A diagnosis of ITP is scary for anyone, but especially for a kid and his or her parent. Days filled with fun and endless activity now have to include doctor’s appointments and needle sticks to monitor platelet levels. The new reality is one focused on preventing worrisome complications caused by this autoimmune disease, including common spontaneous bruising and bleeding from the mouth and nose, and rare, but possibly life threatening bleeds. Fortunately, most kids with ITP usually recover more quickly than adults with ITP.
How many kids are affected?
ITP affects at least 3,000 children under the age of 16 each year in the United States, with most being age two to six years when diagnosed.
What are the symptoms of ITP?
Kids with ITP share the same symptoms that affect adults. ITP can cause bruises and/or small purple or red spots on the skin (petechiae), in addition to nosebleeds, bleeding gums and blood in the urine or stools.
Another possible complication is bleeding in the brain. While rare, such life threatening bleeding most often occurs in children with ITP within the first 12 months following diagnosis.
Like any other medical condition, ongoing communication with your child’s doctor about their status is the key to help assure a successful outcome.
The Phases of ITP
Newly diagnosed ITP: within 3 months from diagnosis
Persistent ITP: 3 to 12 months from diagnosis. During this phase, patients have not reached spontaneous remission or maintained a complete response off therapy
Chronic ITP: lasting for more than 12 months
Severe ITP: presence of bleeding symptoms that need treatment or need an increase from prior treatment
Refractory ITP: does not respond or is resistant to attempted forms of treatment
How did my child get ITP?
Doctors don’t know what causes ITP, but it often occurs in otherwise healthy children a few days or weeks after a minor viral infection. There is also evidence that the measles-mumps-rubella (MMR) vaccine may very rarely trigger ITP. Why ITP happens in some children but not others who have had the same viral infection or vaccine is not known.
How will my child’s ITP be treated?
Because ITP in kids generally resolves on its own, your child’s doctor (usually a pediatrician or family physician) , often following consultation with a hematologist, may not recommend any treatment other than a weekly or bi-weekly blood test to monitor their platelet level. If drug treatment is recommended to increase the platelet count and reduce or stop bleeding, there are a wide variety of options your doctor may use to raise the platelet count until your child recovers on his or her own.
In addition to learning more about ITP management and the various drug treatments that are available, you can gain important guidance on health insurance and assistance programs for ITP patients in the United States and drug coverage information for those living in Canada.
Will my child recover?
Most kids (between 80 to 90 percent) with newly diagnosed ITP suddenly develop bleeding signs and symptoms that fortunately disappear within a few weeks or several months. Recovery from ITP may occur within a few months, whether they initially required drug treatment or not.
ITP in adolescents is often similar to ITP in adults in that the bleeding is often more persistent (lasting over three months), or even chronic (lasting more than a year) and requires drug treatment to control its symptoms. Fortunately, full recovery is often possible if your child is diagnosed with persistent or chronic ITP.
Is ITP dangerous for my child?
It can be, but the danger is primarily related to your child’s platelet count. For example, a platelet count of less than 50,000 may cause your child to bleed or bruise easily , whereas a platelet count lower than 10,000 often will increase the risk of serious bleeding. Learn more about the importance of monitoring your child’s blood platelet level.
Can my child continue to play sports?
A kid’s world of sports is an important part of their life and having ITP should interfere as little as possible. But, it’s important for your child to “play smart” by wearing helmets, elbow pads, wrist guards and kneepads or any other protective equipment that is recommended to try to avoid injury. While each child is different, children at increased risk of bleeding should limit some activities and sports. Talk to your doctor about recommendations for your child. By becoming familiar with the full list of sports your child can play or should avoid based on their platelet count can help assure that they have fun while being safe.
At PDSA, we know that strong social and emotional support is a powerful tool for those living with ITP. We’re dedicated to providing resources to educate and empower you, ease your anxiety and boost your overall health.
- Student Fact Sheet
- When A Child Has ITP
- ITP in Children
- ITP in Adolescents
- ITP in Teens
- Discussion Forum
- Parents Support Group
- Local Support Groups
- PDSA Facebook Page
- PDSA Facebook Group
- Understanding ITP: A Story for Kids about Immune Thrombocytopenia (ITP)
- ITP Poke-R Club
- Parents Teleconference Group
Kids join in the first 30 minutes to talk with each other about life with ITP
There are many treatment options to control the symptoms and complications of ITP — and many more are being developed. The key to getting the best results is working closely with your child’s doctor to find the treatment that works best for you with the least possible side effects.
First Line: (first therapies given to treat a disease)
- Corticosteroids (steroids) – (prednisone, dexamethasone)
- Intravenous Immunoglobulin (IVIG)
- Watchful Waiting: More of a strategy than a treatment, ‘Watchful Waiting’ means choosing to live with your child's current platelet counts while carefully monitoring the disease and treatment options.
- Anti-Rho(D) - (WinRho ®)
Second-Line: (therapies given when first-line doesn’t work, or stops working)
Register to Elevate Research for Answers
Learning more about PDSA’s ITP Natural History Study Registry is an important first step in helping advance ITP research. The next best step? Enrolling in PDSA’s national patient registry to advance the science needed to improve the quality of life for ITP patients.