Jack's treatment plan

I want to post more than just medical updates, but this will be a medical update.

The whole game with all of this is Jack's development. He is so perfect that you would never know there is anything wrong. You would never know that he had 15 seizures today. If they don't stop then at some point his development will start to suffer too. We have got to get these things to stop.

About 3 weeks ago Jack started having little twitches. The doc told us to increase his meds. He's still having twitches. I got it on video and sent it to the neuro and he had us do another EEG, that was Monday. The EEG was normal but he didn't have any of these twitches or spells or spasms while he was hooked up. Here is a super cute video of him dancing while hooked up.



So today we saw the doctor. He said that he thinks the twitching is tiny spasms but without having it on an EEG there is no way to know for sure. Our first step is to increase his meds. We have room to triple his dose so we're going to start by doubling it. I have to call in next Monday and let them know how he's doing.

In the mean time he is also being scheduled for an MRI and a spinal tap. Yep, a spinal tap. They are looking for sugar in the spinal fluid meaning it's crossing the blood brain barrier. The doctor doesn't think this is likely but it has an easy fix. They will do the spinal tap right after the MRI while he's still out. They will also do some more blood work for some more genetic testing. All of this will probably happen in about 2 weeks. The nurse is setting it all up and then she's going to call me.

Hopefully it end there. Hopefully the increase in meds stop the spasms and that's it. If it doesn't then we go back into the hospital for a long EEG. We want to make absolutely sure of what we're seeing before proceeding because it gets really nasty, nastier than it already is. If we confirm that it is the spasms then we'll do a round of ACTH, the steroid that is in our fridge that requires a daily injection. There are a few things that are awful about it and why we haven't done it yet. First, because it's a steroid he will be super irritable and hungry all the time and he won't sleep. We went through that with the oral steroids but I understand that this is worse. Plus he will basically stop developing while he is on it, that's the part that really scares me. But he should pick right back up after he's off of them, he just may need a little early intervention. His blood pressure has to be watched really closely too.

Because we had "success" with the oral steroid it is likely the ACTH will do the trick. If it doesn't they will send us to Houston for a higher level MRI to look at a surgery option. Surgery on my baby's brain. That scares the shit out of me.

So if you're the praying type, please add Jack to your list. So far he's had no side effects to the med he's on now. It just needs to stop these things completely.