Re: Re: Sound Familar??

[Guest guest]

Hi ,

did not have an EEG before he started having seizures. Our doctor didn't

think it was necessary. He does still have an occasional nocturnal tonic clonic

but they are pretty infrequent. We were able to find a good drug combo that

worked for him with little side effects.

-Steve

>

> Subject: Re: Sound Familar??

> To: polymicrogyria

> Date: Thursday, January 8, 2009, 1:35 AM

> Hello Steve and Kandis,

>

> My son has right sided (unilateral PMG) and

> externally it

> affects the left side of his body, primarily his hand and

> leg. He

> wears a leg brace (AFO) on the left and occasionally wears

> a a soft

> left hand splint to help keep his hand open and the thump

> out, not

> tucked in. We have had 3 EEG's and the last 2 were

> 'stable',

> abnormal but stable. I am curious, and would like to ask

> Steve if

> your son had any EEG's prior to being 5? Your are

> living the fear

> that we fear living...seizures. Presently is as

> smart as a

> whip, but I am always waiting for the other shoe to

> drop.... Does

> your son still suffer from them?

>

> Kandis, We have e-mailed before and I often wonder how you

> and

> are doing. Is he able to tell you that he feels

> dizzy? Are

> his ears okay? I know that when I have a cold, I often end

> up with a

> horrible dizzy feeling, which stems from my inner ear

> (and/or

> sinuses being plugged up). It is just a thought I know

> the

> constant worry...it always lingers at the back of my

> mind....is this

> it? What was that jerking? Why is he staring like that?

> The worry

> never goes away! Has had an EEG before?

>

> Keep us updated and I hope all is well for everyone

>

> ,

> Mom to , right-sided PMG & CMTC - who is snugly

> tucked into his

> playpen in my room tonight......!

>

>

>

> >

> > >

> > > Subject: Sound Familar??

> > > To: polymicrogyria

> > > Date: Saturday, December 27, 2008, 9:43 PM

> > > My son was diagnosed at 6mo. he is now

> almost 2.5 He

> > > has mild

> > > unilateral PMG of the left side. He has tightness

> in his

> > > right side,

> > > mostly his hand and leg. He has met all his

> milestones as

> > > far as

> > > walking, crawling, talking, jumping, etc. He

> recently got a

> > > brace for

> > > his right foot to help him from toe-walking and

> tightness.

> > > He wears a

> > > soft thumb brace on his right hand from time to

> time which

> > > seems to

> > > help his fine motor. Also, his right pointer

> finger seems

> > > to be most

> > > affected it doesn't stretch out as well as

> the other

> > > fingers.

> > >

> > > We have met with Dr. Dobyns and his information

> was very

> > > helpful. He

> > > spoke a lot about seizures and what to expect

> etc. when or

> > > if they

> > > occur. He did mention the most common seizures

> occur at

> > > night and we

> > > would most likely not recognize if he had one. We

> are

> > > worried now if

> > > he has had one. He has been sick lately and had

> funny dizzy

> > > spells

> > > following his sickness.

> > > Does anyone have any advice as to what to expect

> before or

> > > after a

> > > seizure occurs?

> > > How could you tell your child had a seizure?

> > > Should I get an EEG to be safe, heard they could

> be

> > > inconclusive

> > > anyways??

> > > Any answers would be helpful!!

> > > Kandis Froebe

> >