CP clinic tomorrow

[alizesmom]

Alize goes to CP clinic tomorrow (oh joy, another 2 hour drive). They are going to find out that spasticity clinic messed with his baclofen and added artane. Makes me a little nervous though I'm not sure why. I think I'm just tired of so many doctors who each do their own thing. They're all nice but do they ever talk with each other? Or at least read the notes on his chart? :confused: Guess this is sort of a vent but we seem to be headed for a visit at the hospital every week right now (remember a 2 hour drive in good traffic). Oh well, wish us luck. Karen

[DystoniaGal]

Karen

If he is truelly dx with dystonia, artane or sinement are the first meds they try. For me artane makes me worse but sinemet has been a god send. Was Alize dx with dystonia by a movement disorder specialist or just a regular neuro?

You sound as though you don't have a team that is talking to each other, that is the key to success. Trying to get all healthcare in an interconnected system where they work together.

Don't think about the drive, try focusing on the positive, you are doing what is best for Alize.

Suzie

[Trishmomof4]

I hope his appt. goes well and the docs get better at communicating with each other.

[mpalmer118]

How did it go?

[alizesmom]

No problems with the med changes, I guess they read each other's notes. Big problem was that we had their wheelchair expect check out Alize's chair. Good brand but it is the wrong insert for his comfort and support. Makes me want to strangle the guy who ordered it. It's only 1 year old so Alize's assistance card may not pay for replacement. Oh well, what's $1500.00 out of the family budget. :rolleyes: Karen