Questions about Geneticist

[Guest guest]

Hi-

We are FINALLY going to a geneticist tomorrow at UAB in B'ham. This will be our

first appt and they said it will be 2 hours long. Can anyone give me any advice

as to what to expect. Will they be doing bloodwork tomorrow or will we have to

go back? Will these people know what MDS is-unlike all of the other Drs I have

dealt with. This has been a very LONG road to this point and I am ready for some

answers. Maybe we will find out one way or the other as to whether he has MDS.

Thanks so much-

Mom to (14 months old)

[Guest guest]

Because it is has been years since I have had that appointment, I will wait to

see if others can reply here and hopefully give you some incite.

I would like to recommend that you go on our website and print out (if you are

able) any information that will be helpful to educate the geneticists there. We

do have the booklet (MDS for the Professional) you can find that here

http://www.imdsa.org/PDF/professionalbrochure.pdf and you can direct them to our

website where they can order their own copy if they wish.

 

Good luck with your appointment and please tell us how it goes!

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: Questions about Geneticist

To: MosaicDS

Date: Monday, December 29, 2008, 10:46 AM

Hi-

We are FINALLY going to a geneticist tomorrow at UAB in B'ham. This will be our

first appt and they said it will be 2 hours long. Can anyone give me any advice

as to what to expect. Will they be doing bloodwork tomorrow or will we have to

go back? Will these people know what MDS is-unlike all of the other Drs I have

dealt with. This has been a very LONG road to this point and I am ready for some

answers. Maybe we will find out one way or the other as to whether he has MDS.

Thanks so much-

Mom to (14 months old)

[Guest guest]

hey ,

I had my geneticist appointment about 6 months ago.  My daughter is 10 months

old and we found out that she has MDS when she was 3 months old.  The geneticist

did not do any blood work she simply just gave us the science break down for how

this happened.  I had a ton of questions that I needed answered and she was very

helpful in answering these questions.  Our geneticist did know more about MDS

than the doctors we came in contact with.  She came in contact with one family

that had a child with MDS.  She met them over 15 years ago and did not know

where they are now. 

If you need any ideas of questions please let me know I would be happy to type

out the questions we asked.  I hope you get all of your questions asked.  I

would him or her for an email address or number for future questions. 

Good luck...

Subject: Questions about Geneticist

To: MosaicDS

Date: Monday, December 29, 2008, 4:46 PM

Hi-

We are FINALLY going to a geneticist tomorrow at UAB in B'ham. This will be our

first appt and they said it will be 2 hours long. Can anyone give me any advice

as to what to expect. Will they be doing bloodwork tomorrow or will we have to

go back? Will these people know what MDS is-unlike all of the other Drs I have

dealt with. This has been a very LONG road to this point and I am ready for some

answers. Maybe we will find out one way or the other as to whether he has MDS.

Thanks so much-

Mom to (14 months old)