Re: Newbie with a couple of questions.

[Guest guest]

,

My son has mito complex 1 and 4. Seizures since 4 months old. He has had

absence and atypical absence type seizures. He also has very poor balance

which in his case is called ataxia. Atlanta has one of the leading experts

in mito disease - Dr. Shoffner out of ish Rite (now Children's

Healthcare of Atlanta). Let me know if you have more questions.

n

Newbie with a couple of questions.

> From: jbowman@...

>

> I am the father of one Bowman who I am searching for a cause

> of his seizures. went through Infantile spasms from 6 months

> to 10 months. Since then has multiple seizure types at 18 months old.

> He is developementally delayed and has no sense of balance. With out

> making a long story out this I'm looking for a Mito specialist on the

> East cost. I live in North Carolina. If anyone has suggestions on

> Hospitals or doctors I would appreciate it.

>

> Also I would like to hear from others who have children with multiple

> seizure types or Lenox-Gastaut syndrome type children.

>

>

>

>

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>

[Guest guest]

Hi ,

Can you tell me more about ? My daughter had also started

seizures at 6 mo. was diagnosised with WEST's but we are still awaiting

results of a muscle biopsy. She was hypotonic(floppy)tone, dev. delayed

, non- mobile, non- verbal, but some sign language, visually impaired,

hearing impaired, reflux, and lots of feeding issues. But REALLY CUTE!!

Gloria

Mom of Angel a

[Guest guest]

,

My son is 9 and has refractory seizures. Unlike your child, he developed

seizures somewhere between 6.5 and 7, but always had a normal EEG. Then

suddenly developed multiple seizure types and Lennox-Gestaut pattern. He has

Complex 1 defieciency. He lost many of his skills (balance, riding his bike,

climbing the stairs, math, reading etc.) in a very short period of time.

Between his drug allergies to anitconvulsants and others not working, we

quickly went thru every anticonvulsant on the market. Thankfully in the past

3 months he has started to regain almost everything with the help of

Felbamate and the Ketogenic Diet.

Laurel