[tri-med] Re: Anyone have any insight or advice???

----- Original Message -----
From: <oneTUFFcookie23@xxxxxxxxx>
> Hayden was on Prednisone for alot of chronic respiratory problems. I
> know that had alot to do with his growth because he just out of nowhere
> started getting big.

Could it just have been the fact that he was getting adequate oxygen? Alex
started growing the same time he was put on C-PAP. Before then he was
working so hard just to breathe that he was barely gaining anything in the
growth and development department. Once the obstructive component of his
breathing was identified (he breathed on his own - he just spent so much
time and energy doing it) and treated it let him do all the other things he
should have like growing. Plotting the change on his growth chart you cant
ignore the jump once the obstructive apneas were treated and he got the
gastrostomy.
I will never underestimate the importance of oxygen and enough of it!!!
(everyone on the list gets sick of me telling them to check for obstructive
apneas)

> Hayden does have micropenis. I wouldnt say he is the smallest but then
> he aint the biggest either..lol. His general size is about the smaller
> side of average with his height being about an inch or 2 shorter than
> the smaller average.

He sounds like he is doing OK sweet!!!!
Alex tracked below the third centile until he started growing (as above) and
his penile size is on the small side of average but definitely OK. My
friends son on the other hand who does have charge syndrome and who has done
the testosterone injections is pleased with his growth - he is now at age 6
at least as thick as a match stick (you can see why I said they do it for
function not appearance). Which is a lot bigger than it was. Makes me
grateful for the problems I have..........

Alex doesn't have CHARGE - it is a genetic syndrome but they dont at this
stage know what chromosome or genes cause it. But as Alex's ped
affectionately terms it Alex has the CHARGE phenotype - meaning he has a lot
of the "symptoms" and problems of CHARGE - its just that there is another
cause. I still lurk on the charge list and value my friends from Chargeland
:-)) I learn a lot from them and have a special friend in the US whose son
has Charge and also Shapiro's like Alex...

Love comforteth like sunshine after rain.
-William Shakespeare

Keep Looking for Rainbows!!!
Karen, Mum to Alex (6, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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