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TOPIC: 5 year old son ITP

5 year old son ITP 7 months 3 weeks ago #64816

  • mhbaker82
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My son was diagnosed with ITP on 9/7/18 after severe bruising and petechiae that began on 8/31/18. His platelets were at 5000 and he was anemic. His subsequent blood tests have revealed platelets at: 9,000; 12,0000; 54,000; and 13,000 in that order. His WBC has been steadily increasing with it now reaching just over the high limit. His neutrophils are also elevated. Yesterday, he had a headache, was feverish, and almost passed out, but by the time we got to the ER, he was back to normal and they sent us home. He had a similar incident a couple of weeks ago where he had a headache, a high spiked fever (104.5) and then he vomited. Again by the time we got seen in the ER, he had no symptoms and they sent us home. At his appointment on Thursday the dr said the up and down of his platelet count is expected and not to be worried about the elevated WBC and neutrophils. His RBC has returned to normal.
Has anyone else had this experience? I feel like one of those crazy moms overreacting when I take him to the ER and they say he’s not having any symptoms and send us home but I don’t want to take any chances. He complains of his legs hurting and being tired and he is more easily fatigued... I know the fatigue is a result of the low platelets. I don’t know what I’m expecting by posting... just looking for similar experiences I suppose. Thanks for your time.

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5 year old son ITP 7 months 3 weeks ago #64817

  • MelA
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Is he on any medication? At his appointment on Thursday what did the doctor say about the headache/fever/almost passing out and the headache/104.5 fever/vomiting?? Personally I'd want an answer for that 104.5 fever - how long did it last? Is he seeing his pediatrician or a pediatric hematologist?

I'm an adult with ITP so really don't know about children's ITP - but I do know as a mother I'd want to know why the fever etc.
Bad enough for an adult to have low platelets, breaks my heart when I hear of a child with it!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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5 year old son ITP 7 months 3 weeks ago #64818

  • 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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Well, I don't think any mom is crazy for worrying about her child and seeking medical care! I would have been worried about the fever too.

He seems to have several things going on, so those should be separated out. If the red cells are normal, you can cross that out. Elevated white cells are common with a virus or bacterial infection, so that could be the cause of that. Hopefully the white cells will return to normal after he is better. As for the ITP, try not to worry about that unless he is showing symptoms such as heavy bruising, petechiae, bleeding, etc. The numbers themselves are not cause for an emergency, but symptoms can be. Counts can also drop when a person is ill, so hopefully those will go up as well.

For now, try to take one day at a time. I know it's scary when your child is sick. Did he have any vaccines prior to the drop in counts? Vaccines are known to cause ITP (especially the MMR) and vaccines can be contraindicated when one has ITP. Just an FYI.
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5 year old son ITP 7 months 3 weeks ago #64819

  • mhbaker82
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Thank you for your reply. His bruising is definitely less but the petechiae is showing up more. No bleeding but we are being very careful. He hasn’t shown any sign of being sick and he hasn’t received any vaccinations for several months. He was all caught up before school so he didn’t have to get any.

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5 year old son ITP 7 months 3 weeks ago #64820

  • mhbaker82
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He’s not on any medication. The passing out and headaches happened the day after the doctor appointment but I did call them on my way to the ER and the ER doc called them while we were there. They said that since he wasn’t showing any symptoms currently, that we could go home. As for his fever, it lasted maybe fifteen minutes. The ER dr that time said it was likely unrelated to the ITP and since it was gone, there wasn’t anything to do.
We see a pediatric hematologist every two weeks and I am taking him to his regular pediatrician tomorrow to go over everything and give her copies of his latest blood work.

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5 year old son ITP 7 months 3 weeks ago #64822

  • maria3132
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Hi there,
I am sorry you are going through this. I can relate to all but the fever and throwing up, as my son was diagnosed on July 7, 2018 with a count of 1,900. Counts remained pretty low for a few months but then inched up and right now he has no symptoms. Next checkup is October 10. You can find our story by clicking on my name, then navigating to Forum Posts and then to the thread "Petechiae, but no bruising in 3-year old."

Statistically, your son has a lot going for him, including his young age, low count at diagnosis and a seeming viral infection associated with onset. There is a very good (and reassuring) Nordic study on childhood ITP - I will look it up for you later.

My son had elevated eusinophils and slightly prolonged PTT/aPTT but this didn't change the diagnosis.

I think it's great that you are seeing a pediatric hematologist. What part of the country are you in? Johns Hopkins and Sloan Kettering are the places to consult if this doesn't turn out to be garden variety childhood ITP.

I am traveling for work but feel free to ask anything - I will try to respond before too long.

One thing I will say is that my son has tolerated the (slow) ivig treatments very well and that greatly reduced my anxiety that he might hurt himself and/or start bleeding.

It will get better in (relatively short) time for all of you! The first few weeks are the most stressful in my view. This is an amazing, knowledgeable, kind community and a good place to find support.

Big hugs and hang in there!

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5 year old son ITP 7 months 3 weeks ago #64823

  • mhbaker82
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Thank you for your response! His pediatric hematologist is at John Hopkins. As for treatment, they said they don’t normally treat kids with itp unless there is a bleed. We are now at the one month mark. I hope he’s on the mend soon.

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