may have to end casting...

[grace]

Two weeks after botox we began serial casting. Botox didn't help much. Week one of casting helped some. Week two...cast needed repairs after two days, then when we took it off on day six he had a rash where it rubbed. but gained some range. Cast #3...this is its second day. it is rubbing the sore spot but not too bad pain wise. but, he is turning his foot out and flicking from the hip and is complaining his knee hurts on the outer side. a 7/10. We're icing it and trying to alter his gait but may have to take the cast off. I'm sad if none of this is successful in the end... hoping he makes it through . we need a week four if we can and then ....

he's being casted for an AFO for BOTH sides now. so, right hemi officially out the window. Thanks to the casting, right side is now improved but left the left side in the dust and it is now worse than the right. hohum.

And school is discouraging. okay, now this is a vent. sorry. His teacher is great but he's slow to respond and is always on the previous subject and therefore missing the current subject so he is not doing well. failing many tests. sweet lady is giving up Thursday lunches to help him one on one and photocopied his work for me to help at home. He gets it if you repeat a lot and teach one on one but not in a class setting.

you know, i went out after school and was asked by someone who has known him for 7 years why he had a cast on. I explained to stretch his muscles as he has cerebral palsy. She was shocked. DIdn't realize anything was different with him.

I'm grateful. He does seem so fine. But it's those behind the scene struggles. he's really down about the additional AFO. But, who do you vent that to? as a kid I mean. And he's in pain. And discouraged with his marks and always being last to answer things... and feeling like he isn't contributing anything worthwhile in academics or sports at school... just a downer. am sure it will pick up and i'm grateful his teacher cares.

you know, i had somewhat of a break with my kids. feel sad to have to go back into all this.

anyway, thanks for letting me share.

[Denae]

(((Lucinda)))

Hidden disability is so hard for our kids. People just don't understand, if you look normal you must be normal... Give that big guy a big extra hug tonight.

[mpalmer118]

How discouraging for you both. I am sorry that Matt is having such a hard time right now.

Rachel has similar frustrations at school. She is always a step behind everyone because of the vision issues. Have you been able to determine if there is a physical cause for him lagging behind? For example with Rachel one of the issues is that it takes longer than most to get her desk prepared. So during subject changes she would still be trying to find something in her desk while the class was already moving on with the subject. Placing an aide in the classroom has helped enormously for her.

It seems like there is never an easy answer.

[fireweed]

dear grace,

not sure, but i thought i would mention to you that dystonia makes casting and bracing tough tough.

in addition to rubbing against the cast w/ the spasms, the spasms travel. when you prevent the spasm in one place w/ the cast, it may travel to nearby muscles.

hope things get easier.

fireweed

[grace]

took the cast off this morning. Knee is in a lot of pain.. must have strained it. or twisted it??? We won't continue casting. He didn't get very far in spite of botox and casting so I'm discouraged. getting AFOs made for both sides and considering what else to do. appt next week.