Helpful Information for the Newly Diagnosed
You or a family member has You or a family member has just been diagnosed with Juvenile Dermatomyositis (JDM) or Juvenile Polymyositis (JPM), and you feel as if the world has shifted under your feet. You’re not alone. The founders and volunteers here at Cure JM have gone through the same shock, uncertainty and fear that you no doubt are experiencing right now.
In speaking with JM families, we’ve identified seven "best practices" that are absolutely crucial when you, your child and family are battling Juvenile Myositis.
Manage Your Medical Team
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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/Directories/Find-a-Rheumatologist (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
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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
Request 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
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Get Informed
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Learn About Technology to Help Manage Your Child’s Care
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Technology has created some easy ways to manage your child's care online. Some websites and applications can help gather and organize your child's medical records, organize your daily medication schedules, prepare for doctors' visits, share records with providers and more. Here are some examples of applications that other families have found useful:
- Full Service Online Management of your Medical Records:
CareSync, (see example video below)
As with any technology, please read the small print and understand the fees, privacy settings and other important information for any application that you use.
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Be an Advocate
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You are your child’s best advocate. Parental intuition has served so many of us well! If something doesn’t seem right to you, don’t hesitate to question it.
Remember Sun Protection
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Children with JDM need to be careful when it comes to sun-exposure. Juvenile Dermatomyositis causes a sensitivity to the sun and ultraviolet light. In addition, certain medications can cause further photosensitivity. Skin tone may also add to the photosensitivity.
Parents of children with JDM have been advised by their physicians to be diligent about applying sunblock several times a day, providing their children with protective clothing and hats, as well as keeping them out of the sun during peak hours.
Some families have reported that they believe the sun may have triggered their child's JDM and have been told by their physicians that the sun may be one of the triggers for the disease.
Here are a few links to products that JDM families report they use:
Sun Precautions
www.sunprecautions.com
Sun protective clothing including pants, shirts, wide-brimmed hats, parasols and sunblock products.
Total Block
www.totalblock.com
Additional sites may be found by searching the internet using keyword: "sun protective clothing".
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Seek Support
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Visit our online discussion board. Parents who have walked the same path you have are here to support you. Sign up for our Family Support Network when you register with Cure JM’s Patient Registry and get connected with other families in your region. Take time for yourself. Seek out friends and family who are supportive and will share your burden.
Once you’ve read through this page, we also suggest that you check out the Top Ten Tips for Families Living with JM and our Video for Newly Diagnosed Patients. We would also like to encourage you to complete our Patient Registration. Once you’ve signed up, you’ll receive regular Cure JM Foundation newsletters, a copy of the Cure JM Welcome Kit, and full access to the Cure JM Family Support Network.
Remember, you’re not alone in this – we’re here to help.
*Cure JM Foundation does not endorse the individuals described therein, but rather provides this as an informational resource. In no event shall Cure JM Foundation be liable for any decision made or action taken in reliance on the information contained therein.
