A definition of Juvenile Scleroderma in simple, easy to understand language

Getting Your Child to Take Their Medication
Written by Thomas J.A. Lehman, M.D.
Chief, Pediatric Rheumatologist
New York, NY
Vanessa Malcarne, Ph.D
Associate Professor, Department of Psychology
San Diego, CA

Getting children to take their medication is always a hassle. It’s hard enough to get them to clean their room or take out the garbage. Any routine chore is no fun. Taking your medicine is just another chore from the point of the children. Worse than that, some of the medicines give them upset stomachs and other problems. No wonder they often ‘forget’ or even outright refuse.

There is no uniform agreement about the best way to treat scleroderma. When you read the following sections you will have to remember that there are different types of scleroderma for which different medications are used. In addition different doctors have different opinions about which medications are best, and which should be used when.

For focal scleroderma (morphea or linear scleroderma) there are a variety of choices:

D-penicillamine used to be the drug of choice, but most physicians now agree it is not very effective. For mild cases some physicians like to use hydroxychloroquine (plaquenil). This medicine is generally safe and seems to be effective over long periods of time. Don’t forget that children taking this medication are required to have check-ups by the ophthalmologist (eye specialist) every six months because of rare eye toxicity). An important thing to remember about hydroxychloroquine is that it is famous for tasting awful. The newer versions are coated to reduce the bad taste. If your child is resisting taking the medication it may be worth asking for the brand name plaquenil. It might cost you more, but how much is the time and aggravation worth?

There is no simple solution for children who are too small to take the whole pill. The taste cannot be easily hidden if you break the medication up. It’s probably best to divide the pill as carefully as possible and have the child swallow the half pill quickly if possible. If that doesn’t work because they won’t swallow pills, you can try hiding it under peanut butter, ice cream, or even inside a sliced open gummie bear like candy.

For more severe scleroderma it may be necessary to add methotrexate. Although methotrexate has a long list of potential side effects, it’s usually safe and actually fairly easy to give. For one thing methotrexate only has to be taken once each week. The pills are small and yellow and easily crushed. If necessary some doctors even recommend drinking the liquid version of the medication, which is intended for shots. In higher doses methotrexate has a lower risk of side effects if it is given in shots. [Note: to reduce the incidence of side effects all children receiving methotrexate should be given folic acid. This can be included in a multivitamin or supplied as an extra pill each day. It usually comes as a small pill and is not a problem for children to take.] If a child complains about the taste of methotrexate it can be ‘hidden’ using any of the techniques described for plaquenil.

The major problem with methotrexate is that the dosage required to improve the scleroderma is sufficient to make most children feel ‘queasy’ the next day. This doesn’t happen because the medicine is directly upsetting the stomach. It even happens if you get the methotrexate as a shot. It’s a direct effect of the drug on centers in the brain. This can be a problem over time. It can become such a strong reflexive reaction that I’ve had several children who stopped wearing yellow clothes and wouldn’t eat yellow mustard. They developed a very strong dislike for anything colored yellow.

There is no easy solution to the nausea. Some children do better if they are given drugs used to reduce the nausea associated with chemotherapy (e.g. ondansetron (zofran) or granisetron (kytril). These are expensive and imperfect, but some children and parents feel they make a big difference.

There is no uniformly effective advice for parents if the situation is starting to get out of hand. The drugs really do make the children feel sick. If they are small and they won’t take the pill you can be sure the injection gets in. Logic may help with older children. Sometimes the children are too big to force and psychological counseling is necessary. It is important to remember that the therapy may be required for several years. A careful, reasoned, and understanding approach right from the start generally works better, but I do not have a system that always works.

It is rare that any other drugs are prescribed for children with focal scleroderma. For children with systemic sclerosis ( PSS or CREST) there are two additional drugs that are widely used. Some physicians use cyclosporine A. This drug comes as a liquid or capsules and may be very helpful. The capsules are large so many children prefer to stay with the liquid. The liquid is fairly easy to take (though some children complain it ‘smells bad’). There are no real tricks to getting them to take the cyclosporine. Parents must remember that it has to be given using the special measuring supplies provided. If you put cyclosporine liquid in a glass the cyclosporine will all stick to the glass itself and the child won’t get the medication. You also can’t give grapefruit juice to someone on cyclosporine – there’s a chemical in grapefruits that blocks its effects.

Intravenous cyclophosphamide is used for children with severe systemic scleroderma. This drug may be very effective. It’s given intravenously, causes hair loss, make you nauseated, and requires frequent trips to the hospital for tests and injections. This is essentially chemotherapy as if the child had cancer, and is only given to children with very severe disease.

It can help to make the child a ‘partner’ in their own care. Review their medications with them, making sure that they understand when they need to take what medications, and perhaps more importantly, why. You can ask the pediatrician or treating physician to do the same thing. It’s easier if we understand with the trade-off is. You may discover that your child has misconceptions or erroneous beliefs about their medication, or their disease. You and your physician can help to correct these.

Don’t scare your child with horror stories about what happens to children who don’t take their medications. This can backfire, and children don’t really believe awful things will happen to them anyway. Instead, explain what good the medications do and what the benefits will be. Try to give these explanations in language appropriate to your child’s age. Remember that younger children don’t understand medical terms, and can’t think about things in terms of outcomes that are far in the future. Talk simply, ask the child to explain things back to you so you can be sure they understood, and talk about today and tomorrow rather than next year or ‘when you are older.’ Even with adolescents, it’s best to focus on immediate benefits, rather than long-term outcomes. Adolescence is a time period when it is developmentally normal and appropriate to believe that you are invulnerable, and so threats about long-term consequences of not taking medications fall on deaf ears. Your child isn’t trying to be difficult or deliberately misunderstand you; it’s just that you’re telling them things don’t ring true to them.

Over the years I’ve seen parents use many different tricks to get children to take their medication. Hiding it in soft candies, mixing it with peanut butter, crushing it in applesauce… All of these things may help. However, they sometimes fail. With medications like methotrexate shots or intravenous cyclophosphamide there is no way to hide their effects. Gentle reassurance works for some older children. A reward system seems to work at virtually every age if you can make the rewards attractive enough. Rewards should be desirable and immediate. For small children it can be stickers or candy or… For older children it can get expensive. On the other hand how much will psychotherapy for the child (and you!) cost? And don’t forget to use praise, and expressions of love and support, which can and should be given in abundance, and don’t cost a thing.

For older children, contracts sometimes work. You can write a written contract with your child about when medications need to be taken, and what will be the rewards that will follow. Although long-term rewards should not take the place of more immediate rewards, older children respond well to the opportunity to earn points or money towards a larger reward: perhaps a desired videogame player, a bicycle or other sports equipment, or an item for collection. The older child, the longer the ‘points-earning’ period can be. Some parents have successfully used quite complicated rewards systems. One approach that seems to work well is to require that portion (maybe half) of the points earned for taking medications are cashed in for small reward every week, with some saved for a long-term, larger goal. That way the child gets a more short-term reward as well as ultimately receiving something highly desirable – and it can make the system more affordable for parents as well.

Sometimes it helps to pair something desirable with the medications. For example, imagine a child has to have an injection each week that he hates. Immediately after the injection, do something fun – something your child really likes – and make this a regular practice. This can be as simple as going to the park, renting a video, or having a favorite snack. This provides a reward for the child, but also means that ‘medication time’ gets associated with ‘fun time,’ and that can help to lessen avoidance of refusal behavior.

Surprisingly some parents ‘give up.’ It’s a natural response to get frustrated, but all the medicine in the world won’t help a child if they don’t actually take it. Would you give up and let your child ride in the car without wearing fastening the seatbelt? I hope not. We motivate and lead our children by example, persistence, insistence, and sensible compromise – including bribery. Don’t be afraid to use all these techniques.

Ultimately, the bottom line is that the best way to assure that your child takes necessary medication for scleroderma is you, the parent, to make sure that he or she takes it! Years of research on getting children and adolescents (for example, diabetics) to manage their own often complicated and usually aversive medication needs show that they do no do this very well at all, and often there are long-term negative consequences for their health. You need to do whatever is necessary to make sure that your child takes his or her medications, and that the doctor’s recommendations are followed to the letter. Don’t hesitate to ask your physician for help, or request a referral to a specialist in behavioral medicine (often a psychologist, nurse, or child life specialist) for help.

*Parent tip – if your child has nausea or other side effects from the methotrexate, give the methotrexate on a Friday night before their bedtime. This way they can hopefully sleep through the side effects and if it carries on to the next day they have the whole weekend to feel better without missing school time. ~ Kathy

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)
24 Hour Support Line: 1-866-338-5892 (toll-free)

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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