[tri-med] Migraines (was 5 month old Trisomy 13 baby)

----- Original Message -----
From: <NanlorW@xxxxxxx>
>>An aside, even after she no
> longer was taking phenobarb, she did have headaches. We always put it to
> stress or a bit of hypochondria. When she was about 19, she started having
> sudden onset migraines that caused her extreme pain.

This is interesting Nan........ especially that it should be raised now.

Alex has been incredibly unwell/unstable the last month or so - he has
barely made it to school one day a week. We still don't know for sure what
is going on - but we don't like it.

I kept him home last Friday and he had a definite tonic/clonic seizure on
me. It only lasted 15 or 20 seconds so I wasn't overly concerned but did
phone the pediatrician and added it to the picture.

Then Tuesday I sent him to school again only to have him sent home because
there are chicken pox in the classroom. (Really looking forward to 2 to 6
weeks of home school!!!)

We went to the shops and Alex was simply looking at something on a shelf
when he fell down. It wasn't a faint because he crumpled, and I don't think
it was a seizure because he did have some protective reflex by the time he
hit the floor (not at the beginning though).

He has had 3 or 4 of these episodes in the last couple of weeks now and I am
still puzzled. The only additional complaint that he has of late is that he
has been having headaches. Its hard to get a real picture of how bad they
are though because he doesnt feels pain as we do........ His head hurts but
its not painful (real hard to get your head around that concept I know!!)

Anyway his pediatrician has suggested that it may be the onset of migraines
and asked if there was any family history. Now thats a laugh because I have
to be one of the worlds worst migraine people :-((

He also suggested abdominal migraines or cyclic vomiting syndrome sometime
ago and I must admit that I dismissed it at the time. (he did improve) I
guess I dont want to admit that Alex may have inherited migraines off
me......... But on the other hand that would be preferable to it being a
part of everything else that is going on with him at the moment. As George
said - migraines are treatable, his other stuff - well we havent found
anything to treat that - YET!!!

Migraines and seizures of course are VERY close cousins. And I guess me
being a migraine sufferer, my mum being a migraine sufferer, plus having a
daughter and sister who suffer from seizures is a strong family history
:-(((  My migraines started at about 9 years of age - Alex is 8.........

>>>The neurologist put her
> on Inderol as a preventative and guess what? All of her headaches stopped.

Oh she was so lucky!!! I have never found a preventative that really worked
and I HATED Inderal with a passion. It made me depressed and angry like you
wouldn't believe.

Inderal is no go consideration for Alex with his other problems thank
goodness because I would have a hard time giving it to him. But then I have
a hard time giving him clonidine because of similar effects - but I do when
necessary. Curiously Inderal and Clonidine are also similar drugs with
similar effects..........

Any words of wisdom?? Its OK I know that I am being an ostrich about this
latest development with Alex.........

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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