Taking Control

Helping Children Follow Their Medical Treatment Program:
Guidelines for Parents of Children with Rheumatic Diseases

Adapted and published with permission from Michael A. Rapoff, PhD of the University of Kansas Medical Center, author of "Helping Children Follow their Medical Treatment Program: Guidelines for Parents of Children with Rheumatic Diseases"

Minimizing Negative Side-Effects

Some children fail to do what’s prescribed because it causes some problems or is uncomfortable. Range-of-motion exercises can be painful at times and some medications cause stomach pain.

It’s important to reduce these negative side-effects as much as possible if your child is to be consistent in following her treatment program. For example, warming the joints before exercising, by wrapping them or soaking them in warm water, can make exercising less painful. To minimize stomach irritation, you may ask your doctor about the use of antacids (Maalox, etc.) or anti-inflammatory medications that contain antacids.

Monitoring Adherence and Disease Symptoms

When your child has a chronic disease, it is important to monitor their adherence to treatment and their disease symptoms. This does not mean that you should "spy on" or badger your child! However, even with older children, it is important to monitor their progress.

One way to monitor adherence is to use a regimen record form. This form can be posted on the refrigerator. Each time your child takes medicine, does exercise, etc. it can be “checked off”. This is also a good way to remind kids and monitor other “fun” activities such as cleaning their room!

Your child’s disease symptoms can also be monitored on a daily basis. In our clinic we have developed two symptom rating forms; one for patients with juvenile rheumatoid arthritis (JRA) and one for patients with systemic lupus erythematosus (SLE) or dermatomyositis (DM). Parents (and other patients) can use these to monitor their disease. By also monitoring adherence, one can see how consistent compliance with prescribed treatments can lead to improvements in symptoms

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