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TOPIC: Wait and see?

Wait and see? 2 years 8 months ago #62371

  • Acusimano
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My daughter is 5 years old and has had chronic ITP for 2 1/2 years (typical counts are 5-15). My doctor is fabulous and my daughter seems unaffected by the disorder honestly. She has minimal bruising, no nose bleeds and is very aware of her limitations. She wears a helmet during lunch and PE at school and also has a 504 plan in place. So far the doctor has wanted to "wait and see" how things progress due to the lack of other symptoms. She has offered medication and transfusions but up until now, we didn't see a reason to go that route. We have a 1 year follow up appointment tomorrow (I'm a mess) and I'm wondering how other parents would proceed at this point?

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Wait and see? 2 years 8 months ago #62372

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Can't speak from a parental point of view as none of mine have ITP but from a personal point if no symptoms don't treat.
I would give anything to be medication free. No drug is totally risk free.

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Wait and see? 2 years 8 months ago #62376

  • 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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I'm not the parent of a child with ITP; I was the patient. But if you've gone on this long and what you're doing is working, why change it. Does she have any symptoms?

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Wait and see? 2 years 7 months ago #62512

  • Keatonsmyangel
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My 2 year old has had ITP for knowingly 11 months now. During the first month it was horrible he had bruises constant petechia. There was a few nights of moth bleeds but it came from an ingury he had. We went through the helmet phase the gate phase his lowest count was 1 and then 6 then 14 then 12 and now 22 so we did treat him when he was at 6 with IVIG but that boosted him up to 14 which everyone had hope for a higher count. The IVIG was about 5 months ago the doctors have been begging us to treat him again but we will just wait and see. Adding Papaya Leaf extract to his juice has helped with his count a lot. We missed a few appointments and got a call from the social worker at the hospital so I would advise on missing appointments. We just really hate having to be forced into treatment.

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Wait and see? 2 years 7 months ago #62514

  • mia6810
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  • I am Mia's mom. Mia is 7 years old. She was diagnosed with ITP at the age of 1. She was again diagnosed with chronic ITP a year later, at 2. She had very low platelet until the age of 3. Her platelets had been normal for over 2 years.
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I’m not 100% sure of how your experience is but I would like to tell you ours. My daughter was diagnosed at a year old. She went from having acute ITP to having chronic ITP as well. We were always told to treat the symptoms and not the numbers, so that’s what we did. She never had nosebleeds, bit of course had bruising and petechia. She was under 10 for a while, we never treated. She dropped down to 4 one time as well. We never treated her ITP because that was the suggestion of our children’s hematologist. Her counts eventually started going up and she was under 20 for some time. Then under 30 for some time, then unde 50 for some time. She had low platelets for over 2 years and we never treated. Her counts have been normal since she was 4. She’s 7 now. We were told that ITP in children is different than adults and that kids have “big platelets”. Not a lot of platelets but they were big. Good luck on your journey, just know that different hematologist can have different opinions. This was just our experience and not every experience is the same.

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Wait and see? 2 years 7 months ago #62517

  • Acusimano
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Thank you so much for your helpful response! ITP can be so scary! We've had some changes since my post last week. My daughter's counts as of last week were 104! They've never been above 15 in two years. We are going back for a re-test in two weeks to make sure they are still high and it wasn't just a fluke. Is that a possibility? If they are still high, she will no longer need to wear a helmet at school or need other restrictions! I am so hopeful!

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Wait and see? 2 years 7 months ago #62518

  • Acusimano
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You poor thing! That is awful to feel forced into treatment. The option should be all yours. I have hopeful news for you though. My daughter has never had counts higher than 15, and had a count of 104 last week! We go back in two weeks to see if its still high or just a fluke. If its still high, no more helmet at school and no restrictions. I'm so hopeful! No rhyme or reason, just went up!

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Wait and see? 2 years 7 months ago #62522

  • Sandi
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If you are being forced into treatment, get another doctor. There are many who recommend no treatment for a child.

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Wait and see? 2 years 4 months ago #63500

  • sandrajames
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Don't worry! Everything's going to be okay!

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