[tri-med] Re: 5 month old Trisomy 13 baby

----- Original Message -----
From: "Mark and Jayne Wright"
>>He's now on Lamictal and Topamax.  We had trouble with the Depakene and I
know some other families that have too.  It messed up his blood cell count.
He was also on Phenobarbital, Dilantin (which made him change his
personality) and Klonopin.

Phenobarb in even teeny doses made Alex into a child that I didn't like. He
is currently on Gabitril, not for seizures even though its a seizure med.
Personality wise its great but a little more sedating than Vigabatrin was.
My daughter was on Epilim but that caused massive weight gain and the shakes
besides doing nothing for the seizures. Tegretol was what worked best for
her......

The ped is talking about adding Ritalin to his regime in order to try and
stimulate his nervous system. My personal thoughts are still very divided on
this one - does anyone else have any thoughts?? He doesn't have ADDHD but
certainly has decreased concentration these days so maybe symptoms of ADD
but due to the brain stem deterioration. He's too old for caffeine or
theophyline so the ped wants to try either Ritalin or dexamphetamines and
see what happens.......

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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