Spontaneous remisson

[bianca1216jt]

just curious has anyone had this condition? I looked into different stories regarding this issue and found it is not uncommon for this to occur in infants and young children with mds and monosomy 7 so far my child has all counts normal except hemoglobin only at 9.7 still being pushed for cord blood transplant but his counts are good he is very active and has no signs of anything wrong i was told i should be concerned because the mds will come back that i have false hope and it should not be taking lightly his bone marrow funtion test shows his marrow was producing healthy cells if it was low his marrow has a problem and counts would drop. dont want to make a costly mistake either way

[czaring]

How do you feel about the medical care/advise that you are receiving? I would do everything in my power to gather all the medical opinions that I reasonably could. I would want to make certain that I was dealing with docs that know the most about this situation. This site is extremely valuable and you will find folks here as much or nearly as much “in the know” as many physicians regarding this condition. But I would dovetail the info here with the best possible set of medical opinions that I could gather. Bless your heart! These decisions must feel huge. I’m so happy to hear that your baby is active and showing no visible signs of illness in the meantime.

[bianca1216jt]

Thanks for your response i am recieving treatment at sloan memorial in New York i was told it was the best in the north east region. I was also at synders children hospital but they dont have much expertise in this area and did not feel comfortable having him stay there.Will be looking into John Hopkins and Childrens hospital of PA.Hope all is well with your mother good luck, God Bless

[jaxem]

bianca
I’d love to hear the reasons why one facility is “the best”. Who told you this? I fully agree with czaring to seek as many opinions as possible. Don’t forget about Duke University as they pioneered child transplants. If you’re satisfied with Sloan, seek out Juliet Barker as she is an expert researcher in the field of cord transplants. My personal opinion is to GO for the transplant but pay the most attention to the hematologist who knows the most about your child. Good luck to you.

[jga_socal]

Friends of ours has a son who had MDS really bad from age 9 to 12. Just when they were getting ready to look a stem cell xplant, the MDS diminished and disappeared. Now the son is in his 20’s and doing fine. The suspicion is that puberty somehow ‘fixed’ the problem that caused the MDS.
Maybe big pharma needs to develop a puberty drug for us old ppl? Let’s see, swap MDS for a case of acne? I think so!

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