Infantile Spasms and EI update

First, the good news:

It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.

Now, the bad news:

Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.

In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.

Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).

He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.

From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.

Please keep us in your thoughts and prayers.

First Hair Cut and EI Madness

At the tender age of 5 months I gave Yusef his first hair cut. I didn't get any before shots but as you can see from the previous post it was really quite shaggy. I wish I would have gotten a shot of the back. It was down past his shoulders!

Here's the aftermath. That's alot of hair!



And my new hansome little man.






In other news, it looks like there is a good possibility we are going to lose our EI services. The major organization that provides them here is going bankrupt. They serve about 2600 kids in this area. This just months after they opened a brand new multimillion dollar facility. I'm so upset and dissapointed with them right now.

They've realeased a couple of statements saying that they'll be restructuring and will do everything possible to coninue to help kids. Then just a couple of days later, they said they were going to close a couple of facilities, lay off 70 employees and focus on services for 3-5 year olds.

Needless to say, I'm not putting any faith in the hope that Yusef can continue his therapy with these guys. There are other organizations here but I don't know anything about them. I have the feeling they are all going to see a huge influx of people seeking services. I'm getting on the phone first thing Monday morning to try and figure out where we can get his therapies. Also, I'm going to contact our insurance to see if they'll cover anything if we have to go private. I'm stressin...