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