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Chronic ITP preschool girl 6 years 9 months ago #54870

  • rgstowell
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My daughter was diagnosed with ITP at 2, she is now 4. Her platelet count usually ranges between 8 and 12 with 3 being the lowest and 32 the highest without treatment and 176 the day after IVIG. We have doctors visits monthly to quarterly. The first year and a half was wait and see with just severe bruising and pettechia, until a noise bleed put her in the hospital needing a small transfusion and IVIG which lasted about a month. After that we tried Rutuxin to be safe hoping it would last awhile. They added steroids because of anaphylactic side effects, and stopped the treatment on 3rd week due to more severe anaphylactic side effects. The Rutuxin never appeared to work and counts were between 3-6 during the treatment and 10-12 a month and 2 months after treatment. The treatments have made her weary of doctors and she cries when she knows she needs to get tested. She seems to fatigue and get moody for peroids ,(which may just be a typical preschooler.) As well as go through periods of frequent urination. Aside she lives a happy healthy normal active life.
My questions concerns are:
How young are children typically who are diagnosed with chronic Itp?
What is the normal platelet range for children with chronic itp?
What are the risk/benefits of wait and see in an active child vs putting her through treatments that may fail?
Should I get a second treatment at a more renown hospital like Boston or Philadelphia?
Could it possibly be anything else?

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Chronic ITP preschool girl 6 years 9 months ago #54871

  • 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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Hi. I'll try to answer your questions.

How young are children typically who are diagnosed with chronic Itp?
There is no real answer to that. A child of any age can be diagnosed with chronic ITP. All 'chronic' means is that the child has had ITP for more than 12 months. It does not mean that ITP will last a lifetime. Many children and adults go into remission, sometimes with no treatment.

What is the normal platelet range for children with chronic itp?
There is no normal platelet range for children with chronic ITP. Counts can range anywhere from 0 to 100k.

What are the risk/benefits of wait and see in an active child vs putting her through treatments that may fail?
There have been recent studies that state that children who do not treat seem to remit at the same rate as children who do treat. The risk of not treating is obviously bleeding, and the benefit is no short-term or long-term side effects. The risk of treating is short-term and long-term side effects and the benefit is possible higher counts.

Should I get a second treatment at a more renown hospital like Boston or Philadelphia?
A second treatment? Did you mean a second opinion?

Could it possibly be anything else?
It's possible, but unlikely. I've been here since 1998 and have seen many children come and go. Only one ended up being diagnosed with aplastic anemia, and she was diagnosed just a few weeks after the ITP appeared. If your daughter has had this for two years and nothing else has shown up as far as symptoms or abnormal labs, at this point she has ITP.

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Chronic ITP preschool girl 6 years 8 months ago #54956

  • Cdreyes
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Hi, just to add to rgstowell's questions.
1. Does this mean that children with ITP will have bruises, small red dots and bleeding on nose and gums while their platelet count is not normal or when they are still with ITP?
2. When can we say that the child is already in remission?

Thank you so much.

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