22mnth old son with MDS

[sharon2kids]

My son is 22mnths old and has been diagnosed with MDS only 3 weeks ago after a year of being extremely ill all the time. He has a neutrophil count of 0.3 and his lowest hemoglobin was 3.1 which with the help of a transfusion rose to 9.1 two weeks ago but I do think that is coming to an end as he has suddenly got very pale again. His platelets are 111, we have been dropped into a medical world that we know absoultely nothing about and all these counts are confusing. I have been reading alot about ‘blasts’ which is totally confusing as his doctors have not mention anything about this. Dad and I are waiting for results from a tissue match which is dragging out. What is the outlook for my son?, does a bmt cure him? just to get information from other people would be a blessing, finding another parent of a child with MDS has almost become impossible. The future for us is now very unsure and extremely scary.

[lindajo]

A BMT would be a chance at a cure. A stem cell transplant may also be an opportunity.

It is rare to get a diagnosis of MDS for one who is so young. Absolutely get a second opinion.

Blood counts for children have different normal ranges than for adults. Get a copy of all tests so as you read you can refer to the test results. It will help clarify so much in your mind.

Since you are in London, counts you see on the website in U.S. may be listed slightly differently. Go to links on the home page and click on Aplastic Anemia Myleoydysplastic International Foundation. They are based in Maryland. They will send you information that is easy to read and understand. They are an excellent resource. They also have booklets about understanding blood counts that will help.

The links on both sites will also give you information about resources that are available for those who need help. We will keep you in our prayers. Lindajo

[jaxem]

sharon
the younger the patient is with this dreaded disease, the better the chance of cure. has he had a bone marrow biopsy(bmb)? that’s the only way to tell about the blasts, or amount of defective cells in the marrow. these cells grow but doe off before reaching maturity thus squeezing off the function of good cells. a bmt is the only cure. do you have other children that can be tested for compatibility? I understand what you are going through and your fears, especially with a child. get back to us & I pray everything turns out well.

[marlene]

They need to rule out genetic blood disorders like Black Diamond anemia and Fanconi’s Anemia also. Make sure they have done this.

Marlene

[sharon2kids]

Yes he has had a bone marrow biopsy and this is how we got the diagnosis. He is under the best children’s hospital in England ‘Great Ormond Street’as previously with our local hospital they were just saying he was just anemic which I have never agreed with so ended up in private health care and to our distress MDS is what they have come back with. I am going to phone his nurse up tommorow and ask about the blasts as they have only said MDS and his bone marrow is making very abnormal cells
Our six year old is also going to be tested, thankyou all so much for your thoughts

[jmt]

Sharon i also have a child with mds at 16 months was dx. Platlet count was 29,000 started induction chemo 4/08 and got blasts down from 10% to 0% also had monosomy 7 in your case you did not mention thats a ++.My son took the chemo real well and was released 7/2008 next step was a cord blood transplant my wife and i refused to put him through a harsh treatment hoped and prayed it did not come back but it did indeed come back 12/2008 our world crashed down would have to do induction all over again then transplant his platlets dropped from 260,000 to 50,000 over this period and now has a 9% blast count he had caught a virus last week from my daughter and was not allowed to be admitted to hospital with all those other children with weak immune systems i dont blame them i would want the same. now the problem is his body fought of the virus itself and platlets are back up to 160,000 and anc 4.0 waiting for answer from doctors on why his platlet count and anc count recoverd on there own after the virus.my advice to you is to always get a 2 ,3 and even 4th opinon this can be cured 65-70% success rate the younger the better as member stated above ther will be many side effects to the transplant but its the only choice good luck in what ever choice you make please feel free to contact me as my son is now same as your child .

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