•control muscle inflammation and damage
•maintain and improve muscle strength and function
•relieve pain
•control or prevent other symptoms
•help child and family learn to live with the illness.
To reach these goals, treatment usually includes:

•medication
•exercise
•a balanced diet
•education
As your child's symptoms change, the treatment plan may also be changed.

Medication There are several medications your doctor may use to treat JDMS. The specific drug or combination of drugs your doctor uses depends on the type and severity of your child's symptoms. Since only common side effects of each drug are listed here, you should discuss your child's medications with the doctor.

Prednisone (also known as: steroid, corticosteroid, cortisone, solumedrol, prednisolone)

Prednisone is by far the most common and most important of the medications used in autoimmune diseases. It works quickly to slow down the immune system and help control inflammation in the muscles and joints. This drug is similar to cortisone, a natural body hormone. When children take this medicine, their body stops producing the natural hormone and your child becomes dependent on the medication and cannot simply stop it. In order to allow the body to resume production of the natural hormone, your doctor will slowly lower the medication so the body can gradually make it again.
Steroids can be given as pills, or as a large intravenous infusion weekly, or both. Some pediatric rheumatologists prefer to give a large dose intravenously initially and repeat this dose several times while giving a lower daily dose. Other doctors give only pills, while another one may advise both. No matter how it is administered, steroid is very successful in controlling your child's inflammation.

Prednisone is used to:

•relieve muscle and joint pain
•improve muscle strength
•control fever
•control skin rash
Dose: At first, high doses of this drug are given until your child's muscle enzyme tests and strength improve. As your child gets better, the dose will gradually be lowered.

Common side effects: The side effects your child may have depend on how much medicine the child takes, and how long she has taken it. Common side effects include:

•increased appetite
•weight gain
•stretch marks on the skin
•round, full cheeks
•high blood pressure
•mood changes

Over a long period of time, the drug can also cause these problems:

•weak or damaged bones
•small cataracts
•slowed growth rate
•greater chance of developing diabetes, if it runs in the family.
Prednisone may cause other side effects, depending on the dose and length of time your child takes it. Discuss the side effects with your child's doctor. This drug is given because the benefits of controlling the JDMS outweigh the risks of side effects. The doctor will try to lower the dose as soon as possible to lessen the side effects, while keeping the disease under control.

A word about relapses: as the prednisone dose is lowered, your child's earlier symptoms of JDMS may return. This is called a relapse. These symptoms will usually go away with a mild increase of prednisone or by introducing another medication to be used with prednisone. Although some children may have more than one relapse, a relapse may not necessarily slow your child's recovery from JDMS.

Immunosuppressive Drugs

If prednisone alone can't control your child's illness, a stronger drug such as methotrexate is often used. This drug also slows down the body's immune system but it works completely differently from prednisone and has a different set of potential side effects.

Dose: The doctor will use as low a dose as possible and will usually use it in combination with prednisone. Methotrexate can be given as a pill or by injection; most doctors will recommend injection because the GI tract may be inflamed and prevent pills from being absorbed completely. Methotrexate is given once per week, while prednisone is taken daily. As your child gets better, the doctor will slowly reduce the dose of one or both of the drugs,usually one drug at a time.

Common side effects: Because these drugs add more potential side effects, they are used only if other medicines have not controlled the disease well enough. Talk to your doctor to decide whether the benefits of the drug outweigh the risk of its side effects.

Side effects may include:

•increased risk for serious infections
•nausea and vomiting
•diarrhea
•mouth sores
•skin rash
•damage to some internal organs, such as the liver
•decreased number of blood cells

These side effects will go away when the dose is lowered or stopped completely.

These drugs may cause other, more serious side effects. If your child is taking any of these drugs, the doctor will take regular blood and urine tests to monitor the drug's effect on your child.

Hydroxychloroquine (Plaquenil)

Hydroxychloroquine (hi-DROCKS-ee-CLOR-o-kwine) is a drug sometimes used to treat a severe rash in JDMS. The brand name of this drug is Plaquenil (PLA-kweh-nill).

Dose: This drug is given as a pill. Since it simply controls the rash, your child will also take other medicines for other symptoms.

Common side effects: there are no common side effects but rarely there may be:

•upset stomach
•eye problems
After a long time, Plaquenil may interfere with color vision. That is why an ophthalmologist (eye doctor who is an MD) should check your child's eyes every six months while your child is taking Plaquenil. If eye problems are detected early, they should go away when the medicine is stopped.

Cyclosporine (neoral)

If methotrexate and prednisone don't fully control your child's DMS, your doctor will probably advise cyclosporine (CSA). This is another immunosuppressive drug developed for organ transplantation. It helps control DMS especially in combination with Methotrexate. These two agents together often allow the prednisone to be tapered away.

CSA may cause:

•extra hair growth on face and arms
•thickening and swelling of gums
•kidney problems including high blood pressure
CSA is reserved for children with severe DMS and should be administered only by an expert in DMS, namely, the Pediatric rheumatologist. Both, blood and urine must be monitored monthly.

Exercise

Exercise is a very important part of JDMS treatment: in fact, it is nearly as important as medication. The purpose of regular exercise is to:

•keep muscles as strong and flexible as possible
•keep joints flexible
A physical therapist, who is part of your child's treatment team, will teach your child exercises to do at home. These exercises will be designed specifically for your child and will change depending on the activity of the disease. At first, your child's muscles may be weak and she may need help with the exercises. Later on, when your child won't need as much help, the exercises will be changed.

Exercises usually take about one hour per day. It is important for your child to do the exercises regularly, but not to overwork and tire her muscles. The therapist will try to combine some exercises with your child's normal play activity.

A Balanced Diet

Although there is no diet that will cure JDMS, it is important for your child to eat a regular, balanced diet. Protein in your child's diet is important for normal growth and to repair damaged muscles because muscle is made of protein. Calcium is important for strong bones. However, because prednisone is used to treat your child, the diet must be low in salt and in sugar. Once, your child regains her strength, her diet should be low in fat and overall calories but it must stay balanced. If your child does not feel well and does not want to eat, try to keep her interested in foods by letting her help prepare meals, and by preparing many different foods. Meals prepared at home are much healthier than anything you buy ready made. Specifically, fast foods should be discouraged and meals out need to become special treats. A nutritionist can help plan a good diet for your child.

Education

Your doctor, nurse and other health care workers can help teach you about JDMS. By learning about the illness and how to treat it, both you and your child will be able to take better care of the disease, answer people's questions and feel in more control over your lives.

Who Should Treat My Child?

Your child's regular doctor is the best person to see when your child first becomes ill. But, because JDMS is hard to diagnose and treat, the primary doctor will send your child to a specialist such as the Pediatric rheumatologist, a doctor who specializes in childhood rheumatic diseases. Pediatric Rheumatologists are Pediatricians who spent an extra three years training in the area of Rheumatology and have taken examinations which certify that he or she are the expert in the recognition and treatment of chronic autoimmune conditions of children. No other physician has the experience to safely treat your child and the national Academy of Pediatrics recognizes this. If there is no pediatric rheumatologist in your area, your doctor may refer you to another specialist who is knowledgeable about JDMS. However, it is very important to have your child evaluated by a pediatric rheumatologist, even a one time consultation is worth the required time and travel.

The Health Care Team

Several other health professionals may be involved in your child's treatment program:

Remember: your child may not need to see all of these persons, and may need to see others only a few times.

•nurse - teaches your child about JDMS and how to take care of it. This includes teaching pain control and play therapy to help the child deal with the illness.
•physical therapist - tests muscle strength and designs exercises which strengthen large muscles (such as the arms and legs) and keep joints flexible. A physical therapist can also help your child regain lost coordination and movement.
•occupational therapist - teaches new ways to do daily activities such as eating, combing hair, and dressing, which may be more difficult for a child with JDMS. These activities strengthen smaller muscles (such as those in the hand) and help the child feel more independent.
•social worker - helps with the personal, emotional, family, or financial problems that may occur with JDMS.
Other persons such as a nutritionist, pharmacist, psychiatrist, or psychologist, can help you handle special problems.

Finding Medical Care

To find out about these health professionals in your area, contact any of these organizations:

•your local Arthritis Foundation chapter
•a local children's hospital or medical center
•your county medical society

NOTE: Juvenile dermatomyositis (JDMS) affects 3,000 to 5,000 children in the United States. While certain signs and symptoms are common in most children with JDMS, the disease affects different children in different ways. The following information describes the general symptoms of and treatment for JDMS, but it is important for you to discuss your child's particular case with your doctor.