Sooo thankful to have given the last ACTH shot, and especially THANKFUL the spasms are gone. Still praying for no relapse though.
Today we had our first evaluation with ECI (early childhood intervention). They are a state program that provides therapy to babies and kids with certain diagnoses. Babies with a diagnosis of Infantile Spasms are automatically accepted. Basically they came to our home, asked a lot of questions, played with Z and asked a lot more questions. Then, basically they grade him in certain categories. Like I mentioned before, I was certainly in denial about his development. If it weren’t so wonderful seeing how much progress he has made in such a short amount of time, I’m sue I’d be in tears at his “grades”. He is really, really behind. Plus they want his hearing checked. He can definitely hear some things, but not others. They don’t know if it’s his hearing, remnants of his recent ear infection, or a neurological condition. So now we get to go to an ENT, and certainly not the one we saw before who didn’t do anything. I’m trying to stay positive, because he is spasm free, and in the short time since then, he has made great progress. It’s just hard to hear out loud how far he is from where he needs to be. But I know he can get there, and we’ll get him the help he needs.
I was watching an episode of Life in the ER on Discovery Health channel. The show has nothing to do with seizures, but one of the docs said something that stuck with me. He said “Prepare for the worst but hope for the best.”
So, even though Z has been doing well so far on the wean, I decided to lookup something that the APRN and resident had mentioned the other day. I’ve always known there is a good chance Z will go on to have other seizures as he gets older. But, I thought they were the more manageable type. But at our clinic visit, Lennox-Gasaut was brought up. I remember reading briefly about it, and that it’s not good. But decided to read up about it. It’s very hard to treat, has terrible seizures (the kind where you just drop) and can become drug resistant. It usually begins around age 4.
So, now on top of praying that Z gets through the wean, I’m praying he never ever gets Lennox-Gastaut. Ugh. Sweet baby Z has been through too much already.
About two out of ten children will develop Lennox-Gastaut syndrome after having West syndrome (infantile spasms).
I tried to shorten it, but it doesn’t seem to be working. Just watch the first 20-30 seconds and you’ll get the point. 😉
Baby Z met another milestone he hasn’t met before… he grabbed his toes! Just the left side so far, but it’s still a new milestone, and super cute. 🙂
I decided to email our neurologist with a couple smiley pics and the video of baby Z rolling over. I didn’t want to bother her but I wanted to share some good news.
A few minutes later (on a Saturday morning), I got a short but sweet response that confirms we have the right doc! I love that I can call or email her when we have questions or problems, but it means a lot that she responds to a quick video of my 8 month old rolling over for the first time, and in all caps with 3 exclamation points, and then thanks me for sharing. 🙂
Thanks for sharing!
If you remember, there were a few days that Z was previously inconsolable on ACTH. But, then, it was as if the medicine miraculously did what it needed to do, and then he was fine again. He started smiling, interacting, gaining milestones. It was amazing.
Then comes yesterday, the day I had been dreading: the wean. Z only went down 10 units on his meds, so I was nervous but at the same time, not really expecting anything to happen at this point. But last night he was up a lot, inconsolable at times. I couldn’t help but worry that somehow whatever had been done at the high dose was coming undone. No one seems to really understand how or why the medicine works, so I don’t know if that could even happen like that. But it’s where your mind goes when you’re deliriously tired and afraid.
But then we both finally got a little sleep and are both feeling better. And then…
Z rolled over from back to front for the first time ever. And then… he did it a second time. Yay!!!!!!!!!! Go baby Z! It seems like such a small thing to most. But, to me, it’s huge. HUGE. It brings tears to my eyes. (Well, to be honest, it brings tears streaming down my face.) I so totally needed to see that this morning! 😉
Baby Z is an AMAZING boy! I love that little guy!