Hard to Crossmatch 2 year old Thal Major

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Offline CamisMom

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Hard to Crossmatch 2 year old Thal Major
« on: August 31, 2012, 03:26:33 AM »
Hi Everyone,

This is my first post on the board.  I have a 2 year old little boy with Beta Thal Major.  He's been having transfusions once every 4 weeks since he was 8 weeks old.  The doctor told us that he has a very rare crossmatch and that its hard finding blood for him.  Today I received a call from his doctors and was told that they think its in his best interest to consider a Bone Marrow Transplant.  They seem to think that there will come a time when he may not have any blood available to him.  Does this sound right?  Can blood be found from other states? (I live in California) I'm just finding it so hard to believe that out of everyone in the U.S. there would be nothing available? Does anyone know how this process works?  I'm terrified for my precious baby. 

Also, I'm curious if there are any Thal patients in the San Diego, Ca Area? I would love to have someone local to talk to. This whole process is so scary.

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Offline JV

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Re: Hard to Crossmatch 2 year old Thal Major
« Reply #1 on: August 31, 2012, 03:42:59 AM »
Hello and welcome. Did you try contacting the Childrens Hospital of Oakland? They would have more information. This sounds odd to me...maybe they meant the HLA match was an odd match. For example, my daughter, who is 2 and thal major, got a weird combination of my wife and I when our blood was tested. Could they mean that and not the actual blood?

I would not overreact to this and would seek another opinion..such as the Childrens Hospital of Oakland. Remember this board will always be there for you.

James

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Offline Andy Battaglia

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Re: Hard to Crossmatch 2 year old Thal Major
« Reply #2 on: August 31, 2012, 01:47:52 PM »
I totally agree with JV. Contact CHO or LA Children's Hospital. These are two of the best thal centers on earth. They may concur with the recommendation for a BMT, as they often do suggest this when there are issues regarding an adequate blood supply. Please keep in mind that the success rates for BMT have gotten much better over the last decade and that the mentioned hospitals are part of this success.
Andy

All we are saying is give thals a chance.

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Offline CamisMom

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Re: Hard to Crossmatch 2 year old Thal Major
« Reply #3 on: September 01, 2012, 03:00:11 PM »
Thank you both for your responses.  I will keep you all updated on our decision.  If we choose BMT and his sister is a match, I will take everyone through every step of the way.  I look forward to getting to know some of you guys and your families through our journey. 

Re: Hard to Crossmatch 2 year old Thal Major
« Reply #4 on: September 04, 2012, 02:40:20 AM »
If you can find a regular blood donor who is closely matched for your son, you can set up direct donation. I know others in California who do this. The fewer donors for a patient, the better, as less risk of developing antibodies.
The families I know have the donor go 5-7 days before the child's transfusion, and the blood is processed specifically for the child.
I know a family where the mom and dad do direct donation for their child.
I also suggest you contact Eileen Scott at Cooley's Anemia Foundation.
Sometimes the hematology/oncology doctors are so used to "curing" cancer patients, that they can "push" BMT on thal patients - a condition in the U.S. that can managed in many cases. BMT is NOT being advocated by Cooley's Anemia Foundation, even when there is a perfect, silbing match.
I realize there are exceptions, such as people who have very difficult to match blood types.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

 

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