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

Getting to Know your Child's Health Care Team
Written by Kim Striegel RN, FNP
Pediatric Rheumatology Nurse Practitioner
Division of Pediatric Rheumatology
Hospital for Special Surgery
New York, NY
2000

Because there are many forms of juvenile scleroderma some children may have more than one health care provider. Your child's health care providers must work together to insure that your child receives the highest quality of care possible. You will be introduced to the members of your child's health care team and help you to become a more active participant in your child's health care planning.

The Team:
The most important member of your child's healthcare team is YOU! Only you know exactly what your child is feeling and your input is crucial. When meeting new doctors, introduce yourself and review your child's medical history, medication, and problems your child is experiencing. Ask the doctors about themselves! And always ask questions! There is no such thing as a stupid question or comment… sometimes things that may seem irrelevant are crucial to your child's diagnosis and treatment.

There are a large number of people working to insure that your child remains as healthy as possible. Sometimes, it is difficult to keep them all aware of what everyone else is doing. That's why it's so important for you to be aware of what their roles are and make sure that each team member is notified of changes in your child's medication or therapy regimen. With everyone working together, your child will have the best possible outcome.

Medical Doctors:
A pediatric rheumatologist is a doctor specializing in arthritis and related conditions that include juvenile scleroderma. They will be responsible for keeping track of your child's lab results, helping with pain management, physical exams, medications, and referral to appropriate specialist. To find a pediatric rheumatologist online, click HERE.

A gastroenterologist specializes in problems related to the digestive system. They will help with problems like heartburn, abdominal pain, difficulty swallowing, nausea, and bloating. They may need to do specialized testing including looking inside your child's digestive tract with a scope, a small tube with a light on the end that helps the doctor view the problem directly.

A cardiologist specializes in the heart and helps with problems like difficulty breathing with exertion, palpitations, or chest pain. The specialist will do a periodic electrocardiograms (EKGs); the electrodes are attached to your child's skin and a machine traces a picture of the electrical activity of your child's heart. Periodic echocardiograms use sound waves to allow the doctor to visualize your child's heart and its blood flow. Both of these specialized test are non-invasive.

A pulmonologist specializes in the lungs and helps with problems like shortness of breath or cough. They will do periodic chest X-rays and pulmonary function tests (PFTs).

A nephrologist specializes in the kidneys. They will closely monitor your child's blood pressure and urine specimens.

A dermatologist specializes in your child's skin and will help with problems like itchiness, tightness, dryness, and ulcerations of the skin.

Lastly, your child will need an excellent dentist that has experience with patients with juvenile scleroderma.

Nurses:
Nurses come in all sizes and styles. If your child has been sick and in the hospital then you know all about the nurses that take vital signs, and give medications etc. However, many pediatric rheumatologist now work with nurse practitioners or clinical nurse specialists. These nurses are specially trained in working with children with rheumatic diseases and in helping parents and children with their questions. As a result of their special training and extensive experience these nurses can help you recognize your questions about juvenile scleroderma and helping you deal with all of those issues you don't want to "bother the doctor with." Many times the doctor walks out of the room thinking he's answered all of the family's questions only to find out the nurse spent another half hour talking about things the doctor didn't even think about.

The pediatric rheumatology nurse is there for you. Ask her the questions you need help with. Have her explain things the doctor said that you didn't understand. You'll be surprised what a vital of your child's health care team their nurse is.

Therapist:
Your child's physical therapist plays an extremely important role in their healthcare. Inflammation around their tendons can cause pain and limitation. Your child's therapist will design an aggressive program with an emphasis on stretching exercises, range of motion, and strengthening. They can also help with creating any necessary splints or adaptive devices.

Occupational therapists are another vital part of your child's health care team. Their emphasis is on the use of your child's hands and adaptive devices they may need to do things like open jar with stiff fingers. They'll show you and your child exercises to make their hands and fingers stronger. Then they'll help your child figure out things like, how do you turn keys when your wrists are stiff? Ever wonder about how your child was going to get some things done? The occupational therapist is there to show you and your child how.

Dietician/Nutritionist:
Your child may have problems with gastrointestinal upset, weight loss, nausea, and difficulty opening their mouth. A dietician can work with you to create a meal plan that will provide all of the essential nutrients and help alleviate some of the symptoms and difficulties your child may be experiencing.

Social Workers:
Social workers are another important part of the health care team. It's their job to help you deal with the system. School doesn't understand why your child is late when they have an 8 AM doctor's appointment and they're threatening to flunk your child. Mom's job doesn't understand why she has to bring her child to the doctor so often. The insurance company doesn't want to pay for the things your child's doctor and social worker recommend. Mom and dad are arguing about how their going to pay the medical bills and buy groceries. Brother thinks no one is paying attention to him cause he's "well." These are the types of things social workers can help with. They work both with members of families to help them deal with each other and to help them deal with the rest of the world.

Many children think that they have juvenile scleroderma "all by themselves." It's not true. There's a whole team of health care providers working with your child to help them get the best possible outcome. You and your child do not have to battle juvenile scleroderma alone. We're all here to help you and your family battle the disease. Take advantage of every member of your child's health care team. Each has a different role and a different specialty. They may seem to overlap a little bit in some areas, but that's not the issue. More importantly they all overlap in one big area. They're all trying to help you and your child.

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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