Re: Welcome Rajesh Pruthi!

[Guest guest]

Welcome Rajesh and family. I am Donna Spudic - membership chairperson and

grandmother to Adam 5 with mds. I am glad to have you in our group. Tell us

all about your daughter.

Donna - gram to Adam 5 mds, Skylar 5 and Mia 16 months

Kristy Colvin wrote:

Hi Everyone

We have another new family joining us today. Here is what Rajesh had to say...

RAJESH PRUTHI FATHER OF SURBHI 11 DS - BUT I DONT KNOW - IS SHE - MOSIAC DOWN

SYNDROME ? HOW TO CHECK

Welcome to our family Rajesh! I am so glad you have joined us. Please tell

everyone all about Surbhi! To answer your question...mosaic Down syndrome

happens when a percentage of cells have the extra 21st chromosome found in Down

syndrome and the remaining cells are unaffected. Often times, a person who is

diagnosed with Down syndrome actually has MDS and does not know it. This is

mainly because when the doctor does the test for Down syndrome, he/she does not

test enough cells to locate the unaffected cells. IMDSA recommends that 100

cells are tested in order to find the mosaicism. Often times, (but not always) a

person with MDS does not have all the strong physical characteristics found in

Down syndrome. Most meet their developmental milestones a few months faster than

expected for a person with Down syndrome. However, most babies with MDS have a

more significant speech delay than those with Ds. (with speech therapy this can

often be overcome) Many individuals with MDS do

not require the same level of special education as one with Ds. Because of the

varying percentages and where those percentages are located in the body, it is

difficult to know what areas will be affected for the individual, so most always

it is a wait and see kind of thing.

I hope this helps you better understand MDS and how it can be found. If you have

more questions please feel free to ask!

Welcome!

Kristy Colvin

IMDSA President

____________________________________________________

International Mosaic Down Syndrome Association

PH: 1-

Toll Free: 1-888-MDS-LINK

www.imdsa.com

[Guest guest]

Kristy,

Do you have a book reference for the speech delays being worse in

those with MDS. It seems I have seen this before and I wanted to

research why (underlying reasons perhaps not looked at or perhaps

something I have not seen as of yet). <<< I wonder if it has to do

with the creative side of the brain working overtime?

>

> Hi Everyone

> We have another new family joining us today. Here is what Rajesh

had to say...

>

> RAJESH PRUTHI FATHER OF SURBHI 11 DS - BUT I DONT KNOW - IS SHE -

MOSIAC DOWN SYNDROME ? HOW TO CHECK

>

> Welcome to our family Rajesh! I am so glad you have joined us.

Please tell everyone all about Surbhi! To answer your

question...mosaic Down syndrome happens when a percentage of cells

have the extra 21st chromosome found in Down syndrome and the

remaining cells are unaffected. Often times, a person who is

diagnosed with Down syndrome actually has MDS and does not know it.

This is mainly because when the doctor does the test for Down

syndrome, he/she does not test enough cells to locate the unaffected

cells. IMDSA recommends that 100 cells are tested in order to find

the mosaicism. Often times, (but not always) a person with MDS does

not have all the strong physical characteristics found in Down

syndrome. Most meet their developmental milestones a few months

faster than expected for a person with Down syndrome. However, most

babies with MDS have a more significant speech delay than those with

Ds. (with speech therapy this can often be overcome) Many

individuals with MDS do

> not require the same level of special education as one with Ds.

Because of the varying percentages and where those percentages are

located in the body, it is difficult to know what areas will be

affected for the individual, so most always it is a wait and see

kind of thing.

>

> I hope this helps you better understand MDS and how it can be

found. If you have more questions please feel free to ask!

>

> Welcome!

>

>

> Kristy Colvin

> IMDSA President

> ____________________________________________________

> International Mosaic Down Syndrome Association

> PH: 1-

> Toll Free: 1-888-MDS-LINK

> www.imdsa.com

>

>

>

[Guest guest]

Dear Rajesh ,

I personally greet u for joining IMDSA , as mentioned by Kristy weather

SURBHI is MDS

,not know ,you can have this Test/Check at PGI Chandigarh ,except this no

where

else this test is available in Haryana/Punjab . I too got JASJEET MDS

diagnosed at PGI Chandigarh.

Amarjit.

Father of JASJEET.MDS22

On Tue, Mar 18, 2008 at 10:48 PM, Kristy Colvin

wrote:

> Hi Everyone

> We have another new family joining us today. Here is what Rajesh had to

> say...

>

> RAJESH PRUTHI FATHER OF SURBHI 11 DS - BUT I DONT KNOW - IS SHE - MOSIAC

> DOWN SYNDROME ? HOW TO CHECK

>

> Welcome to our family Rajesh! I am so glad you have joined us. Please tell

> everyone all about Surbhi! To answer your question...mosaic Down syndrome

> happens when a percentage of cells have the extra 21st chromosome found in

> Down syndrome and the remaining cells are unaffected. Often times, a person

> who is diagnosed with Down syndrome actually has MDS and does not know it.

> This is mainly because when the doctor does the test for Down syndrome,

> he/she does not test enough cells to locate the unaffected cells. IMDSA

> recommends that 100 cells are tested in order to find the mosaicism. Often

> times, (but not always) a person with MDS does not have all the strong

> physical characteristics found in Down syndrome. Most meet their

> developmental milestones a few months faster than expected for a person with

> Down syndrome. However, most babies with MDS have a more significant speech

> delay than those with Ds. (with speech therapy this can often be overcome)

> Many individuals with MDS do

> not require the same level of special education as one with Ds. Because of

> the varying percentages and where those percentages are located in the body,

> it is difficult to know what areas will be affected for the individual, so

> most always it is a wait and see kind of thing.

>

> I hope this helps you better understand MDS and how it can be found. If

> you have more questions please feel free to ask!

>

> Welcome!

>

> Kristy Colvin

> IMDSA President

> ____________________________________________________

> International Mosaic Down Syndrome Association

> PH: 1-

> Toll Free: 1-888-MDS-LINK

> www.imdsa.com

>

>