Wednesday, June 2, 2010

Ben's gastrointerologist results

Well, we finally have a full answer on our sweet little Benja-boo. Our sweet and Highly Sensitive growing boy apparently also has a highly sensitive system.
He has had "tummy troubles" since he was born. Colic. Gas. Long periods of screaming as a baby, but also my most contented baby when he was feeling good.
After years of should we say, "challenges, " we finally asked our Dr. to do some further testing. The testing led to more testing (no answers) to more testing (inconclusive answers) to more testing (allergist--and he is allergic to everything in the air around him), to allergy shots, to more testing and finally a referral onto the Little Rock Children's Hospital for more testing.
Last September, I think, (it was about the same time as Nathaniel's second hospitalization), Luke and he took an overnight trip to Little Rock to have an endoscopy and colonoscopy done. (did I even spell those right?)
He was a little trooper--sleeping a lot for the next couple of days.
We were thinking it would be Celiac Disease since that runs in the family, but it wasn't.
Once again, the Gastrointerologist said that something was definitely going on with his system, but they didn't have a name for it yet. All the tests from that appointment came back as "relatively" normal except for his stomach lining.
Let me see if I can explain this in plain English. Apparently, the cellular-lining of Benjamin's stomach is inflamed. This causes bloating (they commented on his Buddah-like appearance), excessive gas, bouts of diarrhea or constipation, stomach cramps and occasional vomiting. None of which are any fun to deal with.
The Dr. said that he was not coming up intolerant or allergic to anything per-say, but that dairy products definitely seemed to aggravate his system. We were instructed to take him off all dairy and soy products until his next appointment (which was today).
Today after seeing the nurse, the Dr. who did the surgery's and the dietitian they finally have a reason for his non-dairy allergy but yes-dairy allergy. Confused? So was I.
Benjamin does not have the normal dairy allergy. It's not to the lactose or the protein or anything that would show up on any tests. It's a Cellular Allergy.
Never heard of that? Neither had I.
At the cellular level, Benjamin's body can't handle the components of dairy. It is classified as a true allergy, but will not show up on normal tests. That is why they had to go in with a camera as well as scrape samples of his stomach, esophagus, and intestines.
He is not to have ANY--even trace amounts.
What does this mean for goats. We don't know yet. The Dr. wasn't even sure. This type is rare enough that the Dr. said we would just have to see how Benjamin reacts, but he advised us against giving him any. GROAN!!!!!!!!
At least we have answers eh?

2 comments:

Miriam said...

Wow, talk about something rare! It is good to get answers I am sure, hopefully it will help you figure out how best to deal with it, though I am sure ruling out all dairy is not going to be easy.

Living Creatively said...

I'm so glad you finally have an answer, but so sorry it took so long and is such a difficult thing to deal with. :-( Did they connect you with a support group or anything? Have you found any kind of support (recipes, advice?) online?