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TOPIC: Chronic ITP - Children

Chronic ITP - Children 3 years 9 months ago #56221

  • 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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This has been requested by a parent.
The following user(s) said Thank You: Hope and Faith

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Chronic ITP - Children 3 years 9 months ago #56255

  • Hope and Faith
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Anyone else out there with a child with Chronic ITP. My little one was 8 years old when diagnosed. It has changed our lives.

She is not able to got to school. All her competitive sports have been discontinued.

How are you coping?

My daughter got off steroids last week. Platelets went from 3 to 36 on steriods. After being off steroids for one week she is again down to 7.
She is bruising, wet bleeding off and on, and forming petchia. Now doctors are strongly considering eltromopag. I am very scared of the side effects...
any thoughts..

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Chronic ITP - Children 3 years 9 months ago #56264

  • TerriC14
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My daughter was diagnosed at 16 and her counts maintained in between 40 to 50 for almost a year, and then they dropped to below 10. She was lucky in that she did not have much frank bleeding, but she honestly just never felt well. I am not sure whether the autoimmune disease left her susceptible to every virus that she was exposed to or just being run down left her open to catching everything or whether the fact that she was always sick dropped her counts. She was also a bruised up mess and overwhelming fatigue. She had a round o IVIG for heavy periods and her counts promptly dropped, then she had GI bleeding and needed steroids and IVIG. Her counts stayed up for about 6 weeks after that. Her doctors do not like to use steroids to maintain counts, they only like to use it as rescue treatment or would have used steroids before dental work to bump her counts. After the GI bleed the doctors suggested we consider some treatment. We chose Promacta. The dietary restrictions can make it a little tough. She was started on 50mg daily and did have some mild side effects at that dose (decreased appetite and some increased hair loss). But she is a chunky kid with really thick hair so it was not the biggest deal. Her dose was quickly tapered and the side effects went away. After a few bumps in the beginning she started maintaining good counts and I am happy to say that she has bloodwork this coming Tuesday and if her counts are good we are going to stop it after about 16 months. Her doctor told me that they just had Grand Rounds with a hematologist from Childrens Hospital of Philadelphia who said that they are having good results and seeng kids in remission after Promacta.
I was very skeptical about starting her on the drug. It to me is "heavy duty" medication and of course I am worried that down the road side effects will manifest. I am not anti medication but I feel that the choices need to be carefully weighed because they all have some side effect. For her it has been great, she feels so much better the overwhelming fatigue is gone. My suggestion though would be to make sure that the doctor that you are working with is familiar with Promacta in children. It was actually approved for Pediatric use in the US around the time my daughter started taking it (she was already 18 so it did not matter in her case). Even many of the Pediatric hematologists are not completely familiar with it. My daughter hopes never to have to go the IVIG steroid route again.
The following user(s) said Thank You: Hope and Faith, maria3132

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Chronic ITP - Children 3 years 9 months ago #56398

  • deidrieb
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Hello my daughter is 4 years old, has chronic ITP, and has just been diagnosed with Lupus. Any advice or support anyone can offer would be greatly appreciated. We have been battling ITP for a while, but not quite sure what to expect now with Lupus in the mix.

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Chronic ITP - Children 3 years 6 months ago #57908

  • HeidiSt
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We have an 8 yo boy, diagnosed at 5yo. definitely autoimmune. I find it real hard to stay sane at times. Treatments work for short periods only and so we are on the watch and wait program with only scheduled testing 2 times a year at the Hematologist 3 hours away. For the most part his symptoms are mild and I completely acknowledge that, He typically sits between 23 and 27 and we let him lead a relatively normal life, I do feel the lack of knowing has us take uncalculated risks. eg. last year we planned an off road pedal biking - camping adventure, in which he didn't get hurt. However, he returned with a bad diarrhea and blood in his poop and the coinciding trips to the dr had his count at zero plus being exhausted from the trip and the bug, IDK, I think we felt better planning activities based on his count rather than 'leading a blind normal life" We are over an hour from any treatment centre, and I feel more like we are abandoned and hoping for the best, rather than watchful waiting. This week, we have all had a real bad cold, except our son. I requested a blood test and they have agreed, but honestly, I feel better knowing, it doesn't make me fretful, it really is the support I feel i need to make decisions.

I am so glad I wrote this, because it has let me find the words that I keep wanting to tell the dr.!!!

When he is 23, I say yes, jump on the trampoline, yes go play soccer, when he is zero, i say sleep in, I make arrangements with the school that he can be late if it means his body getting enough rest, and i tell the gym teacher no to dodge ball, we work on a big lego project and to me that is leading a normal life with a kid with ITP.

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Chronic ITP - Children 3 years 6 months ago #57915

  • 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
  • Posts: 12435
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  • Thank you received: 2350
It seems as though you are doing a great job with your son, Heidi. You got him through three years so far...you can be proud of that. I'm sure it's not easy, but never lose the hope for remission. I have seen it happen after years of chronic ITP. Good luck to you and stick with us!
The following user(s) said Thank You: HeidiSt, 2tleititisa

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Chronic ITP - Children 3 years 6 months ago #57929

  • HeidiSt
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Yesterdays blood test was 45! woohoo. that is the highest he has been on his own and yes, I feel great and thanked my dr. for the reassurance. I'm always reading on here, it is a wonderful resource.
The following user(s) said Thank You: maria3132

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Chronic ITP - Children 2 years 11 months ago #60214

  • 2tleititisa
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O my! My daughter has been dealing with ITP since she was 2 is so overwhelming! I have a fear that something else will happen not sure why seeing so many kids were we go battle cancer, and lupus! So sorry about that! Not sure what information to give other than to say my daughter has went down the list for treatment she has had Steroids, TWO different types, WinRHO, IVIG (several times) dapsone nothing has lasted ! May I ask how did she get lupus? Or what trigger it

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Chronic ITP - Children 2 years 1 week ago #64088

  • maria3132
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As the mom of a newly diagnosed kid (whose count at diagnosis was 1.9k), i'm so glad to read about your son's climb to 45. I hope he has continued to do well!

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