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Hello from Germany

 
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Yvonne



Joined: 02 Nov 2006
Posts: 2
Location: Germany

PostPosted: Mon Nov 06, 2006 11:45 pm    Post subject: Hello from Germany Reply with quote

Hello, my name is Yvonne i am 35 y and i am from Germany.
My english is not very good ( it's just i learned in school 20 y ago Embarassed),
but i will try to talk with you.

I am searching for informations for my sister, because her 15 y old son Pascal has MWS.

When he was born the doctors only knew that Pascal has epilepsy and Hirschsprung Desease
and he was intellectually and physically handicaped.
Pascal couldn't crawl, couldn't sit, couldn't eat alone, couldn't speak,...
but nobody knew the name of his handicap.

He get "Liskantin" and "Orfiril" and than he had over 12 years no epileptic seizures.
But 2 months ago, the epilepsy comes back.
Of course many examinations followed, and since 1 week we know that Pascal has MWS.

Now i am searching with the internet for sources and websites to get more informations, because my sister (Pascals mom) have no internet.

Our most important question is: Why has no doctor recognized MWS for 15 years? There were so many medical examination, so many tests and Pascal often stay in hospitals... why has nobody recognized MWS?

Best regards,
Yvonne
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Deby



Joined: 07 Dec 2005
Posts: 5

PostPosted: Wed Nov 22, 2006 6:33 pm    Post subject: Reply with quote

Hello Yvonne,
Your English is fine, so don't worry about posting here.
I hope this information is useful.
The cause of MWS was only discovered in 1998, so anyone that was born with the syndrome before that would not have a clinical diagnosis for the syndrome. Once the cause is found, it takes a long time for others in the medical fields to learn of the syndrome and then be able to diagnose it, especially because the syndrome is so rare.
Perhaps the seizures reoccurred because as he grew the medication wasn't strong enough to compensate for his size. It's the same as not giving a child adult strength Tylenol, the dosage changes as they grow in size.
Deby
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Yvonne



Joined: 02 Nov 2006
Posts: 2
Location: Germany

PostPosted: Thu Nov 30, 2006 3:37 am    Post subject: Reply with quote

Hello Deby,

wow... thank's a lot for the compliment Embarassed

thank you for all this information. Now we know, why nobody couldn't say what it is.
When the seizures reoccured Pascal was over 6 years completely unmedicated. And without seizures.

Now he get Ergenyl (Valproin) and four days ago the EEG was without pathological(?) findings.

We are so happy. All the fears which come with the reoccured seizures... all the worries Pascal could unlearn all the things he learned in the years ago...
but now he is himself again.

In january Pascal will get a Botox-Therapie because the spasticity.
Two years ago he get also Botox and thereafter he learned walk.
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