We took Chris to Children's Hospital yesterday to see an allergist. The whole allergy thing with him is so strange. He seems happy to eat whatever we give him, yet when he ate eggs (happily), he broke out in hives. The hives were only where he rubbed the eggs on his face, and he had no internal reaction at all. Then we avoided eggs for 6 months and tested him for eggs and nuts, and almost everything came back somewhat positive. Of course we haven't given him nuts, but he'd had some of the things he was tested for (coconut - tested positive, eats regularly). He doesn't have any allergy symptoms. Strange.
Meanwhile, Chris has had 2 spots on his back for most of his life. They're usually flat and brownish, but flare up and look kind of like blisters. They don't flare up very often, and we've been kind of at a loss to figure out what makes them flare up.
So we went to Children's. What an experience. I felt guilty for even being there. All the other kids just looked so sick. Everyone we passed seemed to say something about how happy or healthy Chris looked. We get people saying he's happy a lot, but nothing like this. He was just such a contrast to the other kids in the allergy room. Probably because, despite all his "allergies" he can eat just about anything, and does so happily.
Long story short, the doctors are fascinated by him. The big shot dr, who has written the book on peanut allergies, called in all the residents to look at Chris. He scratched Chris' back with a pen (with the ink retracted), and showed them how to make the spots flare up. He showed them that when he made an X on Chris' back, it turned red instantly, and stayed that way. Everyone stared and ooohed and awwed, and Chris smiled and waved and said hi to everyone. He just loved all the attention. The Dr. had us come back in a month so the fellow we saw would get to see the "interesting" case. So while I was feeling guilty for taking up the dr's time from all these kids who look malnourished, we seem to have brought them the ideal teaching case. No real panic or sense of urgency, but a fairly obvious diagnosis of a rare disease that could have far reaching implications.
They said he has mastocytosis, which apparently means he has too many mast cells (which are allergy cells). That's what the spots are. There are two kinds - skin and systemic. We're hoping it's the skin kind, and limited to what we've seen. The Dr. seemed to think it's possible Chris isn't actually allergic to anything, but has these extra allergy cells on his skin, which make him break out when certain things are on his skin. He said not to worry too much, and to certainly let him keep eating anything he eats now (which is everything but eggs, nuts and shellfish). They did bloodwork to see if it's systemic, which wouldn't be good. But we're hoping it's the skin kind.
Interestingly enough, as we left the dr's, John mentioned that he has most of these symptoms too. Seems that the disease is genetic, and if John has it, it certainly hasn't affected his life, so that's all good.
The other interesting twist, is that I've been assuming he has the allergies that my brother has, but it seems that may be completely wrong. It's likely there's absolutely no link between my brother's allergies and Chris's stuff (assuming it is the mastocytosis). Also, some people have wondered if the allergies wouldn't have happened if I had breastfed exclusively or longer. In his case, it wouldn't have mattered at all - this is just something he was born with.
We have a follow up appointment in a month to review the results of the blood test. We'll see how that goes.
Week Twenty Two of #45: Read. Act. #Resist
2 days ago