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

{...Hi, my name is Nancy, I have a 5 month old baby boy with Trisomy 13.  I
need some advice if anyone has any.  He will be really mad for some reason
or another and then he will become very rigid and turn blue and his
breathing becomes very shallow.  And he will come in and out of it for about
5 min.  At first I thought he was holding his breath because he was so mad.
Then we thought it might be Pulmonary Hypertension.  Now I am thinking it
might be some form of seizure.  As he comes out of it he seems to loose
control of his bowels.  Has anyone experienced anything like this??}

Nicholas started having grand mal seizures at about 1 1/2 yrs old.  He would 
make a strange noise and then pull his arms and legs in tight to his body and 
then stop breathing and turn blue.  He would also have a bowel movement.  We've 
been through 6 seizure meds.  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.

Jayne - mom to Nicholas - T-13 - 7 yrs old
Hudson IL 



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