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TOPIC: Una 10

Una 10 1 year 7 months ago #60224

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Hey ! We live in Sweden. My ten year old daughter has ITP since 6 months back. At the beginning she received nasal blood and was treated with IVIG several times and then cortisone without any progress. In her brother, her platelets were below 5. Right now they are at 8. The new doctor does not want to treat her at all because she has no bleeding. She also said if the platelets last for less than a year, my daughter will be treated with Revolade.
Now is my question coming? I asked the doctor if she will have a chronic illness? Then she replied that the disadvantage is that she is girl and an older child (10 years old) and the advantage is that she has so low platelets.
I wonder how could it be an advantage to have so low platelets? Can anyone answer me?

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Una 10 1 year 7 months ago #60227

  • Sandi
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I have no idea why the doctor may have said that. It's not an advantage to have low platelets.

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Una 10 1 year 7 months ago #60228

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Thanks for the reply!
He said that when platelets fall rapidly and under 10 then it is usually acute.
But I'm afraid that my daughter will be crowned

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Una 10 1 year 6 months ago #60295

  • juliannesmom
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Don't lose hope. Even if your daughter is deemed chronic, spontaneous remission can and does happen. My daughter was almost 13 when diagnosed. She was deemed chronic. (At that time, the label chronic was applied if it persisted six months. I think the criteria have changed now.) She had IVIG three times in a year. (And was hospitalized for IVIG side effects after the first time.) We also tried one decadron pulse but she did not tolerate the rapid drop in count after the pulse. She had prednisone once to raise the count for dental work and once for unrelated hives and not for ITP. No other treatments. About a year and a half in, her count started climbing to safer numbers and eventually to normal. By around two and a half years after diagnosis, she was in remission. She is now 23, in med school, with normal counts. She is a runner, and quite healthy. We know it could return, but we pray it never will. I pray your daughter soon enjoys a remission.
Norma
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Una 10 1 year 6 months ago #60296

  • Sandi
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Una - Chronic does not mean that she will have it for life. All it means is that it's lasted more than a year. As Norma said, remission can happen at any time. Just deal with it as it comes.
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Una 10 1 year 6 months ago #60297

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Thank you all !
My daughter is good and has no bleeding even though her platelets are 7. What do you think she should be treated or not. I think she is doing much better now than when she was treated with cortisone?

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Una 10 1 year 6 months ago #60298

  • Sandi
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The trend is to not treat children unless they have symptoms. If they can tolerate the low counts, it's better than the toxic drugs that can have long-term side effects.

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Una 10 1 year 6 months ago #60400

  • Rob16
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Una10,
Your doctor may be referring to this very recent research by some very fine scientists:

onlinelibrary.wiley.com/doi/10.1002/pbc.26736/full
Pediatric Blood & Cancer
Online Version of Record published before inclusion in an issue
RESEARCH ARTICLE
Predictors of remission in children with newly diagnosed immune thrombocytopenia: Data from the Intercontinental Cooperative ITP Study Group Registry II participants
Authors: Carolyn M. Bennett, Cindy Neunert, Rachael F. Grace, George Buchanan, Paul Imbach, Sara K. Vesely, Thomas Kuhne
First published: 9 August 2017 DOI: 10.1002/pbc.26736
Abstract
Background
Immune thrombocytopenia (ITP) during childhood spontaneously remits in up to 80% of children. Predictors of remission are not well understood.
Procedure
We analyzed data from Intercontinental Cooperative ITP Study Group (ICIS) Registry II, a large prospective cohort of children with ITP, to investigate factors that might predict remission.
Results
In ICIS Registry II, 705 patients had data collected through 12 months following diagnosis, with 383 patients having data available at 24 months as well. Younger age and pharmacologic treatment at diagnosis were significantly associated with disease resolution at 12 and 24 months (P < 0.0001 for both) as was bleeding at diagnosis (P < 0.0001 and P = 0.0213, respectively). Gender and platelet count at diagnosis were not significantly correlated with remission. In the multivariable analysis, remission at 12 months was associated with younger age, higher bleeding grade at diagnosis, and treatment with a combination of intravenous immunoglobulin (IVIG) and corticosteroids at diagnosis. Only younger age and treatment with IVIG and steroids in combination at diagnosis were associated with remission at 24 months. Patients <1 year of age had the highest odds of achieving remission at both 12 months (OR 4.7, 95% CI: 2.0–10.6) and 24 months (OR 7.0, 95% CI: 2.3–20.8).
Conclusions
Younger age, bleeding severity at diagnosis, and initial treatment with a combination of corticosteroids and IVIG are associated with remission at 12 months in the ICIS Registry II. Patients <1 year of age have the highest likelihood of remission. The relationship of bleeding and treatment at diagnosis requires further study to clarify whether these are independent predictors of remission.

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Una 10 1 year 6 months ago #60406

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Interesting. Doesn't this suggest 'watch and wait' is a bad idea for young children?
Sounds like 'younger children' means less than 1 year.

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Una 10 1 year 6 months ago #60414

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"The relationship of bleeding and treatment at diagnosis requires further study to clarify whether these are independent predictors of remission."

In other words, treatment at diagnosis may be a result of lower platelets at diagnosis, and the platelet count the determining factor of higher remission rate.

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Una 10 1 year 2 months ago #62246

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Update! Una is good and her platelets have risen to 15k without any treatment.

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Una 10 1 year 2 months ago #62248

  • Sandi
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That's a start. Sounds like she is doing well so far.

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Una 10 1 year 1 month ago #62447

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Una's platelets have risen to 27

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Una 10 11 months 3 weeks ago #63053

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Update! Una is good and her platelets have risen to 42 K.

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Una 10 11 months 3 weeks ago #63054

  • Sandi
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Great news! Thanks for the update!

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Una 10 10 months 2 weeks ago #63376

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Update! Unas platelets have risen to 59 K.

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Una 10 7 months 2 weeks ago #64087

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Una's mom - *Tack* for all these updates! So glad to hear a rising count. :)

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