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

I'm not real familiar with all the different meds. but they started him out on 
prelone for infantile spasms but it was upseting his stomach real bad.  So they 
started him on Zonagram, which they say is fairly new.  First he was on 50mgs a 
day and that didn't take the spasms away so they just put him on 100mgs a day.  
It has been about 4 days and I am still seeing the spasms.  And of course the 
other spells that he has.  They are usually brought on by crying or when his 
formula comes back up.  He has been doing so well and responding so well to us 
(smiling and cooing) I just want the doctors to get down to the bottom of this.
Thanks for your advice
Nancy
 Mark and Jayne Wright <jm.wright@xxxxxxxxxxx> wrote:{...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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