Behavioral problems: Medication side effects, normal response to chronic illness, or both?
Written by, Kim Striegel-Schwartz, FNP
2005

Children and adolescents with a chronic illness like systemic scleroderma face a whole array of fears and emotions which may result in behavioral problems.  Confusion, anger, fear, depression, and frustration are all common reactions and should be expected.  However when the changes in behavior are dramatic, families are often concerned that the medications may be responsible.  A simple approach is to discontinue the medication and see if the child’s behavior improves.  However, with a potentially life-threatening illness such as systemic scleroderma this may not be feasible.  Many children are on multiple medications and it is most often impossible to stop them all to determine which one may be contributing to the issue.  However, some medications are well known to have behavioral side effects.  When these problems come up, there are some useful approaches for parents to take and coping mechanisms that can be used by the family as a whole.

Remember there are multiple diseases grouped together under the name scleroderma. Examples of focal forms are linear scleroderma and morphea.  Systemic forms include progressive systemic sclerosis (PSS) and CREST syndrome. Some of the medications are appropriate for one form and not another.  Also, proper treatment for these diseases remains controversial.  No one therapy has proven effective in every child. If you have questions regarding any of the medications discussed below, please discuss these with your physician or nurse practitioner. 

Behavioral problems associated with the medications used to treat scleroderma often do not result directly from the medication, but arise from side effects like bad taste, bad smell, having to get shots, or changes in appearance caused by the medication.  However, there were a few medications that may directly cause behavioral changes.  Corticosteroids, (e.g. oral Prednisone and/or IV Solumedrol) are the most common culprits.  Known side effects include depression, anxiety, insomnia, and restlessness.  Many patients describe vivid dreams and disturbed sleep after receiving IV Solumedrol.  In addition, corticosteroids in larger doses cause acne, excessive hair growth, weight gain, and a moon face.  These can have a drastic impact on the child’s self image with profound negative consequences.  Children and adolescents find it difficult enough dealing with the everyday issues.  The added stress of a chronic disease and medications which alter the child’s appearance must be expected to have an emotional impact.

Indomethacin (Indocin) isn’t often used in children with scleroderma, but may be used to help with joint pains.  Indocin is known to cause depression, anxiety, and behavioral disturbances in some children. Other nonsteroidal anti-inflammatory medications such as naproxen or ibuprofen only rarely are associated with behavioral changes.  However, some children seem more rambunctious than normal at bedtime when on one of the non-steroidal anti-inflammatories. If you feel your child is reacting poorly to one of the non-steroidal anti-inflammatories, simply switching him or her to another one may solve the problem.

Reglan (Metoclopramide) is sometimes used to help children with scleroderma move food through the digestive tract.  When it is first initiated, some people suffer from anxiety, pacing, restlessness, and insomnia as their body adjusts to the dosage.  In rare cases it may cause depression.

Behavioral problems because children do not like how medications make them feel are not a direct side effect of the medication, but rather secondary effects.  For example, Methotrexate is commonly used to treat scleroderma, but it may cause the child to feel ill and nauseated after taking it. Often it is given as an injection of yellow liquid once weekly or as yellow pills once weekly.  Refusal to take Methotrexate may result from fear of the injection and/or dislike of the nausea the child feels after taking the medication.  Some children have become so strongly conditioned by the association that they avoid everything yellow including yellow clothing and yellow foods.   Their brain associates the color yellow with not feeling well.

Plaquenil (Hydroxychloroquine sulfate) is a medication commonly used for children with scleroderma.  It has very few side effects but it does have a very unpleasant taste.  Cyclosporine is another drug that may be used for children with scleroderma.  It smells awful. With long term use it may cause increased growth of body hair.  Obviously this may be disturbing.

Even if a child is not getting side effects from the medications, behavioral problems often result from the need for frequent blood tests, doctor visits, hospitalizations, and other problems that cause school absence and disrupt the child’s normal activities.  These little problems all add up and begin to affect both the child and their parents.  Over the long term we often see children and their families develop “patient fatigue.”  Day after day of taking medications that may or may not seem to make them better, numerous doctor’s visits, blood work, tests or hospitalizations wear children and their families down. 

What can you do??

The most important thing to remember is that scared children do irresponsible things.  If you are scared your children will be too.  It can’t be completely avoided (who are we trying to fool??).  But it can be dealt with by open and honest discussion.  You may need the doctor or nurse practitioner to help. Even in the best of circumstances there is likely to be some “acting out.”  Many parents are unsure what to do.  If the child is acting out because of the disease or medicines, is it fair to punish them?  The clear answer is to forget ‘fair.’  Having the disease is not fair to you or your family.  If you would punish any of your other children for the behavior, then you have to punish the child with scleroderma for the same things in the same way.  Children who are allowed to “get away with it” because they have a disease do not turn out well.  They expect all of life to let them “get away with it” because of their disease and that is not the real world!!!  Forget the disease and punish your child the same way you would punish any other family member.

Having a chronic disease is scary, overwhelming, and frustrating for the affected child, but it is also scary, overwhelming, and frustrating for the parents.  Further it is important to recognize that children’s behavior mirrors the parent’s behavior.  If all the medicine, doctors’ visits, and lab tests are making you crazy your children will know it.  Whenever one family member is ill, the whole family is under stress.  Don’t ignore this.  Communication among family members is crucial to maintaining an emotionally healthy family.  Remember that time devoted to your child who is sick is time taken away from yourself, your spouse, and your other children.  The family needs to be able to talk about how this is affecting everyone’s life.  Don’t dwell on it.  Life goes on.  But, if siblings and/or spouses are ignored the whole family will suffer.  Balance your time so that every member of the family gets some special attention. When possible, do fun things as a family.  But don’t be afraid to send your other children someplace fun with your spouse while you manage the doctor’s visit.

If a child’s behavioral issues persist despite your best efforts and discussions with your doctor do not ignore the problem.  If it appears that a specific medication is causing the problem, speak with your doctor about alternatives.  If there is no alternative to a medication that is causing side effects tackle them head-on.  Anti-nausea medications can be prescribed with Methotrexate.  Medications like Plaquenil can be made into a liquid with the flavor of your choice by a compounding pharmacist.  EMLA cream can be used to dull the pain of an injection.  In small children, the injection can be given when they are asleep and most don’t even wake up. A fun day at the spa with your child can include waxing any unwanted hair. Positive reinforcement for taking their medications is crucial. Also, talk to your child about how they are feeling.  Find out exactly what they are thinking.

If necessary, get help.  There are excellent psychologists, psychiatrists, and social workers trained in dealing with children and adolescents with chronic disease.  Your doctor or nurse practitioner should be able to help you in this regard.  Be proactive and deal with behavioral issues before they spiral out of control.  Your family will be happier and healthier in the long run and able to deal more effectively with whatever comes your way in the future.

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.