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Parents of Children with ITP
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confused and worried dad
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confused and worried dad 3 years 7 months ago #61722

  • hugoboy
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My daughter has been diagnosed with ITP for the last few years. Her counts range wildly from the high 40K to the low 8K, every blood test feels like a crap shoot which makes my wife and I even more frustrated/sad/angry. My daughter who is turning 15 tomorrow was crying last night that her headache is not going away, we felt so helpless.
I am looking for any referrals of doctors in NJ as all the ones that we have been to have little to no bedside manner and we are trying to find someone who is compassionate about the situation.

thank you and I am glad I have this board to help me on this journey

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confused and worried dad 3 years 7 months ago #61723

  • 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 is a resource of the PDSA which can help you find a doctor.

pdsa.org/resources/find-an-itp-doctor.html

Have you looked into the reason for her headaches?

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confused and worried dad 3 years 7 months ago #61725

  • hugoboy
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well my wife took her to the pediatrician and he saw an ear infection and the onset of a sinus infection but she had a fainting spell on Saturday which from what I read is a bad sign if you have this condition. The more I read about the worse case scenarios the more I get worried and start to cry.

thank you for your feedback

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confused and worried dad 3 years 7 months ago #61733

  • hugoboy
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my daughter had a blood screening yesterday, with a count of 17K last Friday it was 8K. No bleeding and I have started the reach out of doctors on the list you provided yesterday.

Thank you!!!

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confused and worried dad 3 years 7 months ago #61737

  • 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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Fainting isn't common with ITP and the main problem would be if she fell and hit her head. That could have been caused by the ear infection if she is dizzy. Sinus infections can definitely cause headaches. Her infections are probably the cause of the recent symptoms and that will go away.

Has your daughter treated at all? There are a few options that would get her counts into a safer range. Safer counts = less worry.
Try not to freak yourself out about worse case scenarios. They rarely ever occur. If your daughter does not have bleeding symptoms, then she is handling the low counts okay. That is a good thing.
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confused and worried dad 2 years 4 months ago #65595

  • Turbo01
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Hello, I’m so sorry your little one is going through this. I can completely realate as I have an almost 5 year old with itp diagnosed September 2018 and we are still dealing with it in January 2019. It’s been a whole 4-5 months of this horrible roller coaster. We were in the hospital 2 times for ivig.

I would love to get an update on your child and any info you may have and what you went through. I just cannot see the light at the end of the tunnel every time we think she is doing great we get hit with petechia again.

Thank you in advance my prayers are that your little one has beat this.

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confused and worried dad 2 years 4 months ago #65615

  • 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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Turbo:

IVIG is almost always a temporary fix. I know you are unhappy about the two IVIG treatments, but that really is a great response. For most people, it only lasts a few days or a week. ITP can remit at any time, so keep hoping for that. In the meantime, try to also tell yourself to buckle in for the ride because it might not happen in the near future. You are doing all that you can for now; you are doing your best. Just hang in there, take one day at a time, and enjoy the good days when you can.
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confused and worried dad 2 years 4 months ago #65631

  • alisonp
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10years or so after my son's diagnosis, I actually think that taking one day at a time is the secret to living well with ITP. Don't spend the good days anticipating problems, spend them well. On the not so good days, don't anticipate things getting worse or better, just accept them for what they are.
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confused and worried dad 2 years 3 months ago #65886

  • Turbo01
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Sandi, thank you. Trying to make the right decisions they are just so many different cases that it’s hard to relate 100% with someone else who has experienced this. Many children on this forum seem to have below normal levels without ivig or steroids. My little one is in normal range then the next 2 weeks drops really low. I cannot understand any of it.

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