Micah update

 So Micah saw the allergist on Wednesday.

Once again, it didn't go as we hoped.

To us, it seemed that the best that could happen at this point was to get a list of things he was allergic to and remove those items from his diet. In some people with EE (Eosinophilic Esophagitis) doing this puts them into remission. And if they continue to avoid these foods, they tend to experience no issues.

Upon doing more research, we have found that this is less likely than it seemed at first.

So perhaps we shouldn't be so upset to get a list of ZERO items that he is allergic to?

Well, I admit I was upset. I wanted an easy answer. But, really, I haven't been praying for an easy answer. I've been praying for THE answer. I've been praying for them to finally figure out what is actually wrong with our child so we can do what we can to help him feel better. 

So I guess I want the truth. Even if I don't like it or it isn't easy. 

Had they said he was allergic to something, then we may have thought we had found the easy fix- but really would have been barking up the wrong tree again.And further delayed actually making progress. So, really, this is good. This encourages us to keep seeking the truth.  

It's just that what we are finding isn't encouraging that this is going to be quick or easy.

But that's okay. We have faith. We're going to get to the bottom of this. And we very much appreciate the prayers!

Micah was hanging out on the table watching home videos on my phone. I couldn't use my phone to take a picture without taking it away. So he's not quite as cute like this as he was like this laughing at videos of himself and Selah. But he's still cute!

He wasn't very cooperative with me taking a picture at this point. They had just marked up his back and then scratched him with a good number of items. They now (as compared to when I had allergy testing done years ago) have 8 tests on one...thing. I don't know what it is called, but instead of scratching for each item separately, they can do eight scratches at once. It's much quicker! Especially when you are trying to hold a "baby" still! They tested a lot of items-I would guess around 60? If you click on the picture, it becomes larger (works for any picture on the blog) and you can better see all the red spots. Unfortunately, the only thing that is an actual welt is the histamine. That's the control, to measure the level of the reaction.

Like I said, nothing showed up.

Of course, this means virtually nothing. One problem is that he is so young, so allergy testing is far less accurate. At least when looking at negative reactions. I have no idea why this is, I haven't had time to research it yet. Another problem is that the reaction an item has on the skin or on the blood is not necessarily the same way it reacts to the lining of the esophagus, stomach, or intestines. Micah's GI doctor has made this very clear starting at his first appointment with him about 8 months ago. At that time, I had expressed my confusion with the fact that we see a reaction if he eats gluten or dairy, but they had done the blood test for both items and it was negative. 

What I'm trying to say is, there's still something causing a reaction in his esophagus. And it looks like it's a guessing game of trial and error at this point to identify the culprit(s). Still haven't heard back from the GI doctor as to what the next step is. However, I did have the fortunate experience of talking to someone today at the homeschool co-op we belong to that has a child with this same thing!! I got tons of info from her which was great. Some of it was less than encouraging  but I'm kind of glad as I think it really helped me to lower my expectations. I think I'm at the point where I realize this could be really bad. But it also could be not so bad. And until we hear more from the doctor, we just need to educate ourselves as best we can and be prepared for the different avenues this may take. Her recommendation is to travel to Cincinnati to see the specialists at the Children's Hospital there. They have had this diagnosis for 7 years and finally switched down there- after not seeing any progress in his condition here- last year and he is doing so much better! I believe the entire GI unit there is dedicated to Eosinophilic disorders. Of which there is only a handful, and they are doing tons of research and seem like they have a clue as to what the best way to proceed is. So I think Bryan and I are in agreement that once we both feel comfortable with this diagnosis being accurate, that we will look into getting him in with a doctor down there. It's "only" a 5-6 hour drive. Small price to pay for someone to actually be able to help your child! We'd much rather he saw a doctor who specialized in this rather than one who has seen a case or two. (I have no idea as of yet how much of this Micah's current GI has experienced. But it's surely not as much as any of the doctors down there!) Hopefully we will have some more answers from his GI doctor next week.