Out of Desperation
March 18, 2011 
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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.
