Dystonia questions - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 2 Old 07-25-2009, 10:17 PM - Thread Starter
 
gsmom's Avatar
 
Join Date: Jun 2005
Location: By Lake Superior
Posts: 408
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Reese and I went down to see a physiatrist in St. Paul yesterday who diagnosed Reese with dystonia. His right side tone fluctuates and the physiatrist feels that is due to dystonia rather than spasticity. Reese was super wiggly and moving all over the place which she said was dystonic movement as well. I kind of understand dystonia as I've seen it with kids that I work with, but I have a few questions. . .

1. Can a child come out of dystonia at certain times? Reese will lay on the floor or be in our laps and wiggle, wiggle, wiggle (dystonia, now, I guess), but when we put him in his little seat or somewhere else, he stops with the movements. There are times that I feel he can not "come out" of the movements and the dystonia diagnosis makes sense then.

2. Has anyone done botox with their kids who have specific dystonic muscles? The phys talked about doing botox on his arm and calf if it becomes painfully tight.

3. Anyone tried meds for dystonia? At what point in time did you choose to try meds? I don't think that Reese is at the point that we need to do anything about it other than know about it. It's not causing pain and does seem to delight him at times.

4. Can I attribute this new diagnosis to progression? Obviously his brain is affected, but does this mean that the movement centers of his brain are starting to deteriorate. I know mito is progressive, but this is a new "deterioration" symptom if that's what it is. What else would "cause" the brain to change that way?

Thanks for any info!

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
gsmom is offline  
#2 of 2 Old 07-27-2009, 10:02 AM
 
lightheart's Avatar
 
Join Date: Jul 2005
Location: zone 6b
Posts: 2,374
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I can't answer your questions but can bump this up to the top in case someone can.
lightheart is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off