Thursday, May 20, 2010


There are all kinds of different treatments that are used in people with CP. All CP kids are not created equal. So what will work for one might not work for the others. ( Like most chronic conditions) Ty had only done botox until we moved to Utah. Then we did phenol and it worked wonders. Bu it only works for a certain amount of time.

Phenol can only be done every six months. It is done under sedation and as it gets closer to the six months the effects of the medicine is gone and his muscle tone returns with a vengeance.

So what happens when it is gone? Imagine having a sore knee. It hurts so bad when you do certain activites. You stop doing them because of that pain. Then they fix it and you can go back to doing what you had done before. Then as time goes on that pain returns.

That is like Ty and his CP. It is always there but the shots help the pain and stiffness go away. Then as they start to wear off the pain comes back.

This makes him CRABBY. Like Super crabby. He falls more and things get WAY more tragic than they were a week ago. He hits his head more. He won't eat and the already way bad sleeping is even worse. He is up super early making the already tired kid even more crabby when it comes to falling.

After a week of non stop crabby pants we decided to make sure it wasn't his ears and went to the pediatricians and got a clean bill of health. She then suggested just MAYBE, JUST maybe it is his CP and that his muscles hurt at night.

Dallas and I had talked about it and Dallas had suggested that maybe he was more frustrated by his muscles and his inability to move easily so we went with both suggestions and called his CP doc. She called in a script for Bacolofen.

I have been weary to try it but thought heck, it can't hurt right? And hurt it DID NOT! It was hard getting a pill down him the first night. He cried and I had to force it down. The next try we just put it in the straw of his drink and it was fine. Last night I tried a bite of Ice cream and it worked like a charm.

Not only did he sleep great but he slept in his own bed.

He slept through the night.

I checked on him a LOT. I hadn't heard a word and was a little nervous. But he did sleep in his own bed.

Day 4 and he has slept AMAZING. I think we might just have to keep it up.


singedwingangel said...

Praise God. Bless his heart you know how horrible not sleeping had to be for him.. and you.. Nowmaybe he can have some kind of normalcy..

Steve Cook said...

I am glad it is working for him! We have had great success with Baclofen. I don't know if you have the Apothocary pharmacy there, but we get ours there and they compound it and give it to us in liquid form with strawberry cream flavoring, and Lucy actually enjoys taking it.

Looking for Blue Sky said...

Good news! i tried it with Smiley but it didn't really help - here in Ireland it comes in a liquid, it must be possible for you to get it like that somewhere.

Barrett said...

Nancy- if you find a compounding pharmacy near you, they can call to these other places and get the recipe- I'm pretty sure Children's Mercy compounds the baclofen and they give out their recipes all the time.

Josephine said...

We started on baclofen a couple of months ago too, only after the doctor practically threatened that if we didn't do something then something bad was going to happen, and it has been a wonderfully and surprisingly excellent experience for us so far!! I'm glad to hear it's doing good things for Tyler too. Ours is a liquid compound too, and Avery doesn't mind taking it at all because it tastes good. Cherry flavour :)