PI Panel
Therapeutic Play

From my experience, withholding important information from children can be extremely stressful. Children can handle more information than adults often give them the credit for. They are curious and if caregivers do not give them the information, the children will seek it out or make the information up in their own minds. This can be more stressful because it can create misconceptions and can lead to a mistrusting relationship and fear.

Children will know, or eventually learn, that treatment is not “normal” and may think that there is something wrong with them. Children may also think that they have been bad or are being punished. It is important that children know that the diagnosis is not their fault and that they are not “bad” and have not done anything wrong.

Often a diagnosis is more stressful to parents because they have experience with the words associated with an illness. For instance, adults will have a lot more experience with the word ”cancer“ and will have stories in their minds of what being diagnosed with “cancer” means. The word “cancer” has a different meaning to a child who does not have that experience. This is where caregivers have the ability to explain the diagnosis in very simple terms so the child affected is not afraid. It is in everyone’s best interest for caregivers to talk openly and honestly and explain the diagnosis in developmentally appropriate ways. If a caregiver is not comfortable or does not know how to explain a diagnosis to a child, they can consult a medical professional for help.

Most Certified Child Life Specialists belong to the professional organization known as the Child Life Council The site alone may not be of help to you, due to the fact that you need to be a member to obtain directories of Child Life Specialists, but you may contact them directly and ask where the closest Child Life Specialist is to your infusion center. You could also look for the closest pediatric hospital to your infusion center, then call and ask if they have a child life specialist on staff.

I would validate her feelings and make sure she understands why this is happening. Focus on what can be done instead of what can not be done. Also, try to find ways to work treatments around "things" and find ways to make up for "things" missed due to illness.

I would give him as much information as I think he could handle. Younger children do not need in-depth information, just the basics about what will happen and why. As children get older and possibly more used to the procedure (if it is ongoing) they may need more information to better understand why. As they reach school age and need to tell people about their treatments, it is best if they have the words to do so.

Some children will have a difficult time deciding to tell friends. If a child is young and not asking many questions, I might think that they do not have the correct words to ask. But if the child is older, I would be concerned that they are attempting to ignore the situation. This could lead to issues later on.

I do suggest that any questions asked are answered openly, honestly, and accurately. If your child is not asking you questions, maybe you can ask him what he thinks will happen and why to gain an understanding of what he does know and make sure he has accurate information.

Yes, however, parents need to be strong if the infusions are a must. Parents will need to create strategies for infusion day. It will also help to discuss why the child needs infusions.

First, I would look at why your child does not want to go. Is it the IV start? Does it hurt? Look at ways to cope with the IV starts such as talking with the doctors and nurses or possibly use numbing cream.

In addition, consider a coping technique such as guided imagery. Ask your child to close her eyes and walk her through her favorite place by describing sights, sounds, smells and what is going on. A child could also simply close their eyes and count to 50 or growl like a lion.

It is often a good idea to tell children what they can and can’t do. For example, "You can cry, you can watch television, but you can not move. Your job is to keep your arm as still as you can." Find something that works and possibly make a behavior modification chart (if age appropriate) or another type of reward system. Rewards are up to the parents and can range from something as simple as picking out what to have for dinner to a trip to a toy store.

Yes, therapeutic play can definitely be used with siblings. It can be used to explain what is happening to the sibling and why. In addition, it can be used to gain an understanding of how the sibling is coping and identify any sibling issues that may arise. Often siblings can feel left out or feel like they do not receive the same amount of attention.

A child life specialist can help your child develop their own coping techniques or strategies to help him understand the procedures that he will have to go through. A child life specialist can do this through therapeutic play and by asking age appropriate questions. Child life specialists are found at most major pediatric medical facilities. You can call your facility and ask for the child life department. If your facility does not have one, I'd suggest visiting childlife.org to see if there are any resources available in your area. In addition, feel free to order the Therapeutic Play Kit, developed by myself, a family living with PI and Baxter. It's full of great resources and information to get you started! Best of luck to your family.

First, I would want to know from your daughter's point of view if she understands why she needs the medicine/IVIG, so I'd ask her an open ended question such as "Why do you think you get IVIG?" I'd want to really listen to her answers. I'd be listening to see that she really understands and I would want to hear any misconceptions she might have. It's a common misconception for children to think that they did something wrong and that's why they get medicine. Children can revert to that thinking even after years of being totally medically compliant. If she has a good understanding of why she gets the medicine and what the benefits of getting it are, such as being able to go to school, have play dates, go to public places, then I'd move to the next step.

I would be interested in looking at your daughter's recent history. For example, I'd be looking for recent distress such as a hospitalization, a change in routine such as a change of regular nurses or going to a new clinic, a problem getting an IV, or stress in the household. Often times outside influences can lead to regression. If there had been a recent distress, I would validate the feelings of the recent trauma, but I'd help your daughter to understand that the medicine is still necessary, and I'd try to involve her in finding a solution. Usually this can be accomplished through therapeutic play.

I would suggest you order the Therapeutic Play Kit and begin therapeutic play, even if you've already been doing it, because this might prompt new interest and new ideas. Other techniques might include a behavior modification chart or reward system and lots of positive reinforcement. Even when your daughter fights the process, try to find one thing she did well, for instance, “I saw that you worked hard to hold really still today” even if she did so while crying. Don't be afraid to set limits, but phrase them in the positive – tell your daughter what she can do before telling her what she can't do, for instance, "It's okay to cry, but you can't kick your legs at the nurses."

Good luck, and please don't hesitate to follow up.