special kids & drugs

[Guest guest]

Another group I am in (for parents of kids with chromosome

abnormalities) started this discussion on Phenobarb (because one

child had an extremely unusual reaction to it). One parent raised

some very interesting points, and excerpts of her post follow. I

know that RSS and/or SGA kids do not technically have a chromosome

abnormality (as far as we know at this time), but I believe that

this parent made a valid point - don't be paranoid, but always be

perceptive.

in Alaska

(mom of Charissa, age 21 and *not* RSS, but had all the issues, plus

some)

-posted from a chromosome group: " Maybe I ought to mention here that

I'm a licensed medication/treatment nurse, and HAVE dispensed my

fair share of it (and assorted other drugs) that I wouldn't want to

see my own child on.

Here's the thing that keeps jumping out at me with my experiences

over the year with my own child, my personal local friends rare

chromosome children, and numerous other ones I've met through

assorted on-line support groups. They just DON'T tend to respond to

standard medications in the " normal' way. And why should we expect

them to? They AREN'T 'normal " !

Phenobarb just happens to be the drug that I've seen the most (and

most disasterous too) results from. But there are other standard

drugs that I can give you horror stories on, when given to a

chromosome compromised child..... What other standard drugs are out

there lurking, just waiting to bite us? I don't know, and I'm not

in a hurry to find out either! "