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

I'm Taking My Child To An Adult Rheumatologist - Why Should It Make A Difference?
Written by Thomas J.A. Lehman, M.D.
Chief Pediatric Rheumatologist
New York, NY

I often hear this question and it is important to be careful in answering.  Sometimes there is no pediatric rheumatologist within more than 100 miles.  Sometimes there is an excellent local adult rheumatologist with a lot of experience dealing with children.  So before I say anything else, I want to say that if you have the right doctor, it doesn't matter whether he is an adult specialist or a pediatric specialist.  However, there is a reason that they are separate specialties.

  1. Parents ask a lot more questions about what is going to be done to their children than they would ask about what was going to be done to themselves.
  2. There are special concerns regarding the direct impact of the disease and the impact of the medications on the rapid physical and emotional growth of children.
  3. Normal laboratory values for children are different and the physician must be aware of this and not mislead by values that would be normal (or in some cases abnormal) for an adult.
  4. Adult specialists may not be aware that it is safe and effective to use many medications in childhood even though they are not specifically approved for use in children (remember FDA approval regulates what a drug can be advertised for, not what it can be used for).
  5. Adult specialists often are so afraid that the medications might hurt a child that they fail to take adequate steps to prevent even worse problems caused by the scleroderma.

All of the issues I've described above are issues that pediatric rheumatologists are specifically trained to be aware of and deal with.  They are used to these problems.  Some adult specialists are, some adult specialists are not.  If you are going to an adult specialist with a lot of experience treating children, you should be fine.  If you are not, consider taking the extra time and effort necessary to see a pediatric specialist, even if only for a one time second opinion.  You may end up with a much better result.

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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