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TOPIC: 18 month old Daughter diagnosed with ITP

18 month old Daughter diagnosed with ITP 6 years 9 months ago #39487

  • jrande
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Our daughter Julia was diagnosed last week with ITP. Her count three weeks ago was 42, the week after, it was 25 and last week it was 30. The Hematologist Specialist at Texas Children's Hospital told us we just needed to "wait and watch". Jules is perfectly healthy and there are no other signs of bleeding. She was not sick prior to ITP and the bruising on her little legs, arms, bottom and head are what promoted us to take her to her pediatrician in the first place.
They gave us a window of a year to see if it's "acute" or not.
Did anyone get a second opinion about treatment? I don't want to put her in any danger. She's a very active 18 month old and if I could I would have her wear a helmet at all times. Yes even in the bath tub. I'm just worried for my little girl. I have 4 daughters she's our youngest. It's tough on all of us. Prayers for those of you who have ITP and for those who have children with ITP. I had never heard of ITP until now. :(

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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39492

  • 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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Jrande:

It is common not to treat children because of side effects. Also, your daughter's counts are not dangerously low at this point. A second opinion is never a bad idea, but the protocol is to watch and wait most of the time.


pdsa.org/forum-sp-534/12-newly-diagnosed/27819-new-guidelines-for-managing-itp-in-children.html
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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39531

  • lana10123
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My daughter is 3, we watched and waited for 3 months. We didn't treat until she got down to 12,000 and many bruises.
Her doctor tried her best to keep positive and try to avoid treatment. We ended up doing IVIG. She has been okay for the passed few weeks.
Good luck.
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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39533

  • ttlshiwwya3
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When i hear stories of new onsets of ITP I am happy for you as your child is very likely to have it resolve on it's own. It is very rare for kids to have an acute case develop into chronic. My son has had it for 3 years now and it is so disappointing to know he is now labeled chronic and has to lead a restricted life. I hope one day they find something to work to fix this along with many auto immune diseases.
I did take him for a second opinion to a children's hospital in Chicago and they said the same things my first hematologist said. They leaned towards a newer medicine Nplate but I am not ready to to there yet as research shows it can damage the bone marrow. Instead we have opted to do WinRho as needed which is about every 2 months.
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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39544

  • jrande
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@ttlshiwwya3 I'm sorry to hear about your son. I too hope they find something to help take care of ITP along with all the other auto immune diseases. More research needs to be done. I had never heard of ITP until now. I'll be thinking and praying for your family.

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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39545

  • jrande
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Glad to hear your little girl responded well to the IVIG. I'm sorry she had to go through with it. We don't have to take Julia back to the Hemo Specialist until the end of February. I'm anxious to know her count, she keeps getting new bruises on her legs, thighs and arms. Still no other signs of bleeding though. Seems the harder we try to keep her from hurting herself the more she falls, bumps into things and wants to jump off of everything. Bruises just appear out of nowhere and I can't remember what she could have done to get a new one. Which frustrates me. She wasn't able to get her current vaccinations that she was due to have last week because of ITP. We're doing our best to be patient and just keep thinking about all those like you, who have children who are going through treatments... praying for your daughter and for you.

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18 month old Daughter diagnosed with ITP 6 years 9 months ago #39559

  • 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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Ladies - one thing to always keep in mind is that 'chronic' does not necessarily mean 'for life'. People can and do go into remission all the time. Chronic just means that the child has had ITP longer than a year. Acute means less than a year.
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18 month old Daughter diagnosed with ITP 6 years 8 months ago #39597

  • KimberlyHall
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My son has had ITP for 2 years and I'm curious if WinRho always worked for you and how old your son was when he was diagnosed. We tried WinRho when he was first diagnosed and it didn't seem to work for him, but I wonder if now it might be worth trying again instead of using steroids. Does your son have any negative side effects with the WinRho?

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18 month old Daughter diagnosed with ITP 6 years 8 months ago #39598

  • ttlshiwwya3
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Actually the IVIG seemed to not work as well for us. The only problem we have with the WinRho is that he gets a really bad headache and vomit's a few times in the 24 hours after the winRho. He has had shortness of breath but after our last treatment I wonder if it's all in his head becasue he started having all the usual symptoms before the medicine was even given. I much prefer WinRho over the long lasting effects of the steroids, although he'd probably disagree. But in his 12 year old mind feeling sick is way worse than long term effects of prednisone. One other thing they watch is the hemoglobin and for my son it only dropped a bit but it always rises back up. In my head the WinRHo is made from human plasma which is a natural ingredient verses man made. I could be way wrong in my thinking, maybe it's just as toxic as non man made drugs?? My son is also on Dapsone which I am not happy with but it was my choice because I am grasping at straws to keep him stable. I am leaning more and more at taking his spleen out in hopes he'd be cured. I did the same with the Rituxin, put it off for 6 months becuase I am worried about all the drugs long term, but then looking at the one option to cure him we did it. Surprisingly he didn't get ill at all after each of 4 infusions of rituximeb.

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18 month old Daughter diagnosed with ITP 6 years 8 months ago #39615

  • 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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Ttlsh:

Splenectomy isn't a cure, it's just a treatment like the others. It can appear to be successful at first, but can fail even years later. The problem is that if it fails and the patient needs immunosuppressants, they can be really immuno-compromised.

There are other problems associated with splenectomy so I'd research that before making that decision.

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