us the same thing about Diahrrea. it can be caused by constipation. Jared does a regular cleansing now with miralax.
    I like you read everything and I too, had the same thoughts as did our pediatrician.
    If you are really being moved to go to Cincinnati I say go. Has anyone suggested anywhere else?
    I will continue to pray for Libby and if you want Jared could would talk to her as he has great empathy for her and maybe she wouldn’t feel so alone?

    I know when Jared is really stressed- it would increase the incidence of his stomach problems. It was evident after his diagnosis of IBS. He changed his diet (tweeked it) no diary …and he eats small meals only.
    The doctors told us his stress didn’t cause his stomach trouble but it certainly impacted it.
    He started talking with a counselor for over a year ..now he doesn’t anymore.

    Did anyone do a barium swallow on Libby?
    did they do an endoscopy to look at her esophagus, stomach, deuodenum, and a bit of the illium? Jared had that done at the same time of his colonoscopy.

    This is a far reach but has anyone tested her for cystic fibrosis..they are known to have stomach trouble and trouble gaining weight (poor digestion due to lack of enzymes from the pancreas) and really foul smelly mucusy stools. It is a real stretch and I doubt that is it.
    The test is easy and painless..they place some gauze and heat a spot on the arm to collect sweat and test it for salt content. CF kids have more then normal salt in their sweat.
    I doubt this is it because she has no lung involvement and I truly don’t mean to scare you but it is a grasp at straws so to speak.

    You are so right to be a mamma bear- Working at Children’s hospital in Arkansas – they get respect even if they drive doctors crazy. YOU KNOW YOUR CHILD BETTER THEN ANYONE! that was our motto at ACH- parents know their children better then any of us healthgivers and parents are totally in the picture for the care of their child while there.

    I know your frustration and I pray with you and for you for little Libby.

    Julie

  • Carol

    I am so sorry for the pain she is enduring and I know how difficult it is as a Mom to watch your child suffer. May you find an answer quickly. I will be praying.

    Two things came to mind when I read your blog. Is she off all artificial sweeteners? They can cause some very difficult symptoms.

    I have been dealing with a life threatening situation for about a year now. I have been going to Progressive Medical Center in Atlanta. They are a wonderful group of MDs and NDs and many of their staff have specialties in various areas. They have helped me tremendously. They have also helped many other people with all kinds of problems…many of which the doctors had no cure for. Most of the staff are Christians and they even play Christan music. It is a very peaceful and healing place. http://progressivemedicalcenter.com/ If you would like to ask me more questions, please email me at joysong7@gmail.com

  • Jeanna

    I can tell by your tenacity that you will do everything you can to make sure you get an accurate diagnosis and treatment for your daughter. She’s lucky to have a mom who cares enough to make sure she gets well.

    My current doctor and my children’s pediatrician both say that the accuracy of the intestinal biopsy to confirm celiac disease is questionable after any period of time off gluten, even if gluten is re-introduced prior to biopsy. It takes years of gluten intake to flatten the villi in the small intestine, so the idea that it would take just 12 weeks to replicate that damage to a point that it would give a definitive biopsy result is flawed at best. As someone who went through multiple doctors, tests, a Hodgkins scare, and a lot of suffering on my way to my eventual celiac disease diagnosis, I understand to some extent what you are going through, though I would have been infinitely more upset about it had it been one of my children suffering instead of me. A lot of children with celiac disease have other food allergies as well (dairy, corn, soy, nuts, etc.) that complicate things. If she did better without gluten in her diet, I would keep her off of it, and I’d remove all of the main allergens for about two weeks and then introduce them back in one at a time and keep track of her reactions. It’s not the most expedient approach but I think it would give you some answers. Forget the doctors if you have to–they don’t know how your daughter is suffering, and they don’t have to go through the heartbreak of watching her suffer every day.

    I’m praying for your family, and I hope you get answers soon. Hang in there.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Great information. THanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Toni. We’ll be looking into Crohn’s but it doesn’t seem likely. See my mom’s comment on this page about that. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Interesting about the Mirilax. I’m about 99.9% though that LIbby is not constipated. She has not done a barium swallow or been tested for cystic fibrosis. Two things to add to the list. Thanks! I appreciate your prayers!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Carol-She does not eat any artificial sweeteners. SHe doesn’t even eat much sugar. Mostly raw honey if we need to sweeten something. I’ll check into the place in Atlanta. Sounds interesting. Thanks!

  • http://alexspeaks.com Alex Humphrey

    I have no answers, but I will be continually praying for your daughter and yourself

  • Karen H

    Hello, as so many others were, I am here because of your dad’s tweet. The symptoms might be consistent with something called Hirschsprung’s Disease. HD is the absence of ganglion cells. These cells are what cause involuntary movement (peristalisis) and run the length of the GI track beginning in the esophagus down thru the rectum. They migrate down in a spiraling pattern during the first 12 -15 weeks of gestation. At the point they stop, the bowel loses the ability to push waste thru and out of the body. If a short segment is affected, it is possible that children will have bowel movements even though a classic symptom in newborns is the absence of any.

    Both my daughter and myself have been diagnosed with HD. Most of the time it is diagnosed within the first few days after birth, but children with a very short segment of the bowel affected are not diagnosed until later – ages 6 – 9. Symptoms include abdominal distention and explosive diarrhea. A simple x-ray can tell if there are any dialated loops of bowel. From there, a barium enema picture can show a little more clearly if there is cause for concern re: HD. The only definitive diagnosis is by biopsy.

    Even having the disease myself, I had to fight to have my daughter tested because she continued to have bowel movements. It was later explained to me that the back up of stool can cause enough pressure to force out what appears to be a “normal” bowel movement.

    There are some great HD docs out there. We use a practice in Atlanta, GA at Children’s Healthcare of Atlanta.

  • Anonymous

    Hi Mindy:
    I join the many others praying for you & Libby. Many possibilities for her symptoms come to mind. Quite a few have already been mentioned.
    I just wanted to tell you that there is an amazing GI doctor at St. Thomas Hospital. Though not a children’s doctor we is by far one of the most caring doctors I’ve met. His name is Dr. Mertz. Unless you have made a plan for Cincinnati already it might be worth checking him out.

  • http://thewabisabi.me Jen C

    I’m sorry for all of the pain, trouble, dead ends, restarts and just general insecurity. I’ll pray that you can get some good help swiftly for your beautiful little girl.

    I also wanted to encourage you to continue to follow that mommy instinct. If you think the best place to take your child is Cincinnatti, the GO. Make an appointment, schedule travel arrangements, and GO. But trust your mommy instinct.

    The last thing I was going to tell you is that I used to have stomach aches and make frequent trips to the bathroom starting in kindergarten. My mom tried lots of things, but it turns out that mine was anxiety related. My symptoms were somewhat different than the description you’re giving, but since you haven’t seemed to find what causes her to improve or worsen, I wanted to mention my anxiety troubles. I didn’t know if maybe stress or anxiety would trigger her upset stomach and the rest of the symptoms kicked in after the initial upset.

    I have no idea if that is helpful, but don’t be afraid to do what you think needs to be done. Praying for your family.

  • Candysargent

    We watch the series Mystery Diagnosis n many of the cases hv the frustration level before breakthrough which usually comes from seeing a doctor who does a gene work-up n finds the problem. However, there was an episode with similar symptoms where the valve leading to the gallbladder had a problem resulting in a backup; a simple surgery rectified it. Unfortunately, before they found the real reason, doctors removed her gallbladder and then her appendix, hoping each was the culprit but they weren’t. Not until they went to yet another doctor in yet another hospital did they find out the valve was the real problem.

    We love alternative medicine; in fact, Dr. Oz has gone almost completely in that direction ..love when he has guest panels with a renowned m.d., alternative & expert in Chinese medicine. However, I think yours may be beyond that..I’d probably look into genes or valve leading to gallbladder.

    Prayers are with you.

  • Eskrima2

    I saw an episode on Mystery Diagnoses that show a very young child with problems like you are describing. After a DNA test…they found that the large intestine did not have a gene in the bottom part that would help to push the waste out of the body. (trying to be delicate) He would have problems just like your granddaughter.
    I can not find that episode, but I remember it very well. Maybe a DNA test will give you answers and relief for that child.

  • ERNurse

    I’m a former ER nurse. Go to the ER. They can do several things. First get a lot of tests that the doctors will need. Second they can get you in faster to the specialist. I promise. :) You’ll be in my thoughts

  • Michelle Williams

    Many years ago, I became very ill with a mystery illness. The doctor’s kept telling me that it was simply anxiety and no one took me seriously for nearly 2 years. A friend of mine who is a pain management therapist gave me some advice that I’m going to give you: You are the bus driver. You KNOW something is wrong. Trust your intuition. If a particular doctor or clinic isn’t listening, taking you seriously, or getting to an answer, obviously, they aren’t going your direction. It’s time to stop trying to make them believe you and put them off the bus. No hard feelings, no bitterness. Just realize they aren’t going where you are going and put them off the bus. Then, with your destination in mind, you drive as far as it takes, call as often as you have to, stay on the new doctors until…

    This is your bus. You are the driver. You do what you need to do and if a nearby doctor doesn’t see things your way, don’t even stop to argue, just keep going. There IS an answer to this. It CAN be found. Don’t wait to be fit in, just keep going to different places until you get your answer.

    This advice saved me. I hope it encourages you to not be passive or patient in finding this answer.

  • Wendy

    FIND A NEW GI Doctor!!!! Make sure she is tested for h. pylori, cystic fibrosis(this causes nucousy stool even in the mildest cases) & chronic appendicitis. Talk to Molly about the chronic appendicitis symptoms. Very much like Libby’s. SHe had it removed and symptoms disappeared.

  • Matt

    Mindy,
    I’m sorry for the pain that Libby’s illness has caused you and your family. My son recently had his second open-heart surgery. During our first hospital stay, my wife and I had similar frustrations with our son’s doctors when trying to diagnose a blood sugar disorder. It makes you feel like you’re losing your mind. 

    No other person will understand exactly what you’re going through, and in that, you are not alone. I have a friend who has spoken a lot of simple truth to me in my struggles; he has taught me to cling to the promises. In his words, “God will help.” He may not bail you out, but he’ll see you through.

    Matt Hammitt

  • Charity

    This is Chris’ sister. I can’t count the number of doctors I’ve gone through. First doctor I saw at Vandy was Dr. Arthur, and I have no good words about her. She said it was stress or an eating disorder and sent me to the adolescet doctors who did way more for me then she could. Even after we had a diagnosis and we had done the test more then once, she still said it was stress or eating bisorder. She sent me to Mayo clinic. They also confermed thay I had gastroparesis. The week after coming home, while inpatient at vandy she got the notes from Mayo, and had her nurse call my room(couldn’t be troubled to come by or call herself) and told my mom that since there is no good treatment for what I have, and no cure, that I didn’t need to see her again, we assured her we wouldn’t come back to see her ever. I went through all the peds gi doc there during different hospital stays, and the only one that ever did anything was Dr. Acura. When I graduated from childrens to adult I switched from the adolescent team to Dr. Miller, and really like him, and he really cares and does all he can to help.
    I pray you can get answers and soon. It is so hard not knowing what the problem is and not knowing what to do.

  • Amandaherrold

    I have a grown friend with cystic fibrosis and she has very similar stomach issues. Sometimes she looks 6 months pregnant. What happens is that the mucous builds up clogging the intestines. She had to have some of hers removed, but then the scar tissue builds up and causes the same problem. She has to drink go lightly every single day. If she allows herself to get backed up she is in severe pain and ends up in the hospital.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Jeanna-I’ve heard that about the biopsy as well. Hmm… I originally thought gluten was definitely the culprit. Now I am not so sure. She has been solidly off of gluten for several months and has not really improved. I’m thinking something else is going on or it is a combination of things. Thanks for your prayers!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I’ll definitely look into this. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    My experience is the regular GI doctors won’t see children. I have tried a few in the area already with no success. Do you know if he will see children?

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Many have suggested the gall bladder. It’s first on my list to ask our new doc about.

  • Catherine Kayse

    Poor little girl. Try this: http://www.doterra.com/us/. There’s an oil blend called DigestZen. It is all natural, so even if it doesn’t solve her problem it won’t have any side-effects. It helped my infant nephew’s acid reflux, another relative’s IBS and a friend’s constipation. I use it for general stomach upset from anxiety. One tiny drop rubbed into the belly does the trick.
    I feel like God gave us essential oils to heal our ailments. In the mean time, I’ll be praying for your girl.
    Bless you.

  • http://twitter.com/Nicole_M_White Nicole White

    I feel for you. I’ve had two children with stomach problems. One was related to dairy. The other baffled us for years. The pain, gas and diarrhea was not as sever as Libby’s but it was interfering with daily life. I don’t see any mention of a simple CT scan being done. They finally did that with my son and found he was terribly constipated, up into his intestines. Like your daughter he was thin, bloated etc. A long course of using the Mirilax helped. A few months later we had to do the treatment again but it’s been two years now and everything is fine. Like Libby he eats well, natural, lots of fruit and veggies, whole grains so it wasn’t a dietary issue, just a blockage. A good sign of blockage is diarrhea, the fluid will seep around the mass. I’ll pray for your sweet girl. With my oldest (who has the dairy issues) I even had the head of pediatrics tell me, “kids just get stomachaches, she’ll have to live with it.”- arrrg! I hope a solution is found soon.

  • Javier

    I’m praying for Libby and your family. As someone with crohn’s who went years without a proper diagnosis, I can somewhat understand your frustration. I would suggest that you schedule a colonoscopy as soon as possible. It could very well be an inflammatory bowel disease but without some of the textbook symptoms or possibly two things going on at once

  • Kj

    Please get your daughter to Cincinnati asap. If they are willing to do anything to help, that sounds like the place you need to go. In the mean time, if you believe God can perform miracles, I will tell you about the miracle God performed in my body. I used to have similar symptoms associated with lactose intolerance & was taking 16 pills per day to handle a “normal” diet. I read the book “Hung by the Tongue” by Francis P. Martin on the way to a prayer service a few states away from our home. I received healing & revelation that living the way I was & spending money on that much medication was not God’s best for my life & I refused to live that way anymore. That was over 13 years ago & I can eat any dairy products I want without pills or pain or digestive problems. “…for I am the Lord that healeth thee.” Ex 15:26
    I pray you & your daughter experience a breakthrough & she is healed, whole & normal in Jesus’ name!

  • http://fromtheunknown.wordpress.com Terry Lange

    Cincinnati Childrens is a great hospital. They provided great care for my wife who had fetal surgery while pregnant with twins because of TTFS. I would highly recommend them!

  • Jordyn

    So sorry to hear of your little ones pain and your frustration at trying to get help. I have a special needs son who was born with an incredibly rare syndrome so I know of the frustrations that you are experiencing while dealing with the medical field. My question is:- Has anyone suggested that she might be lactose intolerant? Symptoms include abdominal bloating, abdominal pain, diarrhea and in some cases….excessive amounts of gas. Keep in mind that if you are getting absolutely no help from one hospital, it’s time to move on and find a hospital that is capable and willing to help your daughter.

  • Susan

    We have friends with two children who both inherited some kind of major digestive disorder. They finally went to CCH and received wonderful help and care. They were both in their mid-teens when they were treated. Now a few years later they are doing so much better and the older one is even engaged to be married! From all I have witnessed, Cincinnati is the place to go.

  • Kelly from Atlanta

    Hi Mindy,

    First of all, I am praying for your precious child to be healed and for you to get answers!

    Second, my family has experienced stomach issues for many years. I have celiac disease as do both of my children. Both of my nephews have something called Hereditary Fructosemia, which is an allergy to fructose. My younger nephew has a more severe case of it and almost died. The only doctor who was able to diagnose him correctly was a pediatric GI doctor in Jackson, Mississippi. (of all places!) His name is Dr. Paul Parker.

    Also, have you considered the Mayo Clinic? My mom was told she had fibromyalgia for 7 years until several days at the Mayo Clinic in Jacksonville, FL revealed she has multiple sclerosis. The good thing about Mayo is that they do every test you need within 1-2 days and then you get the results right away.

    Praying! ~~Kelly

  • Carolyn

    Mindy, the key to this diet seems to be the bone broth as a healing agent to the gut, as well as sticking to it exactly for a pretty long time. Most people do not do the diet well until they are completely desperate. We have not done the diet completely, partly because we were not desperate enough. BUT, I have read about it extensively and recommened it to others.. there is a download of a long talk Dr. Natasha did on the Weston Price.org website that is very helpful..
    Praying for you.. I know the pain of being told over and over there is nothing wrong or nothing more to do and your daughter is in pain..My daughter went through everything Childrens Hospital could do for her here including upper and lower GIs. I found the most helpful things after they said there is nothing more to do, through the natural routes. The GAPS seems to be the best for actually healing the gut for good..

  • Kasey

    Hi Mindy,
    I sooo feel your pain. I’m a mom and my 3 yo son has had extreme GI problems since he was 3 wks old. After 32 different doctors, countless stays in the hospital, watching him waste away to practically nothing, I have some thoughts for you. The mucous is a huge clue. It’s not normal and it means there’s inflammation in the GI tract, which isn’t always seen with a colonoscopy. Find a doctor who will run ESR & CBC blood tests (if they haven’t already). She should also have a Calprotectin text (stool sample checking for specific inflammation markers). It sounds like they may have done this already, but test her for parasites, E Coli, C Diff, Giardia, Salmonella, Shigella, Campylobacter and Beta Strep (all stool samples). There’s something called a Prometheus Serum 7 test that looks at antibodies that are consistent with Crohn’s disease (that one is a blood test).
    But in the meantime, this is what I wish I would’ve done earlier with my son and it would’ve saved him from indescribable amounts of pain. Finally after every other treatment failed, we had to take him off food completely and do something called a “gut rest” diet. The idea is that you give the gut time to rest and heal by not demanding that it digest food. There are two products out there, one is called Elecare and the other is called Neocate Splash. They are liquid supplements (like the Carnation instant breakfast), but they are “predigested”. They are broken down so that the body doesn’t have to do any digesting, only absorbing. For children, it’s critical that they are able to absorb enough nutrition to keep weight on and get the nutrition that they need to grow. My son was profoundly malnourished because he couldn’t absorb what we were feeding them. I know that it’s tough with kids and food issues, and I’m not suggesting that you take her off food entirely, but maybe you could replace one or two meals, or just supplement to keep weight on her. Maybe that will help.
    My son was eventually diagnosed with Crohn’s, though we have no family history, don’t fit the ethnic profile and his symptoms started too “early to be Crohn’s”… that was the only thing left after 2 years of hell. He’s on medication that helps manage his symptoms, and he’s able to eat a handful of things now. The other thing that I’ve noticed with him is that he seems to have a fructose sensitivity. Some people have an inability to break down fructose and it causes a lot of GI distress. Fructose is in everything, and sweetness isn’t a good indicator of how much fructose a food has (for instance onions have a lot of fructose.) There’s an interesting article about that here… http://www.healthhype.com/fructose-malabsorption-cause-symptoms-and-diagnosis.html
    Like I said, I feel your pain and you’ll definitely be in my thoughts and prayers. Watching your child suffer is a very specific kind of torture.
    Good Luck,
    Kasey

  • Mb

    I was linked to your post and I am so sorry to hear of the pain your daughter is going through. I am praying for her right now – that she would be fully healed. I am going to also link this to my networks…

  • http://twitter.com/maenche maenche

    Hello Mindy. You may or may not remember me but my wife and I have friends (the Mahys) that go to church with you. We even met one time at Grace Chapel not too long after we both started Twittering. Just trying to give you a point of reference. Our family is praying for you, Nathan, Libby and the rest of the family. I pray that the Lord would give you strength and wisdom.

    Only thing I thought of while reading your post is a yeast overgrowth/candida. My wife had some unusual symptoms in the 90s that couldn’t be diagnosed. At that time there was a doctor in Birmingham that was revolutionary in the alternative/natural power of the body to heal itself. Any way, she had a yeast overgrowth. My understanding is that a yeast overgrowth can cause all kinds of weird symptoms and most doctors don’t consider it a “real” problem any way.

    I did some quick Google’ing and found that there can be some links between celiac and yeast overgrowths. I am not sure that this is helpful because I know Libby has been tested for celiac. I did see that you are waiting on some results related to yeast.

    I felt it was important to at least throw this out to you. Given that you have done so much research and looked at natural remedies/diets I understand that you may have already consider this possibility.

    I pray for the wisdom of God to be upon you, your family, and the new doctor that you go see.

    Blessings!

    Mark

  • Lynne

    You’ve been more than patient with Vanderbilt. Please follow your instincts and do NOT go back. Cincinnati, Atlanta Children’s–anywhere else.

    As a mother of 4, I certainly understand that you are now in “mother bear” mode. It’s exhausting to have to advocate 24/7 for a sick child. Eventually, you want to just about kill someone.

    God is more than able and he is with you throughout this ordeal. Just listen for the quiet voice and he will guide you.

  • Tscheer

    Hello Mindy,

    I saw Shaun’s post and as a Father with three boys it breaks my heart. I will get the msg out to as many people on social media networks as I can. Others viewing this thread, please help Mindy get this out to as many as YOU can! Let’s put the power of social media to work right now! Prayers and blessings to your family. God Bless.

  • Sarahbeth1983

    Mindy-
    I am not sure if this is what Libby is suffering from, but I went through a lot of the same pain as her a as young child. I was in so much pain I spent the first act of a Broadway show in the bathroom. I was stick thin and bloated often, so bloated I often skipped events and painfully had to stay in bed ‘s during friend’s parties. It turns out that my bloating and pain was being caused by Anxiety. Google “Functional abdominal pain” or “anxiety in children bloating.” I pray Libby will start feeling better and she will get to enjoy her Birthday party next year with no pain! :)

    “Functional abdominal pain — Some children have symptoms that do not fit the definition of organic disorders, functional dyspepsia, IBS or abdominal migraine. In this case, the child might be described as having functional abdominal pain. The symptoms can be so severe that the child is frequently absent from school or unable to participate in activities.

    The pain may be difficult to describe and locate.
    It is usually unrelated to meals, activity, or bowel movements
    The pain may occur with other symptoms, such as nausea, dizziness, headache, and fatigue.
    Pain typically lasts less than one hour
    Most children do not have problems with growth, weight loss, fever, rash, joint pain or swelling.
    Many children with functional abdominal pain have a family history of digestive problems.
    Functional abdominal pain is often triggered by stress or anxiety. This can happen during periods of change or stress in families (such as the birth of a new sibling, family member’s illness), when the parent(s) has limited time to spend with their child. Starting school may also trigger recurrent abdominal pain. In some cases, a child can develop chronic abdominal pain related to his or her need for attention.

    Your response to your child’s pain can reinforce the child’s behavior. For example, if you show that you are worried about your child’s pain, the child may become more anxious, and the pain may worsen. If instead, you pay attention to the child’s other activities, this might satisfy the child’s need for attention and reduce the child’s abdominal pain.”

    Source:
    http://www.uptodate.com/contents/patient-information-chronic-abdominal-pain-in-children-and-adolescents

  • Danielle Valle

    Hi found your post from your dad’s tweet. First, let me say that I’m praying for you and your little one. Nothing is worse than when your child is suffering. My doctor’s wife was suffering with chronic diarrhea and stomach pain that got progressively worse over a few years. Even with diet of rice and water, it continued. Out of desperation for answers and a means to help her, my doctor learned a technique for testing and eliminating allergies that literally saved her life. She is healthy and eats a non-restricted diet today. It is a very different way of thinking about allergies than we do in the West. It is called Nambudripad’s Allergy Elimination Technique (NAET). She has a book called “Say Good-bye to Children’s Allergies”. You can also do a search for a practitioner in your area. I certainly don’t know if food sensitivities or allergies are what your daughter is experiencing, but the testing simple (I’m warning you, it sounds really strange), PAINLESS, and I have seen people restored to health through treatment. I hope that God guides your search. Praying for strength and peace and full healing.

  • Susan Wilkinson

    Mindy, I’m so sorry. I am praying for Libby now.

    Couple of things:

    1. I wanted to confirm and commend you in your mothering, particularly your own efforts for Libby’s health. Your sense of responsibility to understand, to be proactive and to be responsible is admirable and an excellent example. Ditto your advocacy for Libby in the medical community. Too many do not see the faults in our health care system and blindly move forward with, or even give up because of, whatever nonsense the doctor may tell them. So, thank you for this demonstration of wisdom to the world. (And bravo for healthy grass fed meat, probiotics, etc.)

    2. My son had belly episodes for over 5 years. Tons of appointments, tests, missed school and PAIN. Finally, out of desperation, I took him to the ER–DURING AN EPISODE. When I went for regular appointments he was not usually actively, visibly suffering and I think it was much easier for the docs to just do the tests and move me through the herd with a cattle prod of, “Tests are normal. Sorry.” When he was in their emergency room, with a heart rate so high from the pain that they were worried about him having a stroke (at 12!) he finally got their full attention and concern.

    He also got relief from the pain of that episode and the right tests to get a correct diagnosis. He had intense belly pain, but the problem was in his kidney. Corrective surgery fixed him up, but it took 5 years and loss of 66% of his kidney function on one side for that to be discovered. I’m very grateful I took him to the ER that day so someone could see his pain. It gave me power to demand that they do EVERYTHING possible to diagnose him. Mama Bear’s teeth seem more frightening when the cub is moaning close by, n’est pas?

    3. My suggestion for the ER is because they have a sense of urgency to diagnose and treat correctly. They are more motivated for various reasons. If that doesn’t work or you’d rather not try it you could also consider hiring a Medical Diagnostician. That may be the specialist you need, vs a GI doc. I kept taking my son to GI docs, but he really needed a Nephrologist. Libby’s issue does appear to be GI, but it could be something else entirely, like a blood issue that affects her GI tract.

    Prayers.
    Susan Wilkinson

    p.s. I love medical research and I believe you and I share the same paradigm on medical/health issues. If I can help with research, please let me know. I know how many hours it takes to sort through it all and it would be my pleasure to help.

  • RickC

    Given some of the the symptoms you listed and your daughter’s age it is unlikely Hirschsprung’s Disease is the issue with your daughter however given the nauture of the disease and some similarities of symptoms with HD you listed it may be worth the effort to investigate this possibility. HD is usually seen and diagnosed in infants but can be seen in younger children. If it turns out that HD is the process in play you, your daughter and your family have a long road in front of you. The treatment for this disease process is surgery.

    Prayers for your daughter and your family.

  • http://rindywalton.com Rindy Walton

    Absolutely!

  • abby p

    Above all, it’s important for you to know that I am praying and an advocate for “sticking up” for our kids even if it makes us as mothers look “crazy” or “mean”. I highly recommend second opinions and going to Cinci. I work for Vandy, love Vandy! And they, of course, are an excellent institution but as Christians we, of all of people, know that the entire place is made up of and run by, well…..sinners just like the rest of us – so they are not the be-all end-all of pediatric care. Reach out somewhere else.

    Mindy, please forgive me I did not have a chance to read all the comments below so I apologize in advance if I am mentioning things that have already been brought up. The first thing that comes to mind is Hirshsprung’s Disease. Then a few other secondary things come to mind. 1. Second opinion on Celiac’s and a test for this later in life (while treating it as Celiac’s), 2. exacerbation of her symptoms in social and anxious situations (i.e. birthday parties, school. etc) even though she enjoys things like this; 3. an allergy that has been undiagnosed; 4. testing for some sort of rare genetic anomaly or syndrome (this is a stretch, but worth looking into) 5. You have probably already been to her but a visit to T.I. Bishop at her wellness/wholeness center.

  • abby p

    OOPS thought of one more thing: Gall Bladder? Ok I will stop now.

  • http://www.leighattawaywilcox.com Leigh A. Wilcox

    There is nothing worse than having a child suffering and no one in the medical community able or willing to help! I’m so sorry your journey (and Libby’s) has been so painful and challenging.

    One of my friends forwarded your post along to me…(and I haven’t read all of the comments, so please forgive me if I’m repeating what others have already shared.)

    Much of what you describe happens to a lot of children with Autism Spectrum Disorders, but I have a feeling you’re likely well aware and have probably run into a fair share of parents raising children with ASD as you’ve embarked on the GFCF + organic diet! If not, I know you would find many a kindred spirits in the Mamas raising kids with ASD – we never give up, but we sure hit many a brick walls in seeking help (especially medical help) for our kiddos. I wonder if you might find useful information (and/or leads for doctors and/or nutritionists) in some of my favorite books?

    Healing the New Childhood Epidemics by Dr. Kenneth Bock: http://www.amazon.com/Healing-New-Childhood-Epidemics-Groundbreaking/dp/0345494512/ref=sr_1_1?ie=UTF8&s=books&qid=1300556853&sr=1-1

    Nourishing Hope by Julie Matthews: http://www.amazon.com/Nourishing-Hope-Autism-Julie-Matthews/dp/0981655807/ref=sr_1_3?ie=UTF8&s=books&qid=1300556853&sr=1-3

    Children with Starving Brains by Dr. Jacquelyn McCandless: http://www.amazon.com/Children-Starving-Brains-Treatment-Spectrum/dp/1883647177/ref=pd_sim_b_3

    Eating for Autism by Elizabeth Strickland: http://www.amazon.com/Eating-Autism-10-Step-Nutrition-Aspergers/dp/0738212431/ref=sr_1_1?ie=UTF8&s=books&qid=1300557116&sr=1-1

    And, I also like Judy Converse’s books about Nutrition/Medication, etc.: http://www.amazon.com/Judy-Converse/e/B001JRV21Y/ref=sr_tc_2_0?qid=1300557183&sr=1-2-ent

    There are, of course more books I could recommend, but maybe one or two of these could be helpful to you right now (even though they have “Autism” in the title, I think much of the information you could glean from them regarding special diets and food-related illness would be worth looking past the titles!)

    Also, sometimes a skilled nutritionist can help you problem solve more than any “doctor” could dream of. Since Libby feels best (and “looks” best – I.e. a smaller stomach) when there is no food in her belly, I would strongly encourage you to seek the advice and help of a skilled nutritionist willing to think outside of the box!

    While it seems like you’re already looking anywhere and everywhere you can to find help, I encourage you to continue! Network with other die-hard parents fighting daily to ensure their children’s health and well-being and know that you are not alone. Ask them for recommendations for healthcare providers (GI docs are fine and good, but obviously don’t have all of the answers).

    You and Libby will be in my thoughts and prayers. I’d love to connect and hear how things progress (and potentially even help you connect with other Mamas working as hard as you are to help their children be healthy, happy and enjoy life).

  • Jillboyd81

    Our daughter was diagnosed with cystic fibrosis at 2 weeks old. Without medication – her digestive system doesn’t work well. Food goes straight through her, and she wouldn’t put on weight.
    Mucousy stools is a common thing and I can relate to the stick out tummy look with her as well.

    Could be totally unrelatsd but just though I’d join the discussion. Follow Shaun King on twitter

  • http://hthr.wordpress.com/ Heather

    Mindy, A mothers intuition is like none other and placed in us by our Heavenly Father! I am so sorry your family is going through this… DO NOT give up pursuing a solution!

    Our Avery had emergency gastro surgery at 11 days old after the nurses kept putting me off when I was calling with concerns. One even told me “I didn’t know what spit up looked like”. Ultimately, at our post up check up, the surgeon told us that Avery would not have made it had we not been so persistent. We lived in Atlanta at the time & the surgeon was George Raschbaum, a doctor with PASA. I think they are strictly a surgical group, but I wanted to pass that on to you anyway as it always helps to have a group of contacts & suggestions for research. I’m praying for your sweet Libby, and for you & Nathan.

  • Divinecyndi

    Children’s Hospital of Philadelphia is one of the top hospitals in the world, call them & see if you can get a consult. Praying for Libby…

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I took her off of dairy a few months ago to see if she was possibly lactose intolerant. It didn’t seem to help, but I still have her off of dairy. Thanks though.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I have thought about the Mayo Clinic. Definitely keeping it as an option. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Great suggestions. Thanks!

  • Cdmeadors

    Mindy, I follow your dad on twitter and his blog. My family and I live in West Chester, OH. We are just north of Cincinnati. Children’s is a wonderful hospital. There is also a wonderful Ronald McDonald house there. If you want to make the trip here you can check out the Ronald house because it will be so convenient, but if you cannot get in we have an extra bedroom and you are welcome to stay with us as our guest. @cdmeadors.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Hey Mark-I do remember meeting you at Grace. I have heard about yeast causing all sorts of problems. We just did a new stool sample the week before last and are awaiting the results. One of the things they are looking for is yeast. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Sounds very interesting. I’ll check it out.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Wow! Thanks for sharing. I’ll seriously be considering the ER.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    THanks for the suggestions. We have been to TI Bishop twice. Love her. She said she thought it was parasites and we did a parasite cleanse with her twice. At first I thought she got much better, but then her symptoms returned. I’ll check out all the other things you suggested. THanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you so much Leigh for the book recommendations. I have found much comfort from friends in the ASD community. I’m so grateful! The odd thing is that whether there is food in her stomach or not, it gets big. She wakes up with it smaller, but within an hour or two, whether she eats or not, it starts to get bigger. So weird. I really like our new family doctor and will probably be going to them again this week to discuss more things. THey seem like really want to find the problem and are good at thinking outside the box. Thanks again!

  • Jerry

    what a heart-breaking story! our daughter has suffered from digestive tract disorders for most of her life. one suggestion i would make is for you to seek out a naturopathic doctor. they have many more tests than traditional MDs. one of those tests might unlock your daughter’s puzzle! may God grant you His wisdom in this matter!

  • Arubajan05

    I also follow Michael Hyatt and found your blog that way. GO TO CINCY CHILDRENS!
    I lived in Cincinnati for 18 years ( when my children were young) They are amazing there! They diagnosed a rare infection my daughter had a 3 weeks. I will pray for your daughter and for you!
    ((hugs))

  • Arubajan05

    I also follow Michael Hyatt and found your blog that way. GO TO CINCY CHILDRENS!
    I lived in Cincinnati for 18 years ( when my children were young) They are amazing there! They diagnosed a rare infection my daughter had a 3 weeks. I will pray for your daughter and for you!
    ((hugs))

  • ACF

    Read this after linking to it from your dad. I’m reluctant to even comment because what I’m pointing you to sounds a bit, well, kookie. But it’s the kind of thing that, were I desperate, I would probably try. So I feel like I ought to at least mention it to you. Honestly, the only reason I myself might give this some credence is because of the experience of some good friends whom I trust. I’d say this would probably be more of a help than a cure. So…

    How’s that for an intro?!? Anyway, have you ever heard of alkalized water? I am totally unqualified to explain anything about it but would point you to a friend’s blog. It has helped their family with some health issues (though these are not on the same level as your daughter’s).

    http://myheartsdoor.blogspot.com/2011/01/alkalize-or-diewell-not-really-but-sort.html

    Anyway… I trust you know that there is a Great Physician who is very well aware of what is going on and, more importantly, who has a purpose and a plan in it… for your ultimate good.

  • Anonymous

    I’m not sure. They have a website nashvillegi(dot)com. His name is Dr. Harold Mertz. It might be worth it to make contact with them. He is one of the top GI doctors in the state.
    Prayers continue to go up for you that God will lead you to help. Also for Libby’s healing.

  • http://www.godsabsolutelove.com Patricia Zell

    Mindy, most of what has been suggested has been about the physical end of what has been happening. I’d like to share some “spiritual” actions that may help Libby.

    First, Isaiah 54:13 promises that our children will be taught of the Lord and great will be their peace. I hold onto this verse and I frequently speak it aloud. This verse helps me to remember God is faithful.

    Second, if you have time, your family might find help and hope by finding scriptures that talk about healing, copying them down, and reading them one or more times a day. When my children were young, I quoted several of those to them on a daily basis.

    Third, you might want to annoint Libby with oil on a daily basis (as led by the Lord). This annointing is not for trying to persuade God to heal Libbby, but to build Libby’s faith that God is with her and will help her. We usually annoint on the right hand as a sign of the authority of Christ (and us) sitting on the right hand of God.

    Fourth, take time to help Libby laugh. I know it’s hard to laugh when pain is so blatant, but the scripture does say that a cheerful heart doeth good like a medicine.

    Now, a word of encouragement to you–God is a very present help in time of trouble. He will give the knowledge, understanding, and wisdom you need to solve this mystery. Like many others, I’m asking Him to open doors for you and Libby.

  • Bethredman

    I am so sorry to read all that your precious, brave daughter is going through.
    As I read I could not believe the similarities betweenwhat your daughter is going through and what my son has gone through. He had all the same symptoms (down to vomiting burps) and ended up at 30lbs and misdiagnosed with celiac, lactose intolerant etc but still the issues went on. Long story short my husband got on his knees and felt it was a parasite that was causing our sons suffering; many types are hard to trace and therefore go undiagnosed. After 3 tests which we paid for privately we found out he had GIARDIA. He suffered everyday for 7mths and after diagnosis and medication he was restored.
    I pray for a diagnosis & full restoration and loving caring support all around you. My heart was breaking as I was reading. I pray this information may help and I send love from our family to your’s. We ask the God of all wisdom to lead you to a breakthrough imminently.
    Beth & Matt Redman UK

  • http://www.smoaksignal.com Jeff Smoak

    Not to add any fear, but it sounds like similar symptoms to some kids we know that have mitochondrial disorders. Our daughter had Battens disease which is actually the opposite of a mitochondrial disorder. But she had a period of time where she was unable to process food (she was tube fed at that point) and we had a hard time getting the air out of her stomach. I honestly think you should look beyond GI and consider neurology. Sometimes that can give clues GI won’t look for. You are in my prayers and you can learn more about our struggles at our website.

  • Jeff Smoak

    also consider seeing Genetics, as they will be helpful in connecting symptoms to conditions GI won’t think of.

  • Wanda

    Hi, I am so sorry for what your little girl is going through. I would say send your story to Dr. Oz. If anyone can get the correct treatment for her, I know he could. You never know but maybe your desperation will catch their attention. Hope you find an answer soon. Praying for her, Wanda

  • Adelharper

    Please try chiropractic…

  • Veronica

    My father-in-law finally got a correct diagnosis at an Er. His regular physician was narrow minded and attempted to treat him for a medical condition that he thought was the culprit because my father-in-law wouldn’t have a recommended surgery (which he didn’t need). So the doctor overlooked the cancer growing in him. My husband made him go the ER because he seemed to be worsening and we wanted to know what exactly the problem was. We did, unfortunately it wasn’t what we wanted to hear. So the ER can be a very viable option. Your family is in my thoughts. Hope to hear soon that you found the solution.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Jerry-The new family doctor we are going to practices both conventional and alternative medicine. He is an MD, but totally thinks out of the box. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks so much!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I actually recently started learning about as our new family doctor has info about it in his office. They actually have the water there that they will give you for free if you bring a bottle. I need to look into it more, but I guess I might as well try it, especially since it won’t me anything. THanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Wonderful suggestions. Thank you.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Beth-Thanks for you comment. How did you go about diagnosing the Giardia? I have felt it was a parasite all along, but her stool samples have come back negative. We just did another stool sample and I am awaiting the results. I was planning on asking her regular doctor to go ahead and treat her regardless of the results, but don’t know if they will do that. I have also heard parasites can be difficult to diagnose. What type of medication did they administer? What it your child’s regular doctor that prescribed it? I’m so glad your son is feeling better!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Hopefully in Cincinnati we will able to see several departments if needed. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I actually sent an email there yesterday. You never know I suppose. :)

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    We have an are actually going to a new chiropractor next week. ThankS!

  • Kj

    Just an FYI, Dr. Oz is a Muslim & he promotes New Age “spiritual” rituals.

  • Barbara

    I’ve only perused the comments but will give 2 bits, possibly already covered. I think your daughter’s problems are an emergency – so the idea of an ER visit does not seem too odd to me and yes, I would go to another town with a better-reputation medical institution. No.matter.the.cause – she also has all the symptoms of starvation. What ER would not immediately start her on iv supplementation until a diagnosis is confirmed?

  • Emily M

    I was directed to your post through twitter, as so many other people seem to have been as well. I cannot begin to imagine the frustration you are experiencing and have been praying for you and Libby since I read your post.
    As a mother of a little girl born with some fairly serious challenges, I completely identify with the need to understand what is going on in your child’s body and finding someone with the same sense of urgency to help her. I skimmed over the comments and it seems like you have gotten some great advice. Cincinnati Children’s Hospital has an amazing reputation and would be such a blessing for you and Libby. We commute 3 1/2 hours from our home to Arkansas Children’s Hospital frequently and it is totally worth it. I would drive to the ends of the earth for my little girl to be seen by her doctors at ACH. I pray you find the same thing wherever you end up with Libby.
    I have no medical advice or ideas for you, but one suggestion. Similar to those who have said to take her to the ER during an attack (which is a great idea), have you been keeping a log of all of her symptoms? I would imagine if this has been going on for a while, you probably have done this. A log of her symptoms along with photos of her belly (if she’ll let you take them) and any videos or anything else that you think would provide some insight to her doctors I would think would help. It would provide you with a little validation if she’s seen when she has no symptoms at all.
    Prayers for you, Libby, the rest of your family and the doctors who will come in to your life and make a difference!

  • Gerstrule

    Did you ever get your water tested? Just thought I’d
    toss that out there. This is so horrible!

  • Mattisongrey99

    I struggled for 18 months looking for some one to help me. I finally found http://chriskresser.com/ he got to the bottom of it in less than 2 weeks. Not sure if he works with kids but it’s worth a shot

  • Olivia

    Hello, Mindy, I also read your father’s tweet. My husband is a urologist and a great diagnostician, and so I asked him to read your post. Here is what he said:

    “I think that your daughter may have and extremely rare condition called “acute intermittent porphyria”. It can be diagnosed by checking urine porphyrine levels.

    She also may have a variant of Hirschsprung’s Disease, which is a functional obstruction of the large bowel. This is diagnosed by xrays.

    Another possible diagnosis is intermittent intesessuption of the cecum into the colon. This is diagnosed by xrays.

    She probably has already been tested for these, but just in case, I’m bringing these up as possibilities.”

    If you would like to talk to my husband, please DM me at @obrown (I am following you right now so that you can :) We will also pray for you. Love and blessings, Olivia

  • http://www.facebook.com/jennhesse Jennifer Wallace Hesse

    Mindy — My family and I go to Grace, and we met at the pumpkin field trip that you organized last fall for the homeschool play group (just a little introduction). I wanted to commend you for your tenacity in finding the correct diagnosis and treatment for Libby. My heart goes out to you as a mom!! I have been thinking about you and praying for you guys all day; I just can’t imagine having a baby so sick and not knowing how to fix her. I pray you will find an answer quickly and that Libby will soon be on the road to complete, 100% health and vitality!

    I have celiac disease but was diagnosed in my mid-20s. I wish I could share some great insight, but unfortunately, mine was a pretty simple case. I improved dramatically after starting a gluten-free diet, and I’ve stuck with it ever since. I scanned through most of the comments, and it seems like you’re getting some great input here…it’s amazing what a tool social networking can be in times of crisis!

    I will continue to lift up Libby to our Great Physician and praying for you as you advocate for the correct diagnosis. May God give you strength and understanding and knowledge!

  • Heather Macleod Loyer

    Hi there, I’m an herbalist…not Master yet, but getting there…I’m going to share this info with my peers and teachers and see if anyone has any ideas…I’ll let you know. So sorry for your baby. Heather Macleod Loyer

  • Sara-lou

    I posted your blog to my facebook profile. This is what one of my friends wrote back. I pray that it helps!

    ……Kari wrote: “Sara– A friend of mine has a baby who has many similar symptoms and has spent a LOT of time at the U of Michigan at Ann Arbor. The baby has been diagnosed with Biliary Atresia disease, one of the facets of this being she cannot absorb fats. There are many, many similar symptoms with this lady’s daughter including the gas, bloated stomach, low, low weight and mucousy stools. Anyway, I believe that Ann Arbor has quite a center for dealing with this disorder. I’m on my phone and don’t have all the capabilities of my big computer, so maybe you could respond to this lady’s post and mention something? Maybe it would help. Kari”

  • Brian

    I am very moved by your description of all that you, your family, and (of course) Libby has endured. I, admittedly, have no medical suggestions to pass along (though, thankfully, from the outpouring of comments from all of those like myself, it sounds like you have plenty to wade through).
    I just want you to know that I have posted this on my Facebook profile and will pass on any medically helpful comments I see.
    What I CAN say for sure, is that while praying for this, I sensed a strong presence of God. While I don’t k ow the specifics of HOW this will manifest in your situation, I DO believe it’s meant to serve as an encouragement of God’s care, concern, and involvement. I know you’re already trusting in God for His intervention, but I just felt I should share this with you.
    Please keep us updated.
    Pastor Brian.

  • http://www.elainecreasman.com Elaine Creasman

    My heart goes out to you. When my daughter was less than a year old she became gravely ill, and no one could figure out her diagnosis. Fortunately after several months and two hospitalizations it went away.

    When I read your story, it reminded me of cases on the show, Mystery Diagnosis. The show used to be on Discovery Health, but now it is on the Oprah Network: OWN. Here is the link to their website.

    http://www.oprah.com/own-mystery-diagnosis/mystery-diagnosis.html

    I tried to find out how to get your case on their show, but there wasn’t any information that I saw on the website. However, I noticed there was a place there where people were writing in about their own mystery diagnosis. Perhaps you can spell out your daughter’s case there, and maybe someone else has had her problem.

    I pray God will intervene. In the mean time I pray for strength and comfort for you, your daughter, and your whole family. God bless you. Elaine

  • Neil

    seems like you’ve gotten quite a response already, and plenty of advice to be sure. however, my mom is a homeopathic pharmacist with personal experience in celiac and related diseases. for what it’s worth, here’s her response.

    “Unfortunately, it is getting more and more familiar in allopathic (symptoms-based) medicine. I have heard similar nightmares for years, and it breaks my heart every time.  Libby’s parent sounds on the right track, following her God-given instincts, but they are trying to work in the accepted system with physicians who are not educated with the latest information on Celiac – even though they are deemed as specialists. 
    Where does this child live? If it were my family, here’s what I would recommend:
    1) Never again go to Vanderbilt Children’s Hospital. According to their friends, they have an appalling reputation, besides their own history of unhelpful treatment for this child – why continue doing the same thing when it leads to such disappointment? Tom O’Bryan is a celiac/gluten specialist in Michigan,  He’s a chiropractor who has an incredible story about his mother’s gluten sensitivity that was “missed” by her doctors.  I’ve heard his lectures and spoken with him several times about my patients, I’d contact him.  His website is: http://www.thedr.com/
    2) It’s obviously a digestive disorder, but it will lead to damage of Libby’s entire body, physical and neurological.  The blogger reports that she (at one period)  was eating “very little” processed foods – it needs to be absolutely zero.  As little as a GRAM of gluten can trigger an inflammatory response.  There also needs to be specific nutritional support to allow the body to heal, repair and recover its natural functions.  Again, it sounds as though they were on the right track at one point, but it didn’t continue long enough or was missing one or two factors she needed for recovery.  It can take up to two years for the intestinal lining to regenerate on an absolute gluten-free diet; also addressing other probable (not officially diagnosed) food triggers and nutritional deficiencies is critical. It’s a multi-factorial condition, but has to be looked at through systems-based medicine, not symptoms-based, in order to find healing”

    My family will definitely be praying for you & yours.

  • http://www.facebook.com/jennhesse Jennifer Wallace Hesse

    I shared your blog post on my facebook page, asking people to help if they had experience with ped. GI issues, and a friend wrote this back. Just wanted to share — another yeast suggestion:

    “There is a very informative book with gluten-free, corn-free, casein-free, and yeast-free recipes called ‘Feast Without Yeast: 4 Stages to Better Health’ by Bruce Semon MD, Phd and Lori Kornblum. My children have food allergies and we are on this diet. The blood test for food allergies/intolerance is only 50% accurate and several times we have had my son’s blood tested it came up negative. The skin test (injecting extracts of the allergens under the skin) proved otherwise and this diet has transformed my 5 yr old. He had lost so much weight and also had the ‘starving child in Africa’ appearance with the distended belly. He had horrific constipation and was unable to go without an enema everytime. Food allergies or an overgrowth of yeast can cause chronic constipation or in your case diarrhea. Most mainstream docs are not educated on these things, so you may need to trust your gut and test things on your own. We will keep you in our prayers.”

  • Susan

    I posted a short note yesterday, but need to make a little correction. My friends did take their two kids to CCH, and they were helpful, but their biggest help came from Cleveland Clinic Children’s Hospital.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Emily. I actually took some video of her last night when she was having a particularly bad episode. Someone recommended I do that yesterday. I’m preparing a packet now of medical records and such to fed ex to CCH. I’ll definitely be sending photos and a symptom and food log. Great suggestions. tHanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Nope. We never have had or water tested. But in the course of the 2 1/2 years since this started, we have been on 3 different water supplies so I’m not sure that is the issue. We most often drink filtered water though. I’m sure there is all kind of crap in our water. I’m scared to find out. Yikes!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks for your comment. We have actually done acupuncture and quite a bit of holistic medicine with Libby. I’m a big believer in natural remedies, but unfortunately we haven’t seen a lot of results this time around.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Olivia. I will mention all these to our new doctor when we get one. I am compiling a list. :)

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Jennifer!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Sara. I’ll check this out.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thank you so much Pastor Brian. I agree God is totally in the middle of this situation. I’m not sure what He is up to, but it definitely something. We had Libby prayed over at church today and anointed with oil. There were some clear words people were given in regards to what is going on spiritually behind the scenes. God is good. I am eager to see is glory revealed in this situation. :)

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    I’ll check that out. Thanks!

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Neil. My gut really tells me it’s not Celiac, although I could totally be wrong. Libby has been solidly off of gluten for several, several months with no improvement. However, I am keeping her off it until we are 110% sure. She still eats and incredibly healthy diet made up of mostly organic fruits and vegetables and meat from a local farm. She does have goat yogurt on occasion. I’m considering having her do the GAPS diet. We much of what is on there already, but I think it could further help to heal her gut. I agree totally in not just treating the symptoms. That is why she has received no medication yet. I want to find out what is causing the problem instead of just treating her symptoms. The medical system is somewhat broken in regards to this. Thanks again Neil.

  • http://twitter.com/mindyspradlin Mindy Hyatt Spradlin

    Thanks Jennifer. I’ll check out the book.

  • Susan

    My friends wanted me to send you this link to Cleveland Hospital. Again, they really helped with their kids’ ‘mysterious’ digestive ailments. Hope this is helpful in your search for a cure for your little one.

    http://my.clevelandclinic.org/childrens-hospital/specialties-services/what-we-treat/gastroenterology.aspx

  • Jennimac05

    This may be redundant, but have you tested for food allergies? They can cause GI issues. My son tests only mildly via scratch test, but has rather striking numbers on an IgE. His GI issues have improved over the last year that we’ve managed his allergies better.
    Good luck!! I’m sorry for your daughter’s pain. I know how frustrated and helpless you must feel.

  • Jennimac05

    PS- Your pediatrician should be able to order the IgE test. It would help you at least rule out food allergies.

  • Benning6

    It’s so amazing how many people have reached out to you regarding your post! So here’s one more: add POTS syndrome to your list of possibilites. It is difficult to diagnose, but there is a specialist at the Mayo clinic. You should consider Mayo in Rochester for your daughter as they will spend a day with her, meeting with all different specialists (nephrologist, pulmonologist, GI, etc) and at the end the physicians meet for a combined opinion diagnostic. If you limit her to only one specialist, they may miss something as they are not trained in other areas. Which ever you decide, I wish you the best and hope for a quick diagnosis.

  • http://www.facebook.com/people/Kim-Janous/527336437 Kim Janous

    Wow, I feel like I just read a page out of my journal. Your daughter sounds almost exactly like my daughter (only 2.5). We also have tried countless alternative methods as well as struggled through all the frustrations of western medicine. My family has been on the GAPS diet for a year and a half and everyone’s diarrhea improved but my daughter still looks pregnant and still complains of abdominal pain. I am not fantastic at blogging but you can see our story at thereluctanthippiefamily.blogspot.com.

    I’ve read every comment to your post, searching for something that might be an answer for us as well. I will pray God will give you wisdom to sift through all the suggestions and discern which direction to walk next.

    I know the incredible agony of feeling helpless to help your child. I also know God has used this season to strengthen my faith in His goodness, regardless of circumstances. I’ll pray you too will have peace from His promises.

  • Dianne Tant

    Mindy I am so sorry. I have been struggling with the same thing for myself. I have Dr. Bock’s book if you want to borrow it. I have upped my probiotics and added more fiber. also,,,,stress adds to mine. I hope you get to go to Cincinati…maybe your parents can help out financially? I have IBS and GERD….I take prevacid for gerd (after trying to quit it and eating healthy….but I still needed it) I have been very frustrated too. my stomach hurts all the time(well most of the time) i feel hungry and nauseated at the same time…but when I eat…I feel better for a little while….I am PRAYING for a solution for you…..

  • Crystal

    Mindy, my entire family is praying for Libby. My Aunt, who has worked in a holistic clinic for years said this:

    “it really sounds like she has a parasite. I wonder if she allowed them to medicate Libby instead of just doing cleanses?

    Also, there is a disorder where one cannot digest oils that can cause symptoms like celiac. Her triglycerides would be low (blood test).

    Most regular doctors don’t know how to treat either condition. She should look up a specialist in tropical diseases for the parasite and a digestive specialist for the oil thing. Sometimes regular testing for parasites is not effective. Parasites are often misdiagnosed for years because some of them are so hard to find.”

  • Amy from Bellingham

    Mindy, I’m so sorry you have not been able to find answers. When looking at Celiac with one of my kiddos my naturepath said four tests needed to be done because Celiac won’t always be picked up with the regular screens. She said these were AGA IgG, AGA-IGA, Anti enomysical Antibody, and TTG. Next time she has blood drawn you may want to ask about these. If diet is helping run with it – even without a Celiac diagnosis. CCH sounds like a great option for you.

  • Mandyk

    Hi Mindy,
    Your post was forwarded to me as we too have gone through similar symptoms with our son. I have a 17 year old son who has lived in abdominal pain for a year and half now. We live in a northern Cincinnati suburb and we are quite familiar with Cincinnati Children’s Hospital GI team. This journey has been a long journey of diagnostic testing and I wish I could say CCHM is #1 with pediatric GI. We’ve had lots of frustrations (pretty much the same as what you’ve experienced at Vandy) with the team and we were ready to head to Cleveland. We decided to try one more GI doctor at CCHM and we finally found one who has listened to our son and will not stop diagnostics until we find the solution. We are still on the journey of finding the source but we’ve made major strides in a few weeks vs a year and a half. We have referred this doctor to several families who’ve experienced similar frustrations with the GI team and they too have switch to this doctor. Everyone his very pleased with him and all speaks of him highly, including my son. I would like to refer his name to you privately. Please contact me, mandyk@centerpointechristian.org. I would love to help you as much as I can with information regarding CCHM GI doctors.

  • DT

    I see that lots of people have responded with book suggestions, but I will throw in two more that I found helpful on the road to the Lord recovering my nephew from Autism that I think may help your daughter.

    “Breaking the Vicious Cycle” by Elaine Gottschall is a wonderful resource written by a mother who spent years with a sick child that no one could help or diagnose correctly. The diet she outlines is more specific than just GFCF, and you may appreciate, like I did, the specific steps of the process it outlines. The book is available at the following link, as well as at most bookstores http://www.scdiet.com/
    A site that corresponds with this work is http://www.pecanbread.com/ . A GREAT resource. It focuses on helping kids, too, which is a blessing. The book and those 2 websites would be my #1 recommendation to you.

    Dr. Mark Hyman also seems to have a good understanding of how gluten in particular can lead to many symptoms and diseases. He has written a couple books, and here is a link to an article he wrote that kind of summarizes the dangers of even a speck of gluten in some bodies.
    http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/?utm_source=Publicaster&utm_medium=email&utm_campaign=drhyman%20newsletter%20issue%20#17&utm_term=Get+the+story

    As you may already know, total 100% elimination (of gluten, casein, etc.) is the key to success.
    I would suggest, in addition to making sure what she is eating is 100% free, making sure that your daughter is not coming in contact with any gluten in non-foods as well, like in shampoos/conditioners, soaps/body washes, lotions, makeup, medications, vitamins, detergents, stickers, temporary tattoos, envelopes, play-doh, etc..

    Ultimately, whatever your path, prayer and seeking the Lord will bring you and your daughter the most comfort. I pray for the grace needed for you and your family to get through this. May the Lord bless you.

  • Dina in Oklahoma

    Mindy, I would assume that the most basic of tests run when there is abdominal pain has been run – an xray of the intestines – but just in case that was overlooked I’ll share our experience. When my daughter was probably about the same age she started complaining of stomach pain. Long story short, her bowels were completely backed up- which was determined by an xray. She still had bowel movements so I had no idea she was constipated. She also had loose mucousy stools. I really would have called it diarrhea. Much of the time she didn’t even know when it happened – we would notice it in her clothes. Mirilax did clear up that problem. I’m not dismissing Libby’s situation lightly. I would just hate it if the doctors had overlooked something so simple to correct. Good Luck.

  • http://candelierious.blogspot.com Lis

    I have no advice, but I am praying!

    Lord, grant wisdom to the doctors and to Libby’s parents as they navigate these choppy waters. I know, as a mom, how we want to fight and attack when we see our little one suffering and are screaming to the world and no one seems to be able to help. Give them a peace only you can give. And more importantly, I ask for healing for this little child’s body. In Jesus’ name. Amen.

  • momtojklnt

    Hey Mindy,
    My husband works with your dad, and I had the pleasure of meeting your husband when he came to give us a bid on some tree work! So, I feel as though I know you vicariously through them, but it was my mom and dad, (who are good friends with your parents) who turned me on to your blog… She came over today and asked if I had read your blog recently because it had to do with your daughter. She thought it sounded familiar to something my niece has. I read through a lot of the comments, but I only saw one that mentioned the allergy to fructose. As with your story, it took a lot of Dr. and a lot of misdiagnosis to figure out what it really was, and even when they came up with the fructose allergy it seemed so UN-natural. She had to be taken off of all fruit! But her symptoms were very similar to your daughters and I thought I would mention it. I know your list to ask the new Dr. is long, but it might be worth adding to the mix. Our prayers are for all of you, and for answers that bring healing! Thanks for sharing your heart and your journey!

  • Deborah McClintock

    Hi , my sister posted your blog on facebook and I came here to read what people had posted to you before I made a comment. I see you have had Cystic Fibrosis suggested to you a couple of times in posts. That was my gut response when I read your post. my youngest daughter has CF. GI problems are SO related with CF- and it is an easy test to determine- A simple sweat test lets you know if you have CF. Foul gas, mucous in the stools ,weight loss, sore tummy, It is classic! I know you have had lots of other suggestions here, but please Do take this suggestion seriously…CF has more to do than just with the GI track in the long run and it would do you good to rule this one in or out sooner than later! My prayers are with you!
    Deborah McClintock- I am another mother who uses and swears by Arkansas Children’s Hospital!

  • Gracifer

    I obviously don’t know the exact conditions of your daughters discomfort, but it sounds oddly similar to a condition I had a few years ago… After I would eat, I would get a really uncomfortable stomach ache that would knock me out (to the point I had to go lay in bed, a mix of menstrual cramps and diarrhea type pain). The final diagnosis after SEVERAL tests and medications (including celiac’s) was a bacterial infection in my intestines. I was put on an antibiotic and felt much better after months and months of discomfort… Hopefully this will help you. Praying for your daughter. I know its tough to see a little one, especially one you love dearly, in pain.

  • Tcraiglish

    Mindy,
    I recieved your post from a friend that felt we were going through the same things with our daughters. To be honest I was hopeing that it would end with answers to our questions that we have not yet received from Vandy’s GI. We have been going since July and still have no answers. I can not tell you how many test have been ran. I wish there was something I knew that could be done to help both of our girls. No child should have to live in pain. I will pray for your Libby as I pray for my Taylor.
    Hugs,
    Trudy

  • Karen Higgs

    Mindy,

    Just saw your last few tweets. Have been praying for answers and relief for you & your precious Libby. As I said in my original comment, my daughter & I both have HD. If you have questions, or if I can help in any way, please, please feel free to contact me. I am part of an international support network for families of children with HD and other motility disorders.

    Continued prayers,
    Karen
    karen.higgs@att.net

  • BJ Belcher

    Hi, I was linked to this by my friend, Lillian Boeskool. I am a pediatrician in KY. I was telling Lillian (to tell you) that my biggest worry would be Hirschprung’s disease from the story above. I had a child in my clinic with a VERY similar story. She had gone to 3 different GI docs before she was finally diagnosed. Now, I’m not saying that I’m smarter than a Peds GI doc or a radiologist, but the child in my clinic had a normal barium enema as well, but still ended up having Hirschprung’s. Her’s was what is referred to as “micro-segment” which doesn’t play by the rules. The only TRUE way to diagnose it or rule it out is by colonoscopy and biopsy, which can be tricky with the microsegment version because the affected area is so small it can be missed. It took nearly a year for my patient to be correctly diagnosed and treated, which was frustrating enough for me, so I can only imagine how it was for her parents. Finally, she ended up at Nationwide Children’s in Columbus, OH. There is a Peds GI doc there who specializes in motility problems, whose name is escaping me right now. So at the risk of sounding mean (as in wanting your little girl to go through an unpleasant test) I would urge you to push the possibility of a colonoscopy. The little girl, who is now 7, had surgery to correct her issue and is now healthier than she has ever been…and loves to tell people about how her broken guts got fixed. Good luck to you and if you have any questions for me, feel free to email me (Lillian has my email address)

    BJ Belcher

  • Brian

    I will continue to pray and pass this request on to the rest of the team at Church52. Thank you for the update…as you said; God is definitely up to something.

  • http://thedomesticexecutive.com/making-progress.html Making Progress | The Domestic Executive

    [...] posted on Libby’s stomach issues last week and was totally shocked by the number of comments and emails I received. I can’t [...]

  • Heather Macleod Loyer

    I had to laugh. I’d just started reading a book, Breaking the Viscious Cycle, required reading for an herbal course I’m taking, and I thought of your situation. Before posting, I thought I’d check the comments and…hmmm…someone else already recommended it. So, that’s great! I think you’re on the right track. All the best!
    Heather Macleod Loyer

  • SC

    OMG. I just read this. I could have written this myself. I have a son who just turned 6. He weighs 35 lbs. He has exactly the symptoms you describe. We have tested for cystic fibrosis, celiac disease, parasites, c. diff, giardia,  etc etc.  We’ve eliminated dairy, gluten, and soy. He is constantly on pediasure or some supplement.  The symptoms you listed above are identical to what he experiences.  
    We had to go home in the middle of trick or treating because of diarrhea. Twice.  The bloating can be incredible, and the gas…you could hardly believe it comes from such a little guy. Chronic abdminal pain and recurrent diarrhea. One doctor also suggested the air swallowing thing to us. On xray (to rule out constipation) he has tons of air in his bowels.  Yes, we’ve also been advised to put him on miralax, even though he is clearly not constipated.  (WTH?) He recently had endoscopy and colonoscopy which turned up nothing. The GI has suggested another food trial. I could scream.  We also experience that sometimes it can go away for a period of time……. but it always comes back. In January he went 3 weeks without a problem. I thought we were good, but then boom. Back again.   I came across your blog doing a search for congenital sucrase isomaltase deficiency.  Someone mentioned this to me today and it seems a possibility. I have actually noticed that candy consumption correlates to major symptoms – its not the only thing because it happens in the absence of candy,  but – we have so much trouble on holidays (halloween, valentines day are classic examples of terrible days).  I have yet to read the comments but I am going to go there next. I will follow your blog – please follow up if you figure out anything. I share your desperation. I will post back here if I get any answers. We are stuck with this food trial for a month but see GI again at the end of April. Sorry this is so disjointed. I am 

  • SC

    now I see this says 2011 not 2012 so …I will go keep reading. LOL. 

  • Jennijo511

    Mindy I hope you still receive this even though it was awhile ago. If you daughter has not been diagnosed officially I strongly recommend you mentioning congenital sucrase isomaltase deficiency. This is what my daughter was diagnosed with and her story is literally exactly the same as Libby’s. Please look into this I truly believe this could be your answer.

  • Jane22

    Could be Sucrase-Isomaltase deficiency http://www.csidinfo.com/
    It is not routinely tested for. It could also be a number of other things.

  • Jan from Kentucky

    I have just read your message and I have a 25 year old special needs daughter that is going through this same thing. She was a patient at Cincinnati Children’s for years and they are trying to transition her out because of age but she is having a horrible time. We went back to Cincinnati last week as our family doctor finally determined it is her gall bladder in fact and due to her having to be intubated with pediatric tubing GI at Children’s hooked my up with Dr. Brown who is an awesome surgeon for GI problems and they have agreed to see her and get this horrible gall bladder/polyp out. Her behaviors are horrible and I think it is because she can’t handle this pain and it hurts so bad. She cannot even ride in a car it makes her deathly sick. She thinks she has to use the bathroom but when I stop she doesn’t do anything it is just a feeling or urge. She cries continously with this pain. I am in hopes that once this is removed she will be fine. We have went through every test like you did the celiac and all and it was all negative. Keep the faith call Dr. Kaul at Children’s Hospital in Cincinnati.

  • Stephanie

    This is what I was going to post–Hirschsprung’s Disease.
    My son has this. He was born without the ability to poop, but some HD patients actually do get some poop out. The distended stomach and what sounds like failure to thrive is very common on HD patients. I wonder, did your Libby (I have a Libbie too!) poop normally as a baby? When my son was born he spent the first 2 weeks of his life in the NICU because his belly continued to get bigger and bigger and he would just throw up. This was from the build up of stool in his bowel. Eventually he started just throwing up bile. Once they started doing extraction enemas his belly came down to a normal level.
    Hirschsprung’s is actually a nerve disorder that manifests in the bow elk, so it is not a true “bowel disease” in that the bowel does not behave because it is both missing the nerves that it takes to move poop down the bowel, but also, as in the case of my son, even when the offending bowel segment is removed, the rest of the bowel may not be normal. My son had a 5 inch segment that was removed that had no ganglion cells, but still could not poop normally for himself (though better than before surgery). Turns out he has sphincters that get varying signals, so that some are too tight and some squeeze on only one side and not the other.
    I said all that to say that I hope, 2-3 years after this post, that you have found an answer for your precious child. I know the hurt and the worry. We took our son to Children’s Hospital in Birmingham, AL where he saw Keith Georgeson, who invented the operation my son got. Awesome, brilliant man.
    ON another note–the GAPS diet is supposed to be very healing. I am getting ready to go on it myself for digestive issues.
    Hugs and prayers,
    Stephanie

  • Jennie Lee Vargas

    http://celiacdisease.about.com/od/glutenintolerance/a/Gluten-Sensitivity-Testing.htm

    If you read this article (I’ve seen a tv show about this also)…you will see there is a stool test that finds it in the intestines. It is difficult sometimes to find it in the blood due to several factors…read the article for details. Hope this helps, I am taking my child to Mason as soon as they open tomorrow I am going to call for an appt. to Muddy Creek Pediatrics in Mason. Look them up in Facebook. Good luck. Here is the info on their website about celiac disease http://muddycreekpeds.com/blog/what-is-celia-disease/

    hope this helps. My child has the same stomach ache symptom….
    feel free to email me.

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