Resources for the Newly Diagnosed

MANAGE YOUR MEDICAL TEAM

Find A Doctor Who's an Expert
Find a doctor who has experience treating JDM or JPM. Specialists trained to care for children with Juvenile Myositis are typically Pediatric Rheumatologists. To find a Pediatric Rheumatologist near you, go to:
www.rheumatology.org/directory/geo.asp?aud=mem (American College of Rheumatology)

Communicate with your Doctor
Cure JM asked JM parents to share their thoughts on communicating with their child’s physician. Below is a compilation of their advice:

• As a parent, you are your child’s #1 advocate!

• Establish an open dialogue with your child’s doctor. During the initial visits, be prepared with questions. Your doctor should be more than helpful in responding to your concerns.

• Write down the doctor’s instructions and responses to your questions. You may not remember what all transpired during the appointment, writing down important information is vital.

• You should probably have another adult with you who can listen as well. Two heads are better than one!

• We all inevitably forget to ask a question! Don’t hesitate to contact the doctor’s office with questions in between appointments.

• Keep a list of important phone numbers handy.

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KEEP A JOURNAL

Starting Your Journal or Log
You may want to start by summarizing your child’s journey thus far. When did you first notice symptoms? When did you see the doctor? How did the diagnosis phase transpire? Then begin each new entry with the date. Log any symptoms, unusual occurrences, questions, doctor instructions and discussions (during appointment or over the phone). Keep track of medications, procedures and results. Log any fevers, illnesses.

Bloodwork/Laboratory Results
Requests copies of your child’s lab results and keep them in your journal or on file. This will be very helpful for future reference and when seeking second opinions or visiting other specialists.

The following website may assist you in understanding laboratory testing: http://www.carbonbased.com/modules/sections/index.php?op=viewarticle&artid=6

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BE PREPARED

A JM diagnosis is the beginning of a long and at times frightening journey for your child.  Read Child Life Specialist Cinda McDonald's answers to some of parents most common questions.

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GET INFORMED

• Spend time going through the Cure JM website to learn more about Juvenile Myositis.

• Remember that each child’s disease experience may be different.

• Search the Internet for information and participate in Cure JM’s JDM Discussion board to learn what other families are experiencing and who is treating their children.

For information on JM research, visit the following links:

PubMed
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

Calcinosis in Juvenile Dermatomyositis: Pathogenesis and Current Therapies
www.pedrheumonlinejournal.org/April/calinosis.html