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

Finding Dr. Right -- Finding An Appropriate Pediatric Rheumatolgist
Written by Kathy Gaither
Parent & Editor - For Kids' Sake newsletter
JSDN - Founder/President

It’s not that easy finding Dr. Right when they’re limited by geography, limited number of pediatric rheumatologists, HMOs & insurance.

Trying to find Dr. Right is like trying to find a needle in a haystack. No doctor of any kind is perfect. Unfortunately, you need the doctor to help you, so choose carefully and if the choices are limited (as they almost always are with Pediatric Rheumatologists) make sure that there is a team effort with everyone working toward the benefit of the child.

When It’s Time To Find Another Pediatric Rheumatologist
There may come a difficult time when you will need to find another doctor, such as a pediatric rheumatologist for your child’s juvenile scleroderma. This could be a difficult decision to make. You may feel guilty for leaving your child’s doctor after many years. You may feel that you will hurt their feelings. All of these mixed emotions can make it hard to make the decision of leaving your child’s doctor to move on to find what you may feel is a Dr. Right. Don’t let these mixed emotions get in your way. If you feel this way to begin with there must be a reason. Sit down and make a list of the reasons you feel you need to find another pediatric rheumatologist for your child. Call your insurance company and let them know why you are needing a new pediatric rheumatologist for your child or let them know if your child’s pediatric rheumatologist has closed his/her case for whatever reason(s). Insurance companies need to know what is going on with the doctor/patient relationship if it goes sour. They often can do something about it.

Here are just a few signs when it’s time to find another doctor…

  • Office staff or doctor is always rude or insensitive
  • Doctors age too, and he/she may not be as good as they used to be
  • Doctor doesn’t listen to you or your child and/or interrupts while you are speaking
  • Doctor rushes through your child’s appointment

Finding An Appropriate Pediatric Rheumatologist
There have been many times that a parent for the first time has taken their child to see a pediatric rheumatologist and felt that they didn’t know much about children with scleroderma. Not a good feeling! There are many ways to find an appropriate pediatric rheumatologist. Contact the Juvenile Scleroderma Network and ask for a pediatric rheumatology referral in your area. Visit the American College of Rheumatology’s website. They have a section to locate a pediatric rheumatologist in your state. Your child’s pediatrician might know of a good pediatric rheumatologist.

Here are just a few signs to know that you have an appropriate pediatric rheumatologist:

  • Doctor has experience and is knowledgeable with juvenile scleroderma
  • Incorporates you into the decision making process…in other words you both work as a team
  • Office staff and doctor are courteous, respectful and listen
  • The whole doctor’s office is organized

Warning Without Notice: Abandonment It Can Happen
As a parent with a child who has a chronic illness always look for flyers around the reception area when you check in if the doctor has information about missed or cancelled appointments. Read thoroughly any papers the office may give you. If they have a policy that clearly states that if you miss appointments or cancel appointments they can choose to terminate your child’s file, although your child’s doctor has an obligation not to ‘abandon’ patients once they have entered into a patient relationship with them. Then there are some doctors without warning by any ways of communication including not posting or given any policies that pertain to missed or cancelled appointments feel they can close your child’s file at any time. The doctor could be found liable if they abandon their patients without giving further medical care with ample time for the clients to secure another doctor. And we all know what the waiting list is like for a new patient. We are talking months in most pediatric rheumatology offices. So, please beware.

Parents Speak Out: What Do You Expect From Your Child’s Pediatric Rheumatologist

  • Doctor’s have to be able to hear what you have to say as well as tell you what to do. They also need to be “children friendly” so that your child feels comfortable
  • Open communication – to be able to talk not only to the parent but to the child as well
  • Updated information on new treatments and results from all tests.
  • Be patient this may be overwhelming at times
  • Children do get sick at times of their appointments or are not feeling well enough to sit in a car to travel long distance to a appointment

On this topic there were lots of praise for many of the pediatric rheumatologist. Many are happy with their child’s pediatric rheumatologist. They appreciate their pediatric rheumatologist asks for their opinions and speaks to them as a person. Many of their children’s pediatric rheumatologist are encouraging and very accommodating with lots of care and understanding.

As a parent the relationship with your child’s pediatric rheumatologist is the foundation of your child’s health and well being.  

Find a Pediatric Rheumatologist -- Click Here

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.

Non-Medical Questions or Comments? Click Here
Medical Questions? The Doctor's In: Q & A


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