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?
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.
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?
Your doctor may be referring to this very recent research by some very fine scientists:
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.
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org