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Question about Retuximab for my son aged 13

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15 years 3 months ago #9090 by skilcal
Hi, Our son have been struggling with ITP for the last 6 years or so. He also has DiGeorge syndrome with a compromised immune system. His bone marrow produces lots of platelets and WBC etc. After numerous test we do know its his own immune system that is attacking the platelets and now recently his WBC. We have tried WinRHo, platelets, IGG and steroids. He never acts like others for side effects etc. On the steroid he had no side effects at all. Of course they also did not work like everything else. The next thing the docs want to try is Rituximab which we are very against. After this the next thing they will push for is spleen removal. He has also had heart surgery and has kidney stones related to his Digeorge syndrom. His platelet count bounces around 0 to 5000 and his WBC is 1.9. Yet he is rarely sick, minor bruises & a very occasional nose bleed.

Our question have many teenager had good luck with the Retuximab? Also any bad reactions to the med? Our parental instinct is telling us no and we really want to go down a more natural route. We canno find anyone with DiGeorge syndrome & ITP so it worries us to even try this drug.

Thank you,
Skilcal

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15 years 3 months ago #9172 by isaacsmom
Replied by isaacsmom on topic Re:Question about Retuximab for my son aged 13
I don't know how I would feel myself with all of those other things... I can tell you Rituxan was what did the trick for my son. He was only 3 at the time though... He had tried pred, IVIG and Winrho with little results. After Rituxan it has been 4 years since he has had anything! It took a good 3-6 months before his counts evened out, but for the last 3+ years he has had normal, or near normal counts.

Good luck with your decision!

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