[tri-med] Re: seizures

----- Original Message ----- 
From: "Holly McCormick"
>> What happens is he will suddenly just reach out and up, not a
> jerk just a movement.  Sometimes he will turn his head at the same time,
> but the movement and head turn are always the same and the head movement
is
> in the same direction every time.  When my 5 yr. old nephew saw him do it
> he said, "Morgan wants a hug.  He is trying to hug me."

Holly,
I am so sorry that Morgan has this additional worry. I know that you don't
complain - but it must still hurt. I am sending YOU a hug!!

As you know Alex has similar behaviours but in his case they aren't seizures
(well they don't show up on EEG's). Something I know I am grateful for. Mind
you he has now been diagnosed with classic migraines, and of course
migraines are a type of seizure. I guess I was hoping that he would miss out
on that little inheritance.

Do you think they will want medicate? After dealing with Mandy's seizures
all her life I am ultra conservative with seizure meds (as you know). When
we thought Alex was having seizures we had long discussions about meds and
opted not to medicate and just watch, reserving medication for the time when
they became severe or started interfering with his quality of life. We
figured that the effects of the seizure meds were nastier to his brain and
development than the seizures.

Having said that if they do decide to medicate I am with Mary (and I know
Fawna will agree) - try and avoid phenobarb. Nasty, nasty, nasty med. Better
as a last resort than a first try.

I am also not much in favour of epilim. Mandy did really well on a teeny
dose of tegretol. Alex has tolerated Vigabatrin and Gabitril with minimal
side effects to his cognitive state. He did of course develop the visual
problems with Vigabatrin. Gabitril is the same class of drug, supposedly
without the visual problems. Mind I think you still can't get Vigabatrin in
the US. (Chris are you still getting Jo's from Canada??)

Sending you huge hugs sweet - and thinking of you often.

We can not change the wind. But we can change the sails.
~Ghandi~


Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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