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


In a message dated 10/31/02 7:19:11 AM, Mikkinbrendan@xxxxxxx writes:

<< A lot of crying then got all stiff 
and turned blue, I would blow in his face and pat his back to get him to 
breathe again.  >>

My now 24 year old daughter did this, also. If I caught her right away, a 
blow in the face would bring her back, but twice we had to do mouth to mouth. 
The doc put her on phenobarb until she was about 7 years old. It was a mixed 
blessing. The episodes mostly stopped, and the few she did have never got as 
bad and did indeed respond to us calling her name or blowing in her face. On 
the other hand, we learned years later that phenobarb could cause or 
exaserbate learning disabilities. Those she still has to deal with. There are 
better meds for siezure activity today and I guess the choice for us was 
which do we choose....breathing or LD's. I think breathing would have still 
been our choice then, even if we had known about the LD's. Her first episodes 
started with hard crying, but later if she even lightly bumped her head it 
was enough to set her off. One time a fever did it. Seems any disruption of 
normal brain activity was enough to set one off. An aside, even after she no 
longer was taking phenobarb, she did have headaches. We always put it to 
stress or a bit of hypochondria. When she was about 19, she started having 
sudden onset migraines that caused her extreme pain. The neurologist put her 
on Inderol as a preventative and guess what? All of her headaches stopped. 
She went off the medication a couple of years ago and has just started 
getting the severe headaches again. He doc has prescribed a medication to 
take as soon as she feels one coming on, but if that doesn't help (she 
doesn't get any warning, just a sudden piercing pain) he will put her back on 
the Inderol. Anyway, it makes me wonder what she might have been feeling when 
she was to young to articulate what was happening.

Nan---Mom to Dom, 19; Tri18 Mosaic, Bipolar Disorder and Ali, 19; Autism, TS, 
ADHD 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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