The changes in medical field-

May 12, 2005

,

You ask a tough question. I guess the main changes I have seen are

that there is more awareness of RSS and how to treat it. When Max

was diagnosed at 7 or 8 months, we were told he was one of 100 in

the country. We were able to locate 17 and then a few more over the

years, but not much was done or known about treatment. It seemed

like each time Max had a medical problem, the doctors wondered if it

had to do with RSS, but no one could prove it.

Now skip ahead almost 17 years. The reflux, malrotation, other gut

issues, tube feeding benefits, pronated feet and so much more are

now known about and looked for in RSS kids. While we were in touch

with other RSS families, no one else had a child with the same

medical problems that Max had. Now if you look at the kids at the

MAGIC convention, it seems like most have one thing or another that

Max has or does have. It is just amazing to me that we went through

so much alone and now the support, knowledge and treatments are

there.

Max has been one of the first to try many things: Arimidex, growth

hormones, Zoladex, Cisapride, Periactin.... And he has been among

those who have had the " triple procedure " but not one of the first.

He has also had to face learning difficulties and anxiety and

depression. Despite it all, he has turned out to be one

great " kid. "

I still fear for what the future holds for him. Will he be

independent? Will he marry and have a family of his own? High

school is just two years from being over. What then? I don't know

of many RSS people his age who have faced what he has and are now

adults, living independent lives. It's scary. In a way the medical

issues are so much easier to deal with because there is a known

treatment and protocol.

Enough for now. I don't want to lose sight of our joy this

evening. And you just asked how the medical field has changed.

Look at the long post you got in reply!

Jodi Z

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