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Acute ITP - how long will doctors monitor?

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9 years 6 months ago #53435 by MaeW
Acute ITP - how long will doctors monitor? was created by MaeW
My 5 year old daughter was admitted to the hospital last week with her platelets at 2. After ruling out other causes, she was diagnosed with ITP and given a round of IVIG. She was released the next day with her levels up to 24.

I think her levels have continued to rise through the week, as her bruising looks much better than it did last week. We follow up with her hematologist tomorrow, but can anyone give me an idea of how long she will be monitored? I am a little bit worried that her levels will drop again, but at least now I know what to look out for. With acute cases, do kids tend to yo-yo a bit before normalizing?

Thank you! Reading this forum has helped me feel more at ease since her stay in hospital. ITP definitely seems like a manageable diagnosis.
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9 years 6 months ago #53437 by Aoi
Replied by Aoi on topic Acute ITP - how long will doctors monitor?
Welcome to PDSA. ITP is generally manageable, even in acute cases like your daughter's. However, there are no simple rules for what will happen, and the short-term course can be variable. Some people respond quickly and easily to one treatment, but many yo-yo as the treating docs try several options before finding one that works reliably. Fortunately, ITP tends to be self-limiting in children. In other words, your doctors will probably monitor your daughter very closely at the outset, then less frequently as she stabilizes, and eventually only occasionally to make certain she remains stable. This can happen in as little as a few months but more often takes place over a number of years.

Others here have more experience with pediatric ITP than I do, and there are several threads devoted entirely to the subject. I hope everything works out for you.
The following user(s) said Thank You: MaeW
  • 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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9 years 6 months ago #53438 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
Do you mean acute as in 'appearing suddenly' or acute as in 'not lasting long'?

I need that answer before I can answer.
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9 years 6 months ago #53446 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?

Sandi wrote: Do you mean acute as in 'appearing suddenly' or acute as in 'not lasting long'?

I need that answer before I can answer.

Not long lasting. Her's did appear suddenly, but I working off the assumption that it's a short-term (rather than chronic/lifelong) because I have read that is much more common in children.
  • 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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9 years 6 months ago #53448 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
It's true that 80% of children have acute ITP, but you won't know if it's acute or chronic until time has passed. It can take 6 to 12 months before a label is attached. Acute usually means the ITP remitted within a year (for some doctors, it's 6 months) and chronic means that the ITP lasted longer than 6 to 12 months. Chronic does not mean for life since ITP can remit at any time.

If it's acute, doctors will monitor until they feel comfortable that the counts are stable. The counts usually taper off over time. The counts might be drawn every two weeks, then once a month, then 3 months, etc.

IVIG is usually temporary and counts often drop. It's good to be prepared for that possibility, especially if the response is not that great.
The following user(s) said Thank You: MaeW
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9 years 6 months ago #53457 by frankt
Replied by frankt on topic Acute ITP - how long will doctors monitor?
Hoping your daughter is an acute case. We just recently started this process because of my 5yr old son.

Our hemo has us on the following plan after he recieved 2 rounds of ivig and was released from the hospital.

Every friday for the 1st month he has a blood test. So far his levels are rising, today is his 3rd test. From what the hemo said after the first month she will have an idea if his body is producing the platelet levels and not just a result of the ivig. After the 4th test he can start getting tested every 4 weeks. Then at the 6 month mark she thinks we'll have an idea if it acute or not

This forum is great good luck with your little girl.
The following user(s) said Thank You: MaeW
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9 years 6 months ago #53474 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Thank you, everyone.

She had her follow-up with hematology this afternoon. Her platelets were at 553K. We are to follow up with her pediatrician in a month. I know that we might see a drop after the IVIG wears off, but I feel much better educated about this now. I feel like I know what to look out for and what not to freak out about.

Frank, I hope your son has a good response.
  • 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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9 years 6 months ago #53476 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
That is a wonderful response, Mae! Not a bad count for the first treatment. Keep us updated, okay!
The following user(s) said Thank You: MaeW
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9 years 6 months ago #53800 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Her IVIG was a month ago and today I noticed the bruising is back. Not nearly as bad as before but some spots: inside of knees, hips, petechia on neck. I'm going got keep an eye on it and call her pediatrician if it gets worse again. Her follow up is next Thursday, so still over a week away.
  • 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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9 years 6 months ago #53805 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
Keep us posted, okay?
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9 years 6 months ago #53811 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?

Sandi wrote: Keep us posted, okay?

I will. Thank you. I put off calling today. She is scared of another IVIG infusion since it made her really sick last time.
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9 years 5 months ago #53838 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
We had a recheck this morning - 57. Glad we don't have to do another IVIG right now, but disappointed that it's dropping again.

We go back again next week.
  • 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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9 years 5 months ago #53841 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
I'm sorry to hear that. Hopefully you will get better news next week.
The following user(s) said Thank You: MaeW
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9 years 5 months ago #53918 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Unfortunately, today was a little worse: 34. I'm really disappointed because all of her bruises are gone and I expected good news. We follow up with hematology in another week and if it's less than 10K, maybe another IVIG.
  • 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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9 years 5 months ago #53920 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
Are the IVIG's worth it to you? You could discuss other options. Just a thought.
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9 years 5 months ago #53929 by alisonp
Replied by alisonp on topic Acute ITP - how long will doctors monitor?
You could also try not treating unless/until she has active bleeding symptoms. It depends on where you are in the world but kids are not always treated for a low count by itself and the outcomes are the same as if treatment had happened. In the UK kids are treated for symptoms not counts. Active bleeding doesn't include bruises or petechiae.
Good luck, you never know, it might go back up by itself.
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9 years 5 months ago #53930 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Thank you, Sandi and Alison. I have been doing some reading about treatment and symptoms. It's definitely something to think about and talk over with her hematologist. Hopefully her platelets won't drop that low, and it's a moot point. :) I do worry about her having some accident/emergency and very low platelets impacting her ability to get treatment. She's very clumsy but active child.

I also would like to not rush into treatment, if possible, to see if her platelet levels rise on their own. So far, the only increase we have seen is right after IVIG.
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9 years 5 months ago #54047 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Down to 16 today, so still just checking once a week. Doc said he would recommend one more IVIG if her levels got very low again (they were 2 when she was diagnosed), and we talked about the side effects and what he would do to alleviate them. He also said doing nothing and continuing to monitor regularly is also an option.

So, I guess we will see next week.

Is there anyone who didn't do treatment for a child with levels < 10? How closely were they monitored? I feel like I would want close monitoring to know what's going on, but then again, why does it really matter if we are only treating her if she has symptoms? Is there a level that's too low?
  • 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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9 years 5 months ago #54051 by Sandi
Replied by Sandi on topic Acute ITP - how long will doctors monitor?
Mae:

Alison can tell you all about that. She did not treat her son. You're right, there isn't much point to monitoring if you're only treating the symptoms. Numbers don't matter much.
The following user(s) said Thank You: MaeW
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9 years 5 months ago #54125 by MaeW
Replied by MaeW on topic Acute ITP - how long will doctors monitor?
Her platelet level was 18 today. So the doctor is still comfortable holding off on treatment, and we talked him into waiting two weeks before checking again since next week is a busy one for me at work and she's tired of getting poked every week.

I feel good with the treatment that she is receiving, but hope that we are able to go a little longer between checks now.
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9 years 5 months ago #54263 by Clareykc
Replied by Clareykc on topic Acute ITP - how long will doctors monitor?
Hello, we have a 2 year old boy who was diagnosed 3 weeks ago. We were told that here in the UK it is usual not to treat unless there is a serious bleed. He has had bloods taken 4 times since diagnosis and his levels have been 8, 7, 11 and (boo) 6 yesterday.
Having read the article Sandi posted about a study showing that IVIG can potentially prevent chronic ITP, I am wondering if non- treatment is a mistake? However, my son is HATING hospital and having bloods taken - so a non intervention approach is much better from that point of view!
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