[tri-med] Re: I need advice on seizures

----- Original Message -----
From: "Mark and Jayne Wright"
> Karen.....you got me thinkin' now.  I asked Nick's neurologist if low
blood sugar caused his myoclonic seizures because he only has them in the
morning when he is waking up.

Ok I am not saying that your doctor is wrong - but the early morning issues
were the give away for Alex. In the mornings he was just sooooo irritable.
Stagger everywhere and when he wasn't irritable he would be lethargic - just
not himself. I even went to the extreme of taping these early morning
episodes only to be told that he can't be a "morning" person. But give him a
breakfast loaded with sugar and he was fine.

Don't ignore your gut instinct - its easy enough to do a simple check.
Borrow a glucometer from a diabetic friend (usually easy enough to find) and
test him yourself. The owner will be able to tell you the low figure in the
US. Americans use a different numbering system to us Aussies sorry - but
with Alex if his blood sugars are lower than 4 we KNOW that there is a
problem. 1.6 is critical but for Alex he is normally unconscious by then
anyway.

You have probably heard the story of Alex's "official" testing for
hypoglycemia but the short version is that the GI when I told him that I
suspected a problem wrote a lovely letter back to the ped telling him I was
just neurotic (his exact words). Thankfully the ped believed in me and sent
us on to an endocrinologist - I had concerns about his growth anyway. At
this point we still didnt know about the T-18.

The endo agreed with the GI and wrote back to the ped saying he would do the
test to "humour" me. And he meant it - so much so that when the test was
done he left the hospital - he really didnt expect it to show anything.
Unfortunately for Alex within 4 hours of starting the test he was obviously
going hypo and they couldnt reach the doctor - because he had left the
hospital. As a result Alex fitted and went into a hypoglycemic coma and dear
old mum went ballistic :-(( (I am NOT a pleasant person to be around when I
am like that believe me)

Treating it is easy enough, provided that you know that its there. For Alex
they had me try raw cornstarch first (you add a spoonful to the last feed of
the night - about 11) Unfortunately raw cornstarch and g-tubes are not a
great mix so I eventually opted for continuous overnight feeds.

In Alex's case they dont know why he is hypoglycemic - he isnt growth
hormone deficient and he doesnt overproduce insulin - hence the reason its
classed as idiopathic hypoglycemia. All we know is that he can't convert
stored energy in his liver into energy that he can use. He does however
convert fat to energy, just not fast enough (he produces ketones) It was
just one more piece to the puzzle though and it was much later that we
learnt that he had major problems with the hypothalamus - the "supreme"
gland that controls things like hypoglycemia, apneas etc etc. What was a
relief to me was that it wasn't seizures (and yes Alex's seizures were
usually early morning or right before he was due to be fed)

I know of at least one other T-18'er that had hypoglycemia that went
undiagnosed for a long time. And its easy with our kids because we do feed
them all the time and on a fairly strict schedule. Unfortunately untreated
hypoglycemia can have long lasting effects - including brain damage. It can
also lead to diabetes believe it or not - and there are a few older triers
with diabetes.

Alex has improved a lot as he has gotten older, but even now as soon as he
opens his eyes he knows he has to have a glass of juice. And we continually
ply him with juice throughout the day.

Lately I have noticed that his sugars have dropped down again, not hypo but
lower than normal - why we arent sure. I picked up another set of lab test
forms today - we are double checking his thyroid function at the moment just
to be safe.

My point in all this ramble is simply to say trust your instincts. Its not
hard to do spot checks, and the official test for hypoglycemia isnt all that
hard, no food :-(( and bloods every half hour for the length of the test
(the length of the test depends on the age of the child). But they take
those bloods via a canula so its only one stick. Plus urine samples as often
as they can get them (to check for ketones). It is a day stay in hospital
though.

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

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, 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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