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

----- Original Message -----
From: "Christine Nugent"
>>>I need advice on how some of you have managed
> seizures with your kids.  My pediatrician is trying
> phenobarbital (orally) at 1cc right now.  We went to
> get the blood levels checked today.

Alex never had seizures thank goodness - just apneas and hypoglycemic
attacks that looked like epileptic seizures. My youngest daughter however
had/has seizures and the phenobarb levels will be your best indicator.

Just curious about two things though - have they checked Grace's blood sugar
levels when she has the seizures. Low blood sugar levels cause seizures and
a lot of doctors are convinced that all our triers will have seizures and so
dont think to check the basics. Seziures in T-18'ers isnt all that common.
If they are seizures caused by low blood sugars they are easily treated and
Alex hasnt had one since we found out. Mind you it took a lot of advocating
from me to get them to check the sugar thing out.

Secondly - (if they are true seizures) have they given you oxygen to help
manage the longer ones? Or something like diastat to shorten the longer
ones? Thats my greatest fear with seizures, its not the actual seizure
itself but the accompanying apneas from prolonged ones.

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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