Your child has been diagnosed with ITP and you have big questions, like “What Is ITP? "How do I make sure my child with ITP is safe but still able to be a kid?” With the right information and tools and a close connection with your doctor, it’s entirely possible.
But first, slow down for a second, breathe deeply through the racing thoughts and take it step-by-step. Realize that in the majority of cases, ITP in children lasts a few months. Also know that many parents have been in the same place as you and have learned how to help their children cope with ITP.
Start by learning the basics of ITP. The Platelet Disorder Support Association (PDSA) is one of the best resources for ITP information and support. Plus, we’re here to help. We have answers to some of your most pressing concerns as you set out on a new path to helping your child manage day-to-day life with ITP.
Chidren with ITP can still play and be active! Work with your doctor to come up with a plan for safe activities based on your child’s health condition and platelet count. Once you have a firm plan, discuss it with teachers and other parents. For example, you may want to develop a brief list of ITP guidelines (for example: no running indoors) and activities in which your child is encouraged to participate. Do the same at home, but make it a fun project you can do together. Let younger children help by making a list of art projects they can create. Set aside regular time each day to do activities from the list. Always provide softer play spaces, such as mats, for younger children. Consider padding furniture with sharp corners if you have a very young child with ITP.
These fears are common, especially with an illness like ITP. Medical professionals go hand-in-hand with drawing blood and giving injections. For some children, it can be a struggle just to get them to the appointment. Don’t worry, you can help your child through this by encouraging him to talk about his fears. Let children know it’s okay to feel this way. Ask the doctor or nurse to take a moment to listen to your child explain how he's feeling. Have your provider explain each step of the process to your child to take away some of the mystery. Also, ask the doctor or nurse to “practice” on you or himself or herself first. Allow your child to assist by putting on the tourniquet and rubbing alcohol on the vein.
Your comfort level will determine how much information you choose to disclose about your child’s ITP. Because people are naturally curious and want to help, it’s good to have “talking points.”
Stick to the basics. That’s all most people will retain. For example, tell acquaintances:
“My child has a bleeding disorder called ITP that causes her to bleed and bruise easily.”
“ITP is not cancer and it is not contagious.”
For teachers, school staff, parents and others who watch your child daily, consider saying the following:
“My child has a bleeding disorder called ITP that causes him to bleed and bruise easily. He will feel okay most of the time, but the medicine can make him feel hungry, tired and irritable.”
“He needs to avoid injury. Here is a list of physical activities my child can participate in. Please check with me first before letting my child participate in any others.”
“This is how to stop bleeding should anything happen. Call 911 if he hits his head or is in a serious accident.”
Keep it simple when communicating to your child’s classmates and friends:
“Mary has ITP. It’s an illness that can cause her to bleed or get bruises sometimes.”
“It isn’t something other people can catch and it’s not cancer.”
“She can still play and have fun, but she may not be able to do every activity.”
The PDSA offers many levels of support, including 31 regional ITP groups, online discussion groups and two Facebook groups. Or, consider joining the association’s bimonthly teleconference for parents of children with ITP.