Brayden's neurologist reviewed the most recent brain MRI and noticed a pattern. A pattern that was of concern. The neurologist showed it to the neurogeneticist.
They called us and asked for us to bring Brayden in immediately for blood work.
Brayden went in for blood work today.
Now we wait for the results.
The doctors think he has metabolic disorder called pyruvate dehydrogenase complex deficiency.
I cannot even begin to explain what it means and how the treatment will, should, could go. It is degenerative...it could be an explanation as to why his vomiting has been getting progressively worse as well as his seizures.
We just don't know yet. It may be a long 24-48 hours waiting for the results.
6 comments:
Praying for you as you wait. Waiting can be so hard.
Though I didn't really understand much of that link, I did find it interesting that they recommended beer as a treatment option. I'm pretty sure you haven't tried that one.
This gives me a knot in my stomach. Nice to have something tangible...but the word degenerative is so scary. Praying, praying, praying.
I have been behind in my reading lately...So sorry that you had to go to the ER and that Brayden was having breathing troubles during his seizure. The breathing troubles and the length of the seizures would freak me out too!
Glad to hear that you may have an answer to the seizures and vomiting, but I agree with the DeKorne family - degenerative is a scary word. Praying for you and your family as you wait.
Thank you so much for blogging about Brayden and the struggles that come up on a daily basis. I cannot tell you how much your attitude in the face of trials ministers to me. Your faith is a breath of fresh air!
We'll be praying for you all and waiting to hear the results.
We're sending lots of love from Michigan.
My stomach just dropped as I read this posting. At first I thought that a diagnosis could bring answers, but upon reading about this disease I was brought to tears. I am praying.
I'm so sorry, totally understand the freak out and hopefully they will have some kind of answer for you and he will get a better with these seizures and vomiting. Praying for you, waiting is awful.
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