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Chronic abdomen pain, stunted growth, and loss of appetite in a 4 year old

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.  
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4851940 tn?1515694593
Sorry to hear about your 4 year old having all those problems.

She has had all the allergy tests done and other tests that have found nothing, but there is still something that is causing her a problem.

Has your daughter had her stools examined for any worms or parasites.  An infestation of worms can cause stomach problems.  The other cause of stomach pain and feeling ill and not having wanting to eat because of pain can be caused the bacteria Helicobacter Pylori.  The test for this can be done through a stool sample or a breath test gives very good results.  Blood tests for this bacteria do not show accurate readings.

The other problem that sometimes gets missed is swollen glands in the tummy and sometimes can mimic appendicitis.  The condition with the swollen glands is called Messenteric Addenitis.  

The other cause of stomach problems in young children if no physical cause can be found is psychological problems.  Even young children can be affected by worrying and feel anxious if there is something that they do not feel secure about.  This could be from something going on in the home, being exposed to unsuitable films, or issues at school.  

Keep an open mind.  Be calm and reassuring to her, do not make too much of an issue, because she can pick up on your anxiety and that in turn can make her feel more anxious.   Keep a diary of all that she eats and drinks to see if there is anything that may be making her worse.  Also ensure that she has a good night time routine and is in bed early and not staying up late watching TV.  

With your daughter not eating right, has she had her blood tested for anaemia, diabetes and depleted levels of vitamins B group and Vitamin D?

If she does not feel like eating but is fine with milk, you could ask your doctor of pharmacist if there is any replacement food shakes that would be suitable for her to build up her strength again.

Even though is she is not eating, which is a worry, do make sure that she has the milk (if she is OK with lactose) and has plenty of other fluids in the form of juices and consome soups (the watery type).  A favourite with most people and children is chicken noodle soup.  

Good luck.

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Avatar universal
When i was a kid, i had horrible stomach pains and vomitting. My parents took me to several doctors and they found nothing. We eventually figured out it was whole milk that was doing it. To this day I still can't have whole milk with out severe stomach issues. I can handle other dairy ok. Stop giving her whole milk for a day or two and see if she improves. I was also very short as a kid.
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Avatar universal
I agree take the milk away and see if it helps. My almost 10 year old son has a similar issue but his pain is worse after eating. He is in the 1st percentile for his height and 20th for weight. After watching more closer and eliminating foods and drinks 1 at a time it turned out milk was one thing causing his pain. I still give him milk in small amounts and he does fine but anything more than a couple ounces he starts having pain. Have you took her to a endocrinologist since she is so small? After going to endocrine they have my son going to genetics. They think it's something genetic causing my sons issues. Hope you find answers for your daughter soon.
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