My baby is diagnose with MDS... HELP...

[juliez]

my 5 old month son was diagnose with MDS... from what the doctors are telling me is that it is very rare in children, but it still happens...

however his case becomes more rare.. usually in mds the chromosomes that are affected are 5,7,8 but in my son it is chromosome number 18...

i live in new york and i need a second opinion.. however there are not that many specialist in pediatrics mds...

can someone recommend me a specialist????

[Chirley]

I'm so sorry you and your baby are going through this. It's bad enough when it's for an adult to be able to deal with this disease.

I live in Australia so I won't be any use to you but I Googles pediatric MDS and got a site for Boston Children's Hospital where they claim to specialize in pediatric MDS.

I don't know if they are as good as they say, you cant trust self promotion but maybe someone else here has some more information for you.

Best of luck.

Regards

[juliez]

thank you...

[Hopeful]

Akiko Shimamura is an excellent pediatric hematologist. She was with Boston but now is at Fred Hutchinson/Seattle Children's. You may be able to contact her through the email on this website:

http://labs.fhcrc.org/shimamura/index.html

She has been responsive to emails in the past, as she is very passionate about her field. I'd recommend contacting her for recommendations on doctors at the Children's Hospital Boston as well as for some direction on your son's presentation.

[Sally C]

Dear Julie,
I can't even imagine your concern and heartbreak.
If you have read any of my previous posts I am a great advocate of The National Institutes of Health in Bethesda, Md. They have a huge, beautiful stone building just for the kids who are patients and their familes right on the NIH campus. They are on the cutting edge of blood diseases. The man who is considered the #1 hematologist in the world - Dr. Neal Young - is over the hematology dept. although I don't know if his specific dept. handles children with MDS - but I consider them the best in the world. My husband is an MDS patient of theirs and has been since 4/09. I truly believe they saved his ife.
Also, any care you receive there is free as they do clinical trials for the FDA. And you will never find more accessible doctors anywhere.
My best wishes and prayers for your baby and family.
God Bless,
Sally

[ToryNick]

Julie,

I know the pain that you are going through because my 2 year old son was also diagnosed with MDS in January. I live in Florida but our son's hematologist has been in contact with the pediatric hematology department at the Boston Children's Hospital. They have a physician in their department that specializes in children with MDS. While the only cure is a bone marrow transplant there are ways to treat the symptoms and help your baby feel a lot better.

The most important thing to find out is if your baby's MDS is low, intermediate or high-risk MDS as it will give you an idea of your son's prognosis and how best to treat the disease.

If you have any other questions feel free to send me a message or an email. My prayers are with you and I hope for the best for you and your son.