Platelet Disorder Support Association

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Parents with ITP

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10 years 3 months ago #49389 by Kharys
Parents with ITP was created by Kharys
There is a lot said about having children with ITP but how about having ITP while trying to raise children. I have ITP for 22 years and now I have two 9year old boys. My kids have hung out at the hospital with me, gone to the ER and could probably access my chest port as well as most nurses with how many times they have watched it happen. There are also the problems of keeping up with kids through fatigue and body aches. Anyone struggling with parenting while having ITP?
  • 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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10 years 3 months ago #49395 by Sandi
Replied by Sandi on topic Parents with ITP
Not any more, but I did. I had three young kids when I was diagnosed. The hardest part was trying to be a normal parent while on steroids, and I did my best. My plan was to keep things as normal as possible for them, so I kept their lives the same as they were before ITP. It took a toll, yes. There were times when I couldn't handle them en masse, so I'd bring them to my room after work one at a time to spend time with them. I had a few other tricks as well.

What treatments have you tried?
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10 years 2 months ago #50508 by Kharys
Replied by Kharys on topic Parents with ITP
I have been through just about everything at one time or another. Right now Rituxan every other month with occasional infusions of IVIG and platelets when counts get too low. Summer has been busy keeping up with kids so I don't get online much. My boys are well versed in visits to doctors and emergency rooms.
  • 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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10 years 2 months ago #50510 by Sandi
Replied by Sandi on topic Parents with ITP
Have you tried Promacta or N-Plate?
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10 years 2 months ago #50515 by Ann
Replied by Ann on topic Parents with ITP
Just out of interest, how many Rituxan doses have you had now?
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10 years 2 months ago #50536 by Winnifred
Replied by Winnifred on topic Parents with ITP
My kids were young when I was diagnosed my kids never went with me to appointments/ treatments. I was very lucky in that there was always a family member to watch them.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
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