Infantile Spasms

I've been putting off putting this up on my blog. Not because I didn't want people to see it, I actually want people to see it that are clueless and wondering if their baby has the same thing, it's just a hard thing to watch since I know what it was doing to my little mans brain. Ok, keeping you out of the loop, so let me bring you in. I've been reading a lot of posts on the facebook group I'm a part of, the group is mothers of infant stroke survivors  It's been such a great resource for me and I'm sure so many others. Well the post I seem to be reading the most about lately is infantile spasms and what do they look like. Like I said, I've been meaning to put this video up in my blog but it's been hard to bring me to it. When I was going through the first weeks of finding out about Karsen's stroke I happened to stumble upon a blog that helped me tremendously. I was determined, when I started my blog, to help other people as well. You can feel so lost, alone, and overwhelmed when you get the news your baby suffered a stroke. I feel I've done an OK job of informing people on Karsen's cp but I havent' touched on his IS much. So, with that said here is a video that Kuper shot for me while I was holding Karsen. 

This was the start of the IS. I believe they had been happening for almost a month by the time we realized it was something to be worried about. I couldn't express how important it is to know that each child's IS looks different. That's why we weren't sure if Karsen had it or not. His eyes never rolled back like all the other videos we had watched. As you can see his are pretty subtle. If you're even having a hard time spotting it, he has a few of his "spasms" in each clip. His arms go forward and up and his head lunges forward. I also notice he seemed really out of it when he was having his cluster of them, he sometimes would look confused. So, keep in mind, each babies brain operates differently which can make each symptoms appear different. At the time of this video Karsen was having around 4-5 clusters a day. Ok, have I lost you now? I would be confused reading this. With infantile spasms (IS) they have a cluster of spasms, I remember Karsen's longest cluster was over 20 minutes long, He would generally have a spasms every 20 seconds or so. Before we had stopped them with his third different med, he was having around 9 seizures a day (that we saw, not sure if he was having them in his sleep). Infantile spasms is a form of epilepsy that only manifests in babies age 0-2. If the infantile spasms aren't stopped they turn into another form of seizure. Infantile spasms are very hard to treat, you have to be very agressive to stop them. Why? They can cause mental retardation. They are very scary. Looking at the video you wouldn't think they were a scary form of seizure but they are. Karsen used his affected arm a lot more before he had infantile spasms. We believe they caused additional damage to his brain making his arm more affected than it was before. We were told, at the start of his therapy, that his case of cerebral palsy was very mild. Now, reassessing him, we've been told he has a more moderate case. So, get to a neurologist ASAP if you think your child may have IS. When I mean ASAP I'm saying if they tell you their soonest appointment is a month away don't wait, take them to the hospital to get an EEG. Fight! You'll have to, unfortunately. Try to get them on video. We ended up sending the first video to our neuro which in turn got us an appointment for an EEG two days later. I've said this before and have heard a few others in our similar situation say "I can handle the cp, what I can't handle is the seizures" it's so true. So now you can understand why I am so ecstatic that Karsen has been now seizure free for over 2.5 months! 

I hope that this can help any of you out there with a milion questions like I had. This has always been my goal, to help others in similar situations. It can feel like your alone but you're in fact not. I am happy to answer any questions. Shoot away. I am an open book.