[tri-med] Re: GHT

Karen,
As always, thank you for the well thought out and informative response.

>>there is a gene on the 18th chromosome (among others), specifically the lower 
>>end of the q arm, 
I haven't been able to find anything on what the genes on chromosome 18 are 
responsible for.  Could you provide me with more information or a place to get 
the information?  Sierra's duplication does involve the end of the q arm.  She 
doesn't have a deletion.  

Sierra will be three in February and weighs 23 pounds.  She has been holding 
steady at this weight for at least 6 months now.  Her doc doesn't monitor her 
weight.  I guess it is good that she understands that Sierra is going to be 
small, but I wonder if she is getting to lax in this area.  I am wanting to go 
see a nutritionist, she has never been.

>>he wrote before the test to the ped that I was neurotic but he would test to 
>>shut me up :-)) (and yes he used those words)

This is an awful thing to say, but doctors never amaze me by their rudeness!  
Good for you for sticking to your guns.  You know the saying, mother knows best.

>>Parents say and believe that it also increases muscle mass, improves tone, 
>>improves cognition and so on. 

These are actually the points that I was interested in.  I know Sierra will 
never be a "normal" size and I am ok with that.  She has very poor muscle tone 
and I am not sure of her cognitive level.  I know that one thing is not a cure 
all, but every little bit counts.

I can see how the side effects are enough to make you think a couple times 
about starting GHT.  

Thank you again!
Nicole mom to Alyssa 4 (going on 21, keeping me busy, and keeping my hair from 
getting to long because I'm pulling it out), Sierra 2.9 years (partial trisomy 
18 q, my brightest ray of sunshine on a gloomy day), Kobey 1 (true mama's boy 
through and through, climbing, pinching, and loving), and Joe my wonderful 
husband of 8 yrs. (without his support I would be in the funny farm by now!)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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