MDS in kids

[amkjud]

I hope it's ok that I'm reposting this here. (I originally posted in the pediatric section, but there doesn't seem to be a lot of acitivity there.) Doctors think my 7-year-old son might have MDS.

1) I'm having trouble finding resources dealing with pediatric MDS. Any suggestions? (I have a medical background, so resources with technical jargon are probably fine.)

2) Are there any doctors in the New York area that specialize in pediatric MDS?

Thanks!

[disneydad]

As far as i know, She does not specialize in Pediatrics, but i highly reccomend Dr. Azra raza at columbia for all things MDS. It is her passion. She has a deeper understanding than anyone else that i have met, while caring for my Mom.

[amkjud]

DisneyDad:

Thanks for responding!
I've seen her name. When googling MDS, her name is one of the first hits.

[disneydad]

Also, the textbook, "Hematology Basic Principles and Practice" has a chapter on MDS in children Written by David Loeb and indy Schwartz from Johns Hopkins. It might be worth the trip down the Jersey Turnpike to check them out.

[amkjud]

Disney Dad:

Thanks for that reference. I will definately check it out.
I just saw the thread about your mom. I pray for the best for her.

[akita]

This scientific article compars the IPSS criteria for adults and children.

http://www.nature.com/leu/journal/v1.../2403489a.html
The International Prognostic Scoring System (IPSS) for childhood myelodysplastic syndrome (MDS) and juvenile myelomonocytic leukemia (JMML)

Citation: "In conclusion, the IPSS is of limited value in both pediatric MDS and JMML. The results reflect the differences between myelodysplastic and myeloproliferative diseases in children and adults."

Childhood MDS seems to be something special.

Kind regards, Margarete

[disneydad]

Originally Posted by amkjud

Disney Dad:

Thanks for that reference. I will definately check it out.
I just saw the thread about your mom. I pray for the best for her.

Thanks. You and your son will be in my prayers.

[nbullock11]

My 2 year old son was diagnosed with MDS on 11-4-11 after a 1 1/2 of being treated for neutropenia. The doctors are recommending a bone marrow transplant in 3 to 6 months. Most of the information that I've seen regarding MDS is for adult.

According to my research MDS is extremely rare in children only about 100 kids are diagnosed with it a year. I would like to know if there are any other parents who has a child with MDS. Any feedback or suggestion on treatment options/ facilities would be greatly appreciated.

We are currently being treated at Phoenix Children Hospital. I want to get the best treatment for my son.

Thanks

[amkjud]

I've also seen the 100/year number, as well as 4 per million.
I assume you saw the beginning of this thread, but my son is 7 years old. suspected MDS, whatever that means. he is being monitored and is not a candidate yet for transplant.
I don't know yet much about facilities where I live in New York (looking into it now), much less Phoenix. Sorry.
A number of other people have linked to some pertinent info on MDS in kids over the last 2 days for me.
Please report back here any info you find out.
Good luck.

[amkjud]

Margarete:

thank you for that link

[akita]

Please read also this thread about proposed innovatons of the IPRS.
http://forums.marrowforums.org/showthread.php?t=2503

And - this is not scientific, but helped many families with sick children: CaringBridges, also on Facebook, where you can create free Blogs for your child and contact other families.

Kind regards!

Margarete

[amkjud]

Originally Posted by disneydad

Also, the textbook, "Hematology Basic Principles and Practice" has a chapter on MDS in children Written by David Loeb and indy Schwartz from Johns Hopkins. It might be worth the trip down the Jersey Turnpike to check them out.

Thanks. I got it. They authored the chapter in an earlier edition. As far as I can tell in the most recent edition (2009) there is a new chapter by different authors.

I was also referred to a review article on pediatric MDS in British Journal of Haematology 140 (2008), pp. 610-624.