Apraxia & Epilepsy

January 19, 2008

Hi all. Wow, this is a busy group. I impressed with the level of

knowledge many of you have, and a little intimidated at times, but

plowing thru the posts and learning much. I'm wondering if any of you

have children with epilepsy and apraxia? Jake has a lesion in the right

frontal lobe of his brain which causes seizures. We were also told by a

neurologist at Stanford University that the lesion is in the area of the

brain which controls oral motor function. Jake was 4 1/2 before we ever

got this information and he had been seeing neuro's since he was 14

months old. I'm reading " The Late Talker " right now and trying not to

be too hard on myself that I didn't act sooner. The focus was so

intense on his seizures as they were hard to control that the neuro

wouldn't even address his speech issues. It was only when we switched

neuro's almost a year ago that we first heard the term apraxia.

Jake is on Lamectil to control the seizures and Namenda to help repair

some of the connections between brain and mouth (in layman's terms).

Since starting the Namenda we've seen a huge break through in Jake's

speech. It's truly been a miracle.

But now I'm learning more about Omega 3-6-9 and Vit. E and wondering if

that might be an option instead of the RX. I'm always anxious to try

holistic approaches instead of medicating him. We've had several

doctors who want to do nothing but write scrips and we've had to sand

firm on more than one occasion. I see a lot of info. about apraxia and

autism but not much on epilepsy and apraxia.

Jake currently has Prompt and Kaufman speech therapy five times a week

for 30 minute sessions and we do Kaufman cards at home for 10 minutes a

day but that's his only therapy at this point. I'm not sure where to

start in terms of alternative approaches for a child with apraxia and

epilepsy (seizure free almost a year now!) and looking for suggestions.

Dylan

Mom to Jennica (17), Jarrett (7) and Jake (5)

(Jake has a static right frontal lobe brain tumor, epilepsy, apraxia and

severe oral motor delay.)

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January 20, 2008

Dylan-

My son had Epilepsy and apraxia, still has apraxia, but outgrew Epilepsy (we

hope). I know what you are going through but do not beat yourself up. My son

started having seizures at 9 months old. He had myoclonic seizures but was not

treated until he turned a year because the pediatrican kept telling me they were

not seizures. When I finally insisted on a nuerologist, as they were happening

more and more often (up to 20 a day by the time we saw the nuerologist) she

confirmed he had epilepsy. It only took him a month to get controlled on a

single med, Topmax. At that time was not babbling at all and had low

muscle tone. Topmax was related to speech problems, so we blamed his lack of

speech on the meds, but when he came off 2 years later he remained seizure free

but did not talk, he was close to 3 then. When he was 18 months old his private

therapist told us she thought he had apraxia. When I looked on-line it sounded

just like . So we started our search for

a therapist that could help our son. Also trying to find out what was causing

all his issues, as he was very delayed. Well we did not find the miracle worker

therapist or reason why was the way he was until was almost 6 years

old. We found out he had a chromosone abnormality causing his delays and severe

global apraxia. We also found a great private therapist who we took to 5x a

week and she got him to start talking. It is a year and a half later and he

continues to progress as well as continues not having seizures.

As far as alternatives, your may want to look into carnaware, many kids with

apraxia have tried it and it is linked to decreased seizures, and can find the

study on line. Also cranosacrial therapy, it done by a good therapist has been

proven to help kids with epilepsy. I have tried both with my son and found

positive results.

If you want to contact me personally with any additional questions I would be

happy to talk. My e-mail address is michelewasikowski@...

Michele

Dylan Whitlow <msdylan@...> wrote: