Re: Re: & Dystonia

[Guest guest]

Cyndi,

I'm so so happy they've figured out what went wrong. Our kids really work the

fine print on medical side effects. They could be an entire course in obscure

med reactions for med students.

Its definitely worth a Lifetime movie - but maybe a gritty HBO series would be

even better! Hmmm. Always entertaining to consider who would play you in the

movie!

Sent on the TELUS Mobility network with BlackBerry

Re: & Dystonia

Liz, I don't know why our kids have to be an experiment with everything. Even

the neurologist treating said she had never had experience with Dystonia

but she consulted a movement disorder clinic, and other colleges in her practice

for imput. We consulted 's heart Dr because I thought it maybe had to do

with his heart. At first it presented like a seizure, or severe asthma attack

but then it looked painful and I knew it was not either of those things. However

the ER and his own group of pedicatrician's admitted they had never seen any

thing like this. That is what ultimately made me request a nuerologist. Of

courst I got a new Dr. and not a seasoned one. We really need to get on a

Lifetime Movie with all the shit we go through with these kids. Other parents

need to know how to help these kids since Dr. are experiment.. Im sorry is

not an experiment he is my child and I want the absolute best medical care for

him. I will be doing epsolm salt baths and possibly activated

charcoal to clean this garbage out of his system.

So your daughter has seen this before? Because no one here had ever seen

anything like it and that was scarey. I thought we were going to end up on

Mystery Diagnosis that show were people sometimes go to several Dr's and go

several years before a Dr. happens to figure out what is wrong. I just hope it

is med induced and not hereditery.Cyndi B

>

> >

> >

> > Group the Dr.'s believe that has a acute dystonic reaction to the med

> > Saphris that was used to treat his behaviors. While dystonic reactions can

> > be hereditary and come in the form of Parkinson's disease, 's Disease,

> > MS, etc. Dystonia can also be caused due to meds like

> > Risperidone,Risperidal,Abilify, Seroquel,Saphris, & Phenegan just to name

> > some of the common meds our children take. If the dystonia is Acute Dystonia

> > meds like valium,benedryl,cogentin,and some others are used to reverse these

> > symptoms. However if dystonia is caused by a disease such a Parkinson,

> > the symptoms appearantly do not reverse.

> > Since we took off the offending med Saphris he has not had another

> > breathing attach, with his arm pulled up to his chest so I am hopeful this

> > was med induced. This can be life threatening. If your child suddenly gets

> > muscle stiffening,breathing difficulties see a nuerologist and not a general

> > pediatrician or General practionier. Dystonia can affect just one part of

> > the body or several parts at once and can cause dysphagia,which has had

> > with apiration pnumonia on more than one occassion. I am giving you a link

> > with information about Dystonia. My hope is to keep another child from

> > suffering from this horrible condition while the Dr.'s are not able to

> > figure out what is going on.Cyndi Burns

> > http://wiki.medpedia.com/Dystonia

> >

> >

> >

>

>

>

> --

> *Liz*

>

> Let me win, but if I cannot win, let me be brave in the attempt. - Special

> Olympics Motto-RIP Eunice Kennedy Shriver

>

> " When we long for life without difficulties, remind us that oaks grow strong

> in contrary winds and diamonds are made under pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience. Knowing grass, I can

> understand persistence. " - Hal Borland

>

>

>