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Treating a 2 year old with Rituximab

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13 years 6 months ago #23784 by mcanter
Treating a 2 year old with Rituximab was created by mcanter
Hello,

My son has been battling ITP since November of 2011. The odds of recovery were supposed to be in his favor, +80%, but he has to be different I suppose. He doesn't respond well to IVIG and steroids are effective but extremely temporary. My son's hematologist now wants to start him on Rituximab, but I have definite reservations. The doc told us that when my son begins treatment, he will have to be hospitalized for a minimum of THREE days - to monitor for side-effects and what not. Reading from other people's experience with the drug, this does not appear to be the standard procedure. I was wondering if anyone else has gone through this with young ones, and if a three day hospital stay was required as well?

I'm at a loss. Please help.

THanks.
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13 years 6 months ago #23796 by jrosenfe
Replied by jrosenfe on topic Re: Treating a 2 year old with Rituximab
Hang in there! It is frustrating. A doctor told me once that this is more frustrating than most diagnosis because there is no correct treatment path or standard one. Go with your gut. My daughter has had it for 2 years and we finally did a trial study that seem to work. we have tried most of the standard treatments, all worked but none with lasted results. I still believe this will correct it self one day. Good luck and it is good to vent!
The following user(s) said Thank You: mcanter
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13 years 6 months ago #23829 by mcanter
Replied by mcanter on topic Re: Treating a 2 year old with Rituximab
My husband and I definitely try to go with our gut, we are just constantly faced with doubt that we are not doing the right thing. Plus our hemo makes us feel that if we do nothing, that we are putting our child in danger and that makes it even harder for us. Definitely thinking about seeking another opinion once i can break away from work. I have to let go and let God - but I don't believe that the medical professionals we are speaking with believe this to be the correct medical approach. Very difficult times...
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13 years 6 months ago #23895 by colinsmom
Replied by colinsmom on topic Re: Treating a 2 year old with Rituximab
My son, Colin, has had ITP since 1999 when he was 18 months old. Colin has had an issue with his platelets every 2 years since then. He is now 14 and we are having an issue with low counts again. Colin achieved an 18 month remission with Rituxan in 2010, we started a second course yesterday. His count is currently 3,000 - he is currently oozing blood from his mouth and nose and has petechia everywhere. I know it is scary, and I think now that he is a teenager it may in fact be worse because he is not good at not bumping into things or staying low key. Anyway, in 2008 Colin became refractory to all medication, ivig, prednisone, vincristine, whin rho, 6MP. Rituxan is the only thing that gave Colin a higher count, although it took him 6 weeks to show any signs of improvement. Colin has no side effects from the Rituxan at all and we are hoping it will work this time.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 5 months ago #23947 by Sandi
Replied by Sandi on topic Re: Treating a 2 year old with Rituximab
Mcanter - I have never heard of anyone being admitted for Rituxan. Most side effects, if they are going to occur, happen during the infusion. However, I can't imagine that erring on the side of caution could be a bad thing.
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13 years 1 month ago #27176 by crystal lee
Replied by crystal lee on topic Treating a 2 year old with Rituximab
Just curious how your doing?? Did you do the treatment? Did it work?
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