Our final day here in Cincy. I do believe this was the hardest day for me. Last night we took off Jacob's patches and were hopeful at what we saw. A number of the patches looked positive to our untrained eyes. We met with the allergist this morning. After looking at his back he said that what we saw as maybe being positive is really an ambiguous result. However, 3 years ago when Lili had the same testing and the same "positive" result to chicken and turkey, we removed them from her diet. All her symptoms cleared. Since we had good results in her case, the allergist agreed that pulling the foods that appear to be ambiguous from Jacob's diet along with the top 6 would be a direction we could go in. So here is the final list of what Jacob can no longer eat:
In 3 months we come back and scope. If the disease goes into "remission" then we add one food back at a time.
The dietitian came in next. He was very helpful with suggestions on what we can substitute. He also said that depending on how much protein we are able to get into Jacob, we may have to supplement with elemental formula. I truly appreciated his advice and wished I had had this help when we first put Jacob on his elimination diet. But all the while I kept thinking about how am I going to feed this kid. No more hot dogs which was always our fall back. I do believe the first food we will trial is beef so he can have his beloved hot dogs back. Then I had the horrible thought of how is my mom's dahl, which she makes for Jacob, classified? Is it considered a pea? It's a lentil. Sensing that I was on the brink, the dietitian said he would fight to keep legumes in Jacob's diet. That would mean approval from the allergist. So off he went to discuss the matter and came back with a thumbs up. Oh thank you! Because besides hot dogs, our other fall back is mom's dahl. Phew.
I spent the rest of the day thinking about this whole situation and about how horrible this disease is. We went out to dinner and Jacob couldn't eat, his stomach was hurting.
This has been a long week for both kids and has taken it's toll. Jacob's behavior in the past few days has gone to almost intolerable. But he's in pain, tired, and just as frustrated as we are. At least that's what I keep reminding myself of. He often reminded us that this was the worst trip ever. Unfortunately, he's too young to really understand how all this poking is to his benefit in the end.
Tomorrow we go home and we are all excited for that. We will visit Cincinnati Children's Hospital in 12 weeks.