Any fresh ideas on this difficult diagnosis?
My four year old daughter suddenly stopped eating about two to two and a half years ago. She began to loose weight and complained of stomach pain (originally all over her entire abdomen, now more in the area around her belly button) that was so sever at times that it would cause her to vomit from the pain. We can't seem to find anything that makes the pain either worse or better.
She was in the 80th and 90th percentiles her entire life until the pain started and now she has regained the weight lost and has remained the same size for the past two years and is now in the 50th percentile. Her 2 year old sister is nearly as tall as she is, weighs only a few pounds less and eats more.
We took her to her pediatric doctor, who treated her for constipation (this didn't work). They tested for wheat, egg and dairy allergies to no avail and took x-rays. They then sent us to a pediatric GI doctor at Marry Bridge Hospital whom we saw often for about nine months before he gave up.
He started by treating with what I think was zantac (a liquid antacid) twice a day every day for two months, thinking it would give her time to heal if it was a problem created from acid erosion. The medication was gradually reduced and when removed her pain and vomiting spiked drastically (she went from vomiting twice in several months to six times in one week). He then thought it might be Celiac because her endoscopic biopsy showed no redness or damage and flattened vili.
We went 100% gluten free for about two months with no avail. He then tested her DNA for the Celiac profile (she had neither of the codes required for Celiac). We then did a breath hydrogen test that showed she had fructose malabsorption (this seemed like an obvious result to the flattened vili to me, if her body wasn't absorbing anything it obviously would also not be absorbing sugars) and we went on a strict Low FODMAP diet for about a month with, again, no avail. I felt that she was not getting the required nutrition from the diet and it was not helping with her discomfort level at all. He also had her take a series of different strong antibiotics on two different occasions thinking maybe it was e coli or some other rare bacteria. He also took x-rays and gave her an ultrasound. Nothing seemed to help.
Finally he told us that he didn't think it was Leukemia and that the diets weren't helping, to go ahead and feed her what ever we wanted, stop asking her about her stomach and call him if things got worse (although he even admitted that he could not say what "worse" could be).
At first things seemed to quiet down a little. She was no longer suffering side affects from the improper treatments and was excited about being able to eat what ever she wanted again. However, that was short lived and we seem to be right back where we started.
She is not eating but a couple bites of food a day on her own and we end up having to force feed her so that she doesn't starve. Most recently she had been saying her stomach hurt (she only complains when it is really bad) and had not eaten in two days (wouldn't even take a treat or her vitamin that she really likes) and ended up vomiting after I forced her to take a bite of a sandwich. She will drink milk, however, so I hope that is helping keep her bones strong (we try to always get whole milk).
I am afraid not only of what is causing this but now also the damage that is going to be caused to her body because of the lack of nutrition. She takes a vitamin daily and likes them (there are times that she is in such discomfort that she will even refuse her vitamin and candies). We try to eat organic as often as possible and eat very little processed foods (however she does eat school lunch), but I fear that it isn't enough.
She is a very delightful and happy child. Her IQ is threw the roof. She is wiggly and out going. She participates in a full day of kindergarten and likes to play with friends and climb and do other kid stuff. However, she seems to run out of steam and need frequent breaks, preferring less active things like reading, computer time and TV. She is very strong and rarely asks for anything, yet will become emotional when tired.
We are going to see a new pediatric doctor today but I am at a loss of what to say to her or anything to ask. My husband talked to her and told me that the doctor we are going to said she thinks it may be abdominal migraines. I looked this up and the pain is in the right area but none of the other symptoms seem to fit. I don't want to start the "guess and treat to rule out things" kind of treatment again... And neither does my daughter.
Any ideas, thoughts, etc. are welcome. Thanks in advance.