Re: NEW-- 2 mo. old with MDS & Transient Myleoproliferative disease

[Guest guest]

Dawn -

Congratulations on your new baby! What is her name? I have no

information on Transient Myleoproliferative disease but we have lots of

experience with MDS here - Your daughter will live up (or down) to

whatever expectations you set for her - She will be able to do anything

(maybe with a little more work and effort) she wants to do. Just give

her lots of love!

Darlene - Mom to (7) and (5)

" Those who say it can't be done are usually interrupted by those doing

it. The human spirit can overcome ANY obstacle in the way of a dream. "

NEW-- 2 mo. old with MDS & Transient Myleoproliferative

disease

My 2 mo. baby girl was just diagnosed with MDS.They did skin biopsy

on her arm out of 50 cells--6 tested tri.21. She has no outer

features at all. She is on target right now.When she was born we

almost lost her ... Her blood count got up to 280,000,she had 2 blood

transfusions and stayed in the nicu for 3 weeks. We are better now

wbc is 10,000. We have to follow up with St. Jude once a month for

the blood disorder.She is trully a miracle and has blessed our lives

so much. I also have 2 boys 13 yrs. 9 yrs. & step-daughter 13yrs.I

tried for 7 yrs. before getting preg. this time.I am thankful for

this website and ANY input or info would be great.God bless,Dawn

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

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[Guest guest]

Welcome!! Enjoy that beautiful little princess. She sounds like she will have

plenty of protection from the big brothers.

Irene mom to Nat 10 MDS, Luke 8, Emilia 5, Lillian 3, and Isaac 6mo

jenna51304 wrote:

My 2 mo. baby girl was just diagnosed with MDS.They did skin biopsy

on her arm out of 50 cells--6 tested tri.21. She has no outer

features at all. She is on target right now.When she was born we

almost lost her ... Her blood count got up to 280,000,she had 2 blood

transfusions and stayed in the nicu for 3 weeks. We are better now

wbc is 10,000. We have to follow up with St. Jude once a month for

the blood disorder.She is trully a miracle and has blessed our lives

so much. I also have 2 boys 13 yrs. 9 yrs. & step-daughter 13yrs.I

tried for 7 yrs. before getting preg. this time.I am thankful for

this website and ANY input or info would be great.God bless,Dawn

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Jenna,

Welcome! My baby will be 2 months old Sunday. She was also in the NICU

for 18 days because she was premature. This forum is great. Everyone is so

helpful. I have had lots of replies to questions and even phone calls from

people when I needed them.

My baby was diagnosed at 4 days old. And we too had problems getting

pregnant. In fact, we are truly blessed because Emma was never supposed

to happen or at least that my dr. said.

Welcome! Sorry I rambled so much! :-)

Lynnelle-Mom to Emma (2 months old)

> My 2 mo. baby girl was just diagnosed with MDS.They did skin biopsy

> on her arm out of 50 cells--6 tested tri.21. She has no outer

> features at all. She is on target right now.When she was born we

> almost lost her ... Her blood count got up to 280,000,she had 2 blood

> transfusions and stayed in the nicu for 3 weeks. We are better now

> wbc is 10,000. We have to follow up with St. Jude once a month for

> the blood disorder.She is trully a miracle and has blessed our lives

> so much. I also have 2 boys 13 yrs. 9 yrs. & step-daughter 13yrs.I

> tried for 7 yrs. before getting preg. this time.I am thankful for

> this website and ANY input or info would be great.God bless,Dawn

[Guest guest]

Dear Dawn,

Welcome to our family! I am so glad that you found us! Here you can ask any

question concerning MDS and if we don't know the answer we will do our best to

find it! What is your daughter's name? What area do you live in? We try our best

to find families in your area who can offer you support, information, and

friendship!

Please explain Transient Myleoproliferative disease to me. I am not familiar

with this and am very interested in knowing all about it!

Once again, welcome to our family!

Sincerely,

Kristy Colvin

IMDSA President

The Only Handicap a Person Has are the People around Them!

http://www.imdsa.com

jenna51304 wrote:

My 2 mo. baby girl was just diagnosed with MDS.They did skin biopsy

on her arm out of 50 cells--6 tested tri.21. She has no outer

features at all. She is on target right now.When she was born we

almost lost her ... Her blood count got up to 280,000,she had 2 blood

transfusions and stayed in the nicu for 3 weeks. We are better now

wbc is 10,000. We have to follow up with St. Jude once a month for

the blood disorder.She is trully a miracle and has blessed our lives

so much. I also have 2 boys 13 yrs. 9 yrs. & step-daughter 13yrs.I

tried for 7 yrs. before getting preg. this time.I am thankful for

this website and ANY input or info would be great.God bless,Dawn

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************

[Guest guest]

Tina--Thank you for explaining this!! My son Caden had TMD at 16 days--and the

doctors never explained it to me this way--I suppose they felt that I was an

information over load and they put it into simple terms--he has leukemia cells,

they should go away without treatment, but he needs to be tested every so often.

They probably thought that was all I needed to know. Do you know what the

chances are of it turning into to cancer? My doctor said minimal, but others

have said there is a high risk.

Thanks again!

mom--to Caden (15 mos-MDS)

Re: NEW-- 2 mo. old with MDS & Transient Myleoproliferative

disease

Dawn-

Welcome to the group. I'm sure your daughter is just a joy. What a

pity that she's had to go through so much already in her short life

with the time in the NICU and the blood transfusions.

I see that people have questions about Transient Myeloproliferative

Disorder (TMD). I am a pediatric nurse practitioner in pediatric

oncology (children with cancer) at Stanford so we follow babies such

as yours. I'm sure the information below is no news to you since you

are getting follow-up at St. Jude (a marvelous hospital). However,

others are inquiring about the disorder.

TMD occurs in children with Down syndrome (or mosaicism) at birth as

seen by a high white blood cell count, anemia (low hemoglobin), low

platelets (that help stop bleeding) and abnormal cells-similar to

leukemia cells in the blood and bone marrow (and sometimes other

places such as the liver or spleen). Luckily this disorder goes away

on it's own without any treatment for about 80% of the babies. A few

babies need some low doses of chemotherapy. The kids then need to be

followed up to make sure that it doesn't come back or turn into

leukemia. The doctors have a hard time distinguishing the cells

under the microscope from leukemia cells, but if this happens in a

young baby with Down syndrome or mosaicism they just try to wait it

out-and it usually just goes away.

If you need more specific questions answered, I'd be glad to respond

off-line at: Baggott@....

Our daughter with MDS is now 28 months old. She is doing very well.

She also has no physical stigmata (diagnosed because my amnio showed

another mosaicism-trisomy 13 mosaicism-but the trisomy 21 mosaicism

showed up in her blood work at birth). She knows her shapes and

colors, can count to 10, say the alphabet (except W) and do many

other things. Charlotte does have a speech delay-but she is saying

some words-she's just difficult to understand and isn't putting 2

words together yet. She knows over 100 signs-and I highly recommend

starting to teach signs at about 7 or 8 months of age (we love our

signing DVDs from www.signingtime.com). The signing really decreases

frustration on everyone's part as we can understand her.

I'd also push for speech therapy from the Early Intervention Program

in your state early on (unless of course she is ahead of kids her

age).

Enjoy your baby and the other kids...

Tina Baggott (mom to Charlotte 3/8/02 and Will and Amy (5/14/03)

> My 2 mo. baby girl was just diagnosed with MDS.They did skin biopsy

> on her arm out of 50 cells--6 tested tri.21. She has no outer

> features at all. She is on target right now.When she was born we

> almost lost her ... Her blood count got up to 280,000,she had 2

blood

> transfusions and stayed in the nicu for 3 weeks. We are better now

> wbc is 10,000. We have to follow up with St. Jude once a month for

> the blood disorder.She is trully a miracle and has blessed our

lives

> so much. I also have 2 boys 13 yrs. 9 yrs. & step-daughter 13yrs.I

> tried for 7 yrs. before getting preg. this time.I am thankful for

> this website and ANY input or info would be great.God bless,Dawn

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

*************************************************

Become a member of IMDSA at http://www.imdsa.com

*************************************************

MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

*************************************************