What can the boy eat???

What a day! We got some more results from the allergist today. Last week she told us Jack was allergic to oatmeal. I thought, "OK, not the best news but we can deal with it." She called today and left a message. I immediately had a bad feeling because she said she'd only call if it was something important. Well, Jack is also allergic to the following: MILK, PEANUTS, EGG WHITES, EGG YOLKS, HAZELNUTS, and ALMONDS. We still don't know about wheat, fish, shellfish and soy. The allergist thinks they didn't have enough blood. That makes me think they screwed up a test because we had 12 ml from the arterial stick. That should've been plenty.

I'm totally baffled by Jack's milk allergy. When he was in the NICU at Hopkins they thought he had a milk allergy because of blood in his stool. They weren't sure though because I was eating peanut butter & jelly sandwiches every day (it held up without a fridge when I was in the NICU). At the time I was pumping milk for Jack so the peanut butter or milk I was drinking could've gone through my milk to him. That's when they switched him to EleCare then Alimentum. These are formulas for kids with allergies. He did well on these until he started oral feeds and they taste so gross he refused. I pushed for them to try regular formula since we never had a definite answer on the allergies. We eventually got Jack onto Nestle GoodStart and he's still on that and doing great. This is a well broken down formula but it does have milk proteins. Jack hasn't shown signs of an allergy to the formula. His worst rashes were from ice cream and Carvel cake (ice cream cake). Here's my hypothesis....the formula is broken down and I also heat it up a lot so the proteins probably are denatured. Maybe Jack's body recognizes a conformational epitope? This would mean his body recognizes the shape of the milk protein and not just the building blocks (amino acids). The ice cream might have maintained the right conformation and that is what his body sees and reacts to. I have no idea if this is even a feasible explanation but that's the best I can think of.

I put in a call to Jack's GI team at Hopkins. Since Jack is still (almost) in the 3rd percentile for weight I'm a little worried that as he transitions from formula to regular food we'll be really limited in what we can give him. I really need to research food allergies now so I can understand what he can eat that is still nutritious and packed with calories. I'm sure his Hopkins docs will help me understand this better and how to deal with it.

We've dealt with a lot worse but it is a little disappointing to get this news today. I really hope this is the last of it in the allergy department!

Also - on Wed we will go to the cardiologist at Johns Hopkins and get the holter monitor for Jack. He has to wear it for 24 hrs and then on Thursday we'll bring it back so the cardiologist can evaluate the irregular heart rhythms that Jack has. Keep your fingers crossed!

If anyone has food allergy advice we're open to ideas!!!

Vic