Re: MDS health issues

[Guest guest]

Hi Celeste

heart conditions are a concern, but they are congenital, so they are born with a

heart condition or they aren't. They don't get a heart condition later. But, if

her heart has not been checked, then it needs to be done, because as Darlene

here can tell you, sometimes heart conditions can be left unnoticed for years if

they aren't checked properly.

The other thing that needs to be checked is the thyroid. This is done by an

annual blood test and if it is underactive then they would give your daughter

meds to keep it level. (my son had this problem for half his childhood before it

was found out and treated)

Digestion problems can sometimes be present, but if you are not having problems

with constipation then I wouldn't worry about it.

Your doctor should be following the Health Care guidelines for Down syndrome

because your daughter has a percentage of cells with the extra 21st chromosome

so it is possible for her to have medical problems associated with Ds. This does

not mean she WILL get these problems. It just means that it is possible, so

these health care guidelines will help keep her healthy. If you would like to

view this guidelines we do have them posted on our site with other information

that you may find helpful as well. Just go to

http://www.imdsa.org/Information/infopack.htm

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

http://www.mosaicmoments.today.com

Subject: MDS health issues

To: MosaicDS

Date: Thursday, August 20, 2009, 9:58 AM

 

Hi there...along the lines of health issues, it seems like

heart issues are a concern with MDS also, right? I have read a few things about

digestive problems but what else is a concern? Ava sees an audiologist

regularly for her hearing loss and the geneticist wants her heart checked. I am

just wondering what else would be a concern. From the time Ava was born, she

had acid reflux but out grew that by the time she was 18 months (thank

goodness!!).

Thanks!!

Celeste (mom to a 7, Dylan 4 and Ava 2)

[Guest guest]

Well we finally went to see a genticist and I do find it a waste of my $40.oo

copay(lol). I really didn't get any more info than I already new. They only

tested 23 cells and she told me there really is no reason to test anymore,

because each child is different and reguardless if they have mds or ds is varies

so different in each individual. I explained to them these were so sure he had

mds instead of ds at birth because he only had a few features of ds9???).

The the cells they tested came of all t21 but he most likey is at least 75% ds

in his cells. So she said he's progressing very well so far(but what can you

really tell at 6 months). Also he is babbling alot and saying da da. Is this a

good sign. He is starting to sit up alittle by himself , although he does have

some muscle weekness. Anyway such is life He does need heart surgery I

found out my the pediatric cardo. But he has a very small hole in is upper left

chamber and he dr said it's a very easy procedure the kind that heart surgeon's

love to do?????????

>

> Hi there...along the lines of health issues, it seems like heart issues are a

concern with MDS also, right? I have read a few things about digestive problems

but what else is a concern? Ava sees an audiologist regularly for her hearing

loss and the geneticist wants her heart checked. I am just wondering what else

would be a concern. From the time Ava was born, she had acid reflux but out

grew that by the time she was 18 months (thank goodness!!).

> Thanks!!

> Celeste (mom to a 7, Dylan 4 and Ava 2)

>

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