From: my_special_son2 <my_special_son2@...>
Subject: [cerebralpalsy] Re: can anyone relate?
To: cerebralpalsy@yahoogroups.com
Date: Thursday, December 11, 2008, 2:37 PM

You might ask your son's docs if he fits a dystonia diagnosis. I was
told my son has some dystonia since his tone varies. I was told that
children with dystonia are very normal toned when sleeping. But he
has a lot of spasticity in his legs too and doesn't completely relax
when sleeping.

I was told there were meds for dystonia by my son's Ortho, but his
Neuro (the one who would prescribe the meds) didn't feel they would
do him much good. I agree that they weren't a right fit for us as my
son is pretty mobile through combat crawling and doesn't seem to be
in pain.

My son, Joshua, just turned 5 and just this past year has developed
his defensive reflexes to keep from falling when prop sitting and
climbing. Sounds like Zak is progressing well.

That's great that Zak is signing -- we're still working on
establishing a good form of communication. Right now I interpret his
needs (which is a hard habit to break), but we're trying to make
progress with PECS.

Take care,
Lisa
--- In cerebralpalsy@ yahoogroups. com, "Sarah" <matthew_krug@ ...>
wrote:
>
> Hi, my son Zak is 3 years old and due to a very traumatic birth he
has
> cerebral palsy and a brachial plexus injury~ but he's the cutest,
> sweetest little boy :)
> I follow the yahoo groups closely but don't always have a chance to
> type ( I have a 22 month old who likes to "help" and I'm busy with
> Zak... you know how it is). We'll I think the professionals have
> decided Zak has Athetoid and/or mixed CP and I know every person is
> different but I was looking to relate to someone about something :)
> Zak has flexuating tone, sometimes he stiffens up and other times he
> has trouble supporting himself, he uses a (kaye reverse) walker and
> AFOs and does pretty well, most of his walking issues seem to be
> balance and stamina issues. He points his toes hard and AFO's barely
> correct it when he's excited, but he doesn't have much spastisity~ i
> don't think. Zak can sit in a long sit and pivit and/or scootch
> around, sometimes, but other times he rockets out of it (like he's
> falling or extremely uncomfortable) . Zak really didn't have any
> balance reflexes until recently and now they seem to be minimal and
> more learned. Zak uses sign language to communicate, but does have a
> few "m" and "b" sounds and we just weaned him off 100% tube feedings
> less than a year ago~ eating is still a bit of a work out for him.
Zak
> is smart, but over 50% delayed in all physical areas, and his left
arm
> has a brachial plexus injury and is partially paraylized and the
> muscles are tight.
> Ok i'm done rambling... can anyone relate to Zak? I do better when I
> understand things and can relate to other situations.
> thanks
> Sarah
>