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2 year old with chronic ITP - rituximab

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12 years 3 months ago #34397 by arwen
2 year old with chronic ITP - rituximab was created by arwen
My two year old son just completed his 6th IVIG treatment in the last 5 months. His dr said we have to start looking at his condition as chronic and look at Rituximab as a long-term treatment consideration. Of course, this is very scary to think about when I read about side effects. Anyone have any advice or wisdom to share?
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12 years 2 months ago #34404 by karatemom3
Replied by karatemom3 on topic 2 year old with chronic ITP - rituximab
Sorry, I can't help you about the Rituximab. My son was in his 20's when he first got it after many years on Prednisone. More treatments are available now than when my son was young. Have you tried other treatments? I can give you the usual advice. Research. Ask questions. Write them down and take them with you to his appointments. Get a second opinion if you can. I didn't do that at first. I was afraid to question the doctor and I figured if I didn't know anything I wouldn't have to make any decisions. Then my ignorance put my sons life in jeopardy. My advice is to believe in yourself. You WILL figure out what to do! It WILL be the best thing for your son. You are already on the right track coming here and asking questions. Keep up the good work. Joan
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12 years 2 months ago #34406 by Ann
Replied by Ann on topic 2 year old with chronic ITP - rituximab
Does your son bleed badly at low counts? I ask because it's normal not to treat children with any count unless they bleed.

Rituxan is a heavy duty treatment. One ITP expert in the UK said that she would prefer not to use it on children because their immune system is undeveloped and messing with it could do damage.
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12 years 2 months ago #34407 by alisonp
Replied by alisonp on topic 2 year old with chronic ITP - rituximab
I was also about to ask what happens when your son doesn't get treated - does he bleed badly (more than bruises) and how low does his count go?

Five months is not usually considered chronic, and I think that most drs prefer not to treat until at least the 1 year mark if possible. Not treating is usually both acceptable and safe. As Ann says, rituximab is quite heavy duty for a small child - if you are thinking of going down that route, I would recommend at least getting a second opinion first. I am guessing that you are in the UK, as you called it rituximab - if so, the ITP Support Association should be able to help you with some recommendations for doctors.

Good luck
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12 years 2 months ago - 12 years 2 months ago #35146 by ttlshiwwya3
Replied by ttlshiwwya3 on topic 2 year old with chronic ITP - rituximab
My son did Rituxin about 3 weeks ago. It took me about 6 months to finally agree to it because I was fearful. Funny thing was he reacted fine to that whereas he had bad reactions to IVIG and Win RO. I was so hopeful it would work as it was the 1st attempt to treat the disease verses the symptoms. His numbers didn't budge...he's been at 10,000 down to 4,000 during and after the treatment. I would recommend it to anyone only because it is one if not the only way to essentially fix the problem of ITP. The others just treat the symptoms in hopes the child will outgrow the disease.

One more thing after reading other replys, If you son has only had it 5 months I would wait...there is hope for him. Im surprised they'd do so many ivig's so soon...what are his numbers? Was he having active bleeding?
  • 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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12 years 2 months ago #35164 by Sandi
Replied by Sandi on topic 2 year old with chronic ITP - rituximab
Rituxan does not necessarily fix ITP. It can give remissions to some people, but generally, it lasts about a year.
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12 years 1 month ago #35596 by crystal lee
Replied by crystal lee on topic 2 year old with chronic ITP - rituximab
Hi, just curious if you ended up doing the Rituxan. If so how did it go? How were the results/ side effects?
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