Thursday, September 15, 2011

Ty's Test Results from Duke

Ok so i am officially the worst blogger ever but the point is to tell everyone updates when i get them, not to fill you with pointless day to day info.  As most of you know the upstate allergists sent us to Duke Med for some more extensive tests to be done on Ty to see if we can clarify some things.  All in all it was a decent trip, Ty did amazing and I'm glad we went (will sing a different tune as soon as the bills come in I'm sure).  At first it was just a lot of talking (four hours worth) about everything that has happened in Ty's life.  We spoke in depth about all five anaphylaxis and literally every medical event in between and you can tell they are a research facility because they heard every word and caught it if we skipped a beat.  Long story short, they did all of the routine food allergy testing and then they tested for a few things that other allergists don't do.  Everything on the prick test was as it has always been, severly allergic to milk, nuts, and eggs.  Before they checked his IgE levels (remember his allergies are immune system based, not digestive) they told us he will outgrow milk and egg probably in the next few years and would most likely never outgrow nuts.  That statement was the best news I had ever heard at this point.  Every other doctor has told us he would never outgrow milk and that he was the worst they had ever seen.  Although I was excited, I knew in the back of my mind that they would change their tune once the blood tests were in. They sent us home and said they would contact us with the results and more instructions.
Yesterday I got the call.  The good news is that they tested for raw egg and baked egg (has to be baked in a mix at 350degrees or higher) and although his raw egg was still very high, his baked egg was in the 50/50 range.  That being said, he wants us to come back in January and do a food challenge in the office.  He said it could not be done locally because they have a special way to handle and monitor kids like Ty and there was still a good likelihood that he could have an anaphlactic reaction from the challenge.  The good news is this means he might be able to get the flu shot now :)  The other thing he said is that Ty's IgE levels were off the charts for milk :(  Although not many, they have had other kids like Ty.  He said it is likely he will never outgrow them and if he does, it will probably be after college.  I felt like I had been hit by a ton of bricks.  I could care less about baked egg.  I mean if he is severely allergic to raw egg, the last thing I want to do is bake with it and be scared remnants were left on the bowl or spoon, or sponge etc.  And what if my oven didn't work properly and it didn't reach 350?  Anyway, I know it could be worse, I know the diagnosis is better than so many others but at the end of the day it still SUCKS!!!!  God can do anything but I'm not sure that I am equipped to.  The "bubble" that we are forced to live in gets a little cramped sometimes and homeschooling is fine but I would love for Ty to have a "normal" life full of birthday parties, friends, sleepovers, restaurants, school etc.  So for now, nothing changed.  On the flip side, at least it didn't get worse right?  We have the best of the best doctors working with him and at the end of the day if I put my faith in them, I will be let down.  So my faith is in God and I pray He uses us to testify for Him (just go easy on the little man will ya?)

1 comment:

  1. I love you sooooo much... You have handled all of the Ty stuff with more grace and faith than most could muster. Ty is a very special gift. He is teaching us all to pay attention to what we are exposed to on many levels. Too often we take for granted that everyday foods are safe. The truth is, they're not. And neither are vaccines and flu shots. He probably doesn't need ANY "traditional" shots - ever. His special diet actually has the potential to build his immune system far beyond the average person. "Real" food, limited sugar, lots of green, healthy protiens...that's the way to live. ( PS: Uncle Bill has been literally saving lives with "real" food for many years. ) and Ty's amazing attitude about it all is beyond belief. He KNOWS God is using him to teach us all how to be healthier.
    -lots of love-