Biopsy Results

I've been a slacker about writing this post, seeing as our GI doctor called us last Wednesday with Max's biopsy results....but it was a busy week at work and definitely a busy weekend at home.

Anyway, last Wednesday Dr. Patel called me around noon, and asked if I was ready for a surprise. All I could say was "Oh no...." as I thought that maybe he was going to tell me that Max didn't have CSID and we were dealing with some other crazy issue! Thankfully he said "Just kidding, it's really not a surprise...." and proceeded to tell me that Max was absolutely textbook CSID. I breathed a sigh of relief then, just because I knew what we were up against 100%. Not that I really had any doubt before, but it's always good to back what you know right? And yes, I was hit with a moment of sadness that Max didn't dodge the bullet of a more dietarily difficult life, but I was at least prepared (unlike when I got the call with Jayson). And now I know for sure that my two boys will be forever bonded--not too many other people are ever going to understand what they go through every time they want to eat something!!

For those of you who are curious, here's a comparison of my boys' enzyme levels. Keep in mind that Max was almost 4 months old, and Jayson was 17 months old. I don't know exactly how much age factors into the equation (it's not like they are really ever going to get massively better) but I do wonder what Jayson's levels would have been at Max's age.....

*Sucrase: Jayson=0, Max=0, Normal=50+
*Palatinase (part of starch digestion): Jayson=0, Max=0, Normal=10+
*Isomaltase: Jayson=33, Max=21, Normal=100+
*Lactase: Jayson=19, Max=13, Normal=15+ (I will note here that Jayson struggles with lactose intolerance despite his "normal" level)

And there you have it. We are oh so curious to see what mutation(s) Max carries for CSID once they process his blood sample, although I don't know if there is a lot of research as to what mutations cause what symptoms in CSID. Maybe that's something that should be tackled next in the CSID world. Not that I need any more projects on my plate, but hey, it would be well worth having it out there in my opinion.