Hello.  We were very impressed with the facility and the doc.  She gave us some great info (which I am kinda PO'd we weren't told before by our other doc) regarding further bloodwork that she recommends for Celiac, and to find out more about the abnormal enzymes (Alk phosphate) and she did more bloodwork and ordered a 3 days stool test (collect it for 3 days then bring to lab--FUN!) and we are having a sweat test done to rule out Cystic Fibrosis.

I forgot to write done all the blood tests (I think there were 6 or 7) but I know she was doing all the possible tests for Celiac (repeats of what was done and some others that were never done), and doing RAST (blood allergy tests) for peanuts, eggs, soy, milk and wheat, as well as repeats of the liver enzymes, and fragmentation of the alk phosphate to see if the elevation is related to bone or liver.  There are 2 others  that I can't think of right now (brain fry).  I am so happy we went to her....she ordered tests I never even was told existed.....

She said she is not worried about the liver at all and thinks the high levels are due to his age and the fact that in growing children the levels can get elevated.  She said if the tests she just did come back normal we will assume that the liver/kidney issues are fine.  She said the u/s was normal as she would have expected.

As to his weight, well her hi-tech scale said Tyler is 20 pounds (1 pound less than the ped scale) and 29 1/2 inches (1 inch less than the rather inadequate thing they use to measure at the ped).  So he is less than 3d% for both height and weight :(  We are keeping him on Alimentum for now, but maybe Neocate or Peptide+1 later.....

We spoke to the dietician and she said feed him 3 meals and 2 snacks a day and she wants him to use a cup and get off bottles.  She says we have to be tougher than him and let him know he can only eat in his chair at certain times...he shouldn't be allowed to eat what he wants when he wants.....we can add vanilla extract or chocolate or strawberry syrup to the formula to make him like it better from the cup.  He can have a bottle in the morning and 1 before bed but that's it for bottles!!!

I feel SOOOOOOOOOOO much more confident in this doc and dietician and staff.

We go back on 9/9 and I will keep you posted.  She sad an endoscopy may still need to be done, esp. if the Celiac bloodwork comes back indicating possible Celiac, but that the endoscopy would be a "worst case" scenario and she won;t do it unless he feels ther is just cause (I.e. abnormal bloodwork).

Will keep ya posted.  Thanks  for all the support!
Nancy

"My son is my greatest accomplishment and the opportunity to raise him is my greatest challenge"