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Old Wed Mar 3, 2010, 11:44 PM
BeautyForAshes BeautyForAshes is offline
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Join Date: Mar 2010
Location: Orange, California, USA
Posts: 2
Orange County, California

Hi,
My name is Alida. My little then 2 year old (now 3) was hospitalized in May of 09 with pancytopenia, possibly Leukemia. That was rule out. Many doctor visits, labs, transfusions later we have finally been given the official diagnosis, Aplastic Anemia. I research the heck out of just about everything. Try as I might, I 've had VERY little luck in the of finding support groups for those raising children with the disease in my area. Oddly enough, my doctor mentioned that it is very common to see this disease and that he deals with it often. I find that hard to believe as they aren't specialists in the field or anything and I they don't have ay sory of support group... I would love to chat with parents dealing with this disease. This can be a bit overwhelming but I trust that there is a purpose for all of it. Thank you, Bless you, Alida5
http://ransomedredeemed.blogspot.com/
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Alida-Mom to Josiah Valor age 3, diagnosed MAA Jan 2010, transfusions only so far. Looking for alternative natural therapies. Hesitant to do BMT.
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Old Sun Mar 7, 2010, 12:50 AM
Stephanie Stephanie is offline
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Join Date: Aug 2009
Location: Arizona, USA
Posts: 6
hello

Alida,
I am amazed at how similar our stories are! My son's journey also began in May of 09 with possible Leukemia- then AA and now MDS. Has your son undergone a Bone Marrow Biopsy? It took 5 for us until his doctor was satisfied, before the FISH test he was borderline Aplastic Anemia or MDS. It was a very frustrating time, if you need any help or have ANY questions please ASK! The first doctor we went to didn't act like they'd ever encountered anything like what my son was experiencing so we went for a second opinion. The second doctor said much the same as yours "it is a faily common disease (AA), see- we have a space for it on our appointment sheet" like that meant they saw it often. I had to ask specifically HOW MANY children and what the youngest age was they had treated- turned out they had only seen about 10 children and my son was the youngest. I agree that there aren't any support groups that I could find in dealing with PEDIATRIC AA or MDS. There also isn't much research which makes it difficult to decide which route to take. Has your son been HLA typed just in case he does need a BMT in the future? Does he require blood AND platelet transfusions? I hope things continue to go smoothly and you find answers to your questions. Please let me know how things progress.
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mother of 3 yr. old diagnosed MDS with Trisomy 8 September '09
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