[nbullock11]

Hi amkjud,

My son is the 2 year old that was just diagnosed with MDS on 11-4. We just met with our hematologist and I ask about WHO classification as well. I wanted to know what Noah was and the severity of his MDS. I was told that they have a difficult time with the pediatric cases. They usually don't fit into the adult classification system. Most of the kids are put in the refractory cytopenia (RC) of childhood classification.

Here is what happened with Noah and his bone marrow results. His MDS developed over the past 1 ½ years. The last 3 months it shows to be rapidity progressing. Noah has had 3 of them. His first one was 7/10 and for the most part it was normal except for some decrease cellularity. He was at 70%. This is when he was first diagnosed with neutropenia.

A year later 7/11, he had his 2nd one. His cellularity dropped down to 60% with a present of lymphocytosis and dysplastic changes in the myeloid series. There was a population of lymphocytes and paucity of myeloid and erthroid precursors. We were told that it could be a progression to MDS or AA.

His 3rd was on 11-1-11, his marrow was at 50% cellularity. They found trilineages hemotopoietic maturation with numerous lmphoctyes and 4% myeloblast. Dylasisa was present in myloid and erthroid lineages. Also his fetal hemoglobin had elevated to 9.1%. That is when he got the confirmed diagnosis of MSD.

What I was told about the FISH panel is if a chromosomal abnormality shows up then it helps the dr’s confirm the diagnosis sooner. Noah’s FISH panel on all 3 of his biopsies have been negative.

I’m not sure if this information was helpful. We are in the same boat as you. There is very little information on pediatric MDS. I called the MDS Foundation. They recommended a doctor in Florida at All Children’s Hospital, Dr. Gregory A. Hale. He is supposed to be an expert in the pediatric MDS field.

Good luck to you and your family, I hope you get all the information you need to make the best treatment choice for your son. Just know there is at least one other parent out there that is in the same boat as you. I know how overwhelming and frustrating it is …