Looking for pediatric MDS resources

[amkjud]

Doctors suspect my 7-year-old son has MDS and I'm looking for any type of resources dealing with pediatric MDS. (I have a medical background so resources with technical jargon are ok.) So far it is sparse. Thanks.

[Neil Cuadra]

amkjud,

MDS is already rare, and pediatric MDS makes your son's case even more unusual. One bit of good news is the number of treatment facilities with expertise in MDS in the New York area. I suggest that you contact some or all of these New York treatment centers and those in neighboring states, ask if they've treated pediatric MDS cases, and get to at least one for a second opinion.

If you can't find a pediatric hematologist with MDS expertise then you might do well to have a team of doctors with both a pediatric hematologist and an expert on adult MDS.

The factors that go into decisions about treatment of MDS are likely to be different for kids compared to the typical newly diagnosed MDS patients in their 60s or 70s.

Seniors with high risk MDS are often given anti-angiogenic or demethylating agents, but I suspect that if the diagnosis is confirmed then a transplant from a sibling or an unrelated matched donor would be more heavily considered for your son. Do you have other children? If so, I encourage you to get them HLA tested as potential transplant matches, if the doctors agree.

Seniors with low risk MDS may receive only supportive care with transfusions, especially those of the highest age and with other health problems. With a 7-year-old I would expect doctors to recommend more aggressive measures. After all, he's got his whole life ahead of him.

[amkjud]

Neil Cuadra:

Thank you for your response.

If the diagnosis is confirmed, some of his features make his MDS even rarer than it normally is for pediatrics.

I'm not even sure what MDS expertise means with pediatrics because of its rarity. Is 1 case expertise? 3? 10?

His sibling is not at all a close HLA match. We do have his own cord blood, but one doctor says it can't be used and another says only possibly as a very last resort. But thank God we're not at the point yet that he requires a transplant. Right now just trying to figure out exactly what the problem is and where to go from here.

[Neil Cuadra]

amkjud,

Have you asked the AA&MDSIF for advice or recommendations?

Perhaps you could also get a recommendation from the office of Dr. David Margolis, who is one of the top pediatric hematologists and an expert on aplastic anemia, bone marrow failure, and transplants for children.

[amkjud]

Originally Posted by Neil Cuadra

amkjud,

Have you asked the AA&MDSIF for advice or recommendations?

Perhaps you could also get a recommendation from the office of Dr. David Margolis, who is one of the top pediatric hematologists and an expert on aplastic anemia, bone marrow failure, and transplants for children.

I contacted AA&MDSIF. Very nice, but no specific info on pediatric MDS. Also spoke with Dr. Margolis, a good man. Thanks.