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severe myoclonic epilepsy in infancy

Lisa - posted on 03/24/2009 ( 6 moms have responded )

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hi im new to this group,and was wondering if anyone has the same diagnosis as my son did.unfortunatly he passed away in 2002 aged 9.he was one of the first here in australia to be diagnosed so it took us a while to find a name.we d been on most meds and the ketogenic diet with a great success.looking for parents who are or have been through the same condition

elizabeth

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Stephanie - posted on 11/16/2012

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My son has dose syndrome, he has been seizure free for 7 months now but at his worst he was having over 200 seizures an hour, every hour of every day x

Do - posted on 06/13/2012

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Hi,
My son is two and half now and has some symptoms of Dravet. I am new in Australia and do not know how to get the definite diagnosis and good treatment for him. I am living in Geelong, Melbourne. Any advice would be appreciated.

Christa - posted on 07/15/2009

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also known as Dravet Syndrome? My dausghter was recently daignosed with this. She is currently on the Keto Diet. She still has seizures daily. She is doing better though as she was having up to 70 a day at one time.

Mandy - posted on 04/15/2009

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I HAVE SENT YOU A PERSONAL E-MAIL VIA THE E-MAIL ADDRESS YOU SENT.



 



 



 

Lisa - posted on 04/15/2009

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Quoting Mandy:



my daughter has astatic myoclonic epilepsy ( doose syndrome ).






Mary-Alice is 16 now and was diagnosed at the age of 3 .. its hard and i'm so glad to have another mum to talk to. I am so sorry for your loss of your darling son.






We have been told that if mary-alice goes into staus 1 more time then she may not make it out again.We live with this every single day and so do our 5 other children , if she oversleeps i'm almost too scared to go and check on her.






hi mandy,



              thanks for replying.i have to admit i havent heard of doose syndrome but ill look it up.



adam was 8 mths when he had his first seizure he had the mental capacity of a autistic child.at a young age the doctors said his life span may not be good.but after the keto diet and starting new drugs he stopped having them so things looked good other than the severe mental delay.youll have to tell me more about your daughter adam would be 16 now to and i also have another 5 kids hope to hear from you my email is dabba_5@yahoo.com.au

Mandy - posted on 03/29/2009

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my daughter has astatic myoclonic epilepsy ( doose syndrome ).



Mary-Alice is 16 now and was diagnosed at the age of 3 .. its hard and i'm so glad to have another mum to talk to. I am so sorry for your loss of your darling son.



We have been told that if mary-alice goes into staus 1 more time then she may not make it out again.We live with this every single day and so do our 5 other children , if she oversleeps i'm almost too scared to go and check on her.

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