Emmett has been up since 3am this morning in pain. He has hit yet another flare up -I think I mentioned this yesterday- and his mouth is filled with cold sores. He gasbag very large one on the side of his tongue, about .5″ long.
All morning he cried and we could do little to console him.
Grandpa even stopped by -which typically excites Emmett- but Emmett would even accept a hug from him.
He did do better after his nap and was really well behaved during the interview this afternoon. Believe it or not, he actually wore clothes as well. I’m so proud of him.
I was explaining to the reporter that this is a rarity in our house. Emmett almost never wears clothes. That’s a pretty big victory. Awesome job Emmett.
Back to the point of this post.
We will be back to the immunologist in the morning. In a way, this flare up is well timed because she will get to see how bad it is.
This is where the dilemma cones into play.
We spoke with the immunologist at Akron Children’s Hospital yesterday or the day before. Apparently there is a medication that can stop or reduce the Marshall Syndrome flare ups.
The problem is that they don’t like to use it unless it’s absolutely necessary. That is likely why we are just now hearing about it.
We will get the details in the morning but the impression is that there is risk involved in doing this.
We may find ourselves in a position where we have to decide to do something that has potential risks in order to reduce Emmett’s pain.
How do you decide something like that?
Gavin is on a very dangerous medication called Clozapine. We were in a similar boat with him but under much different circumstances. We had tried everything else first and the life Gavin had before the medication was no a life.
In Emmett’s situation, things are different. We are talking about physical health and not mental health.
Tomorrow is just a follow up and we are supposed to discuss this option, whatever it is.
I wish there was a cut and dry, right or wrong answer. However, this seems to be par for the course……at least for us.
Never a dull moment……
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