malnourished foster son! need help! - Digestive Disorders Message Board

fostermom · 07-09-2003, 11:13 AM

I have 3 year old twin foster sons. Both were born premature, one has mild cerebral palsy. He is the one I am most concerned about since he has never even come close to catching up size wise with his brother (who is tiny as well) or kids his age. (he is not even on the growth chart) He is a sickly kid, on pediasure (1000 extra calories a day). Has been checked for cystic fybrosis, digestion of fat, celiac disease and now genetic testing. All turned out normal (though we are waiting on the genetic testing) He isn't gaining much weight even though he has been with us since February and his bm's smell like amonia!!! He has several a day and they stick to him like glue. I am running out of ideas to ask to have checked and lose sleep worrying about the poor little guy. He wakes up crying several times a night. He came to us at 21 lbs 33 inches and he is now 24 lbs 33 inches and he looks like a stick! No rear end. Any suggestions would be greatly appreciated... I am at a loss.

rhyanenrose · 07-10-2003, 10:01 AM

When you mentioned ammonia, the first thing that came to mind is Diabetes. An ammonia smell, or sweet acetone smell is a common symptom in diabetic children. Does your child seem thirsty often and urinate several times a day?

My 3 year old has Celiac disease and he has the same sticky, bowel movements that you describe when he gets gluten. What tests were done to check your child for Celiac? Did any of his bloodwork come back positive? Did they do an endoscopy to check for any microscopic damage to small bowel?

Sounds like the doc did quite a few tests to check for GI problems. Did they ever check for food allergies and milk protein allergy? Sometimes milk protein allergies(casein) can cause malabsorption.

I wish you the best of luck and hope in finding out what is wrong.

Take care.

rhyanen

PS. By the way, the "no rear end" you talk about is very common with celiac too. I wonder if the labs may have been screwed up. If you still think it may be celiac, please visit us at the online support group. Post a question there and you will get all the help you need. There are many very educated people there willing to help a newcomer.
[url="http://login.prospero.com/dir-login/index.asp?webtag=celiac&lgnDST=http%3A%2 F%2Fforums%2Edelphiforums%2Ecom%2Fceliac "]http://login.prospero.com/dir-login/index.asp?webtag=celiac&lgnDST=http%3A%2 F%2Fforums%2Edelphiforums%2Ecom%2Fceliac[/url]

[This message has been edited by rhyanenrose (edited 07-10-2003).]

fostermom · 07-11-2003, 03:01 PM

I was convinced I had finally found the cure for his problems with the celiac. He has all the symptoms and seems so convincing!!! but they did a blood test for it and it turned out negative. I didn't have him on dairy for quite some time since that was my first guess... but now he is on pediasure. To be honest nothing changed when he was off of it for the month. Diabetes is a good idea to check... he drinks far more than his twin brother... but you would think with the 3 blood samples they have already done they would notice that!!! But then maybe not. Hard to tell if he urinates frequently since he is in diapers still... though he is often wet.

I will keep looking and perhaps they will refer to the gastinternologist which is my hope!

thanks for your ideas. I have been trying to add calories galore and pray alot!

rhyanenrose · 07-12-2003, 05:51 PM

Hi. What tests did they run to check for celiac? You mentioned one, but there are actually 4 that need to be done in order accurately diagnosed celiac. Also, did they already test for diabetes? You can lose weight fast with diabetes. True, It is hard to tell if a child urinates alot when they are in diapers. Does he seem tired often?

If they haven't tested him for diabetes, make sure the doc does the fasting blood test. It is more accurate. The main symptoms of type 1 diabetes in children are: hunger, thirst, frequent urination, lethargy, drowsiness, and possible acetone, fruitiy smell on the breath(ketosis). Unfortuantely, diabetes type 1 and celiac are often seen together in children. Doctors are now recommending that if a child has Diabetes, they should be tested for celiac too. There are so many associated disorders found with celiac, it is scary.

Good luck with everything. Please keep us posted. I hope you will find some answers soon so that your child will get better. Poor little guy.

rhyanen