Pediatric Vasculitis
Coping with Medications
Your medical team, including child life, will be able to help guide you through difficulties which you may encounter when taking medications. Be sure to reach out for them for guidance and support if you are having any problems with this essential aspect of your medical care.
Ways to cope
As a child or teen living with vasculitis, you likely will be prescribed medication to manage your disease. Some of the medications used to treat vasculitis may have unpleasant side effects. For example, corticosteroids may be associated with unwanted changes in your appearance and mood. It is important to acknowledge how you feel about taking your medication and remember that it is normal to experience negative feelings when you are dealing with challenging side effects. Keep in mind, the importance of taking your medication as your doctor recommended and also the reason that you are taking your medication (to slow or stop your disease and get back to doing the things you love most). As a parent to a child taking medication, you can support your child by validating their feelings and maintaining expectations for medication adherence.
Some medications for vasculitis are taken by mouth and need to be swallowed. This can be a challenge if you have never swallowed a pill before or if you are not used to swallowing pills. When learning how to swallow pills, your parent may break the task down into smaller goals, working toward the larger goal of taking the medicine. You should be proud of every step of progress that you achieve toward the goal of swallowing pills. It is often recommended that your parent have you first start with a sip of water and then start to swallow candies of different sizes, increasing the size from very small to larger. For example, start out with smaller candy, such as sprinkles, Nerds®, and mini M&M’s®, and work towards larger candy like regular M&M’s® or Good “N Plenty.® Be proud of each step that you take toward pill-swallowing. Until you are able to swallow all the necessary pills, your parents may decide to put the pill (usually crushed) in a spoonful of pudding, ice cream or peanut butter; or they may cover the pill in a sticky, enjoyable treat such as Fruit Roll-Ups® or Airheads.® Remember, practice is key for pill-swallowing. You will become more skilled and self-confident the more you do it!
Some medications require a needle poke. When receiving an injection, relaxing your body and distracting your mind can help you to calm down your stress level and decrease the discomfort you may feel. You can try taking deep belly breaths, in through your nose and out through your mouth, while inflating your belly with air. Other relaxing activities include: tensing up different muscle groups in your body and relaxing them, or thinking of the place that you want to be. Watching your favorite show or video, or listening to music, can be a great distraction. Even blowing bubbles can distract your mind and relax your body at the same time.
The things we say to ourselves matter too! Remember to stay positive in the way you think about your injections with thoughts like “I can do this” or “I’m an expert with shots now,” as this will make the experience easier and reduce pain. Sometimes, you may want to put off your injection or ask your parents to do it later, but this will likely make it more difficult for you to cope. Instead, we recommend setting a plan to receive your injection, including a specific day and time to take it and things you can do to help you through it, and sticking to the plan. Receiving special treats or rewards after taking your medication can be motivating and help you stay on track with the plan!
It will be most helpful for you to stay calm, demonstrate confidence in your child’s ability to cope, promote use of positive coping strategies, and praise your child’s successes. If your child experiences needle fears or has trouble complying with pokes, you can use a comfort hold to help them feel secure and stay safe during the procedure. The nurse on your rheumatology team may be very helpful in reviewing the technique of giving the injection, increasing your confidence, and also can provide some tips for calming your child. For those children who are very fearful of needles, it may be helpful to gradually face the fear of needles by looking at needle pictures or videos of other children getting pokes, giving a practice injection, and then, progressing towards receiving the injection. If these tips do not provide enough relief, your child may benefit from consulting with a psychologist or counselor.
Your medical team, including child life, will be able to help guide you through difficulties which you may encounter when taking medications. Be sure to reach out for them for guidance and support if you are having any problems with this essential aspect of your medical care.