lexiesmom's Discussions
New to forum,I have generalized dystonia,would love advice from you all!:)
could you contact my daughter who was also diagnosed at the age of 12 (3 weeks before she turned 13) and is now 14 and feeling like life will never be good again....... we have been to Mt Sinia in ...
Replied Nov 6
New to forum,I have generalized dystonia,would love advice from you all!:)
Hello deb my name is Irene and I am here as a representative of my daughter..... she is 14 and has primary generalized dystonia as well. I read your segment and felt her pain in your writting. it i...
Replied Nov 6
Winter Cold
the cold makes my daughter much worse she was diagnosed last year and will be hibernating this year!
Replied Oct 12
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could you contact my daughter who was also diagnosed at the age of 12 (3 weeks before she turned 13) and is now 14 and feeling like life will never be good again....... we have been to Mt Sinia in NY and are loking at having DBS in June 2010 if me...
Hello deb
my name is Irene and I am here as a representative of my daughter..... she is 14 and has primary generalized dystonia as well. I read your segment and felt her pain in your writting. it is so hard people dont know what to do when they se...
artane seems to help but not control the symptoms for my daughter the happen intermittenly can be at most 10 days between episodes usualy 1/ day can be 18 a day but without artane was out of control all the time
pink 1 gene? i have not read of that one yet? detials? we are still trying to get a handle on my daughters cause
why the canelation? Sleep study why? my 14 year old is looking at having dbs just started all the work up she need to fail 3 more meds for the insurance to ok the surgery.
the cold makes my daughter much worse she was diagnosed last year and will be hibernating this year!
Dear Dystonia,
WHY HAVE YOU TAKEN MY DAUGHTER? I am so sad and lost and helpless, why why would you take a healthy happy outgoing girl of 12 and turn her into a person who is in cont pain, who cant be alone for fear she will have a spasm and have...
My daughter:
Alexis Johnson
14 dob 10/05/1995 (last week)
female
Paroxsymal nonkinestetic primary generalized dystonia --> non DYT1
Artane, Klonapin, Gabapentin, Vit D, Iron, just started tegratol takes dilauted ketorlac prn pain ativan prn spasm
...
this sounds oh so familar........your symptoms, try the mt sinai hospiatl in NY Dr tagliati, very smart man we traveled quite a distance to meet him and were very pleased....................good luck
DR"S they made my daughter HATE that word, "psych" she was just shy of 13 when her first full dystonic episodes hit her and DR's went staight to "it is conversion disorder" and "she needs a psych eval" "she has a abnormal attchment to you" tehy ha...
I am right there with you! My daughter was diagnosed 14 months ago with dystonia and I feel lost they have no idea the cause or how to treat it. Emotions are a factor but far from the only factor there are a few genetic markers they can look for a...
Living with, or caring for someone with Dystonia? Join to share information, resources, and support with others.
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- my 14 year old daughter was diagnosed 1 year ago with dystonia and i am reaching out to all resources i can find to learn and help her
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