Re: mosaicism and apraxia (Now GA help)

[Guest guest]

-Actually, he has no issues with the mosaicism. That is when we started looking

further nd found the apraxia (r/t lack of O2 and not the mosaicism); however, I

will say that a lot of mosaic children had lack of O2 issues and now they are

considering research with MDS kids and apraxia.

His main pressing issue is Apraxia and without an MRI, I do not know ifthe lac

of O2 caused other damage.

I must agree with Tara (was it Tara?), neurologists ar wrthless and tell you

nothing; it is difficult toget the tests and information you really need. The

people that can help you cost $$$$ and do not acept your insuranc. (CH has SSI

medicaid.)

Moving on, I am no longer in Cobb and that presents the problem. I am in Toccoa,

GA. (Northern part of GA). No therapsts here have a certificate of need for

Sephens County for pediatric...I already called everyone I could think of.)

If it's to be,then it's up to me.

I do not mean to sound negative, but sometimes one has to face the truth of the

matter.

-- In , " csvillars " <Csvillars@...> wrote:

>

> you might be interested in this article.

>

> http://www.ds-health.com/mosaic.htm

>

>

> Carol

> Trishasmom

> She isn't typical, She's Trisha!

>

>

>

> From: kiddietalk

> Sent: Friday, April 03, 2009 11:23 PM

>

> Subject: [ ] mosaicism and apraxia

>

>

> I thought it would be good to change the subject name so we can find

you more help for your son. Where is Cobb County? Is that Georgia because if it

is I want to refer you to Tanner's EI therapist Zimet who runs Early

Insights now in Georgia and who is wonderful. She has worked with teens and even

adults that I have referred to her -so not just early intervention.

>

> Being your son is 5 I want to see what we can do to help you to secure the

appropriate services he is entitled to - to help bring him up to speed. I

believe your job will be much easier once we find you a " hero " to help advocate

for him.

>

> About the mosaicism -I couldn't find that in the archives- so I really don't

know much about that. Can you share more about how that affects your son?

>

> Below is the one archive I found about mosaic (nothing on mosaicism) but

don't know if the resources that Tricia posted would be helpful to you or not.

Below that are some archives that may help you with advocacy no matter what your

child's diagnosis. Again please let me know if you can what state you are in so

we can see if you can help you find an advocate.

>