These ideas have come directly from parents and patients. The first few days, weeks, and months after diagnosis is often overwhelming, and we hope these ideas will help you find ways to organize and support yourself and your family as you begin this new journey.
1. Find a pediatric rheumatologist who has experience treating JM.
- Find a physician with experience treating JM. Here are the members of Cure JM’s Clinical Care Network.
- Trust your instincts and ask questions until you are comfortable with what the doctor is telling you. If you are unsure about your child’s treatment, get a second opinion.
- You and your physician can also review this article below, which outlines the consensus recommendations from the medical community about treatments for Juvenile Dermatomyositis.
2. Get yourself a 3-ring binder to keep track of all the following:
- Dates and notes from appointments
- Questions for the doctor and other providers and space for their answers to your questions
- Copies of everything. Ask for and keep copies of all clinic/hospital visits, summary notes and lab reports. It’s often easier to get extra copies of labs, medical reports and notes in the chart during the appointment or hospital stay rather than going through medical records later.
- Treatment Changes
- Medicine Chart
- Insurance Information
- Nutrition or other Medication Information
- Daily Observations
- Take your binder to all appointments, therapies, etc.
3. Take care of yourself emotionally. A rare disease like JM is a challenging experience for children, teens, and the whole family. Taking care of your family is an important part of your family’s overall health. View our collection of resources for emotional health here.
4. Ask your Primary Care Physician to help you mediate or communicate between specialists.
If you are in a system with a case manager, contact one as soon as possible.
5. Create an information packet about JM and what your child specifically needs for your child’s school/teachers, etc.
- See www.curejm.org or Myositis and You for more details.
- Look into a 504 plan or an IEP— Visit our School Resources page for more information.
- Describe the side effects of medications to teachers and ask them to discuss these with students depending on your child’s age — most kids with JM are on steroids which cause various physical and emotional changes, i.e., weight gain, mood swings, etc.
- Ensure all teachers and parents of kids in your child’s class inform the school when another child is ill with a bad virus or other unusual illness. Your immune-suppressed child can more easily catch contagious illnesses and can get more severe forms of an illness.
- If needed, get a handicapped parking sticker/sign for your car. It will allow you to park closer to an office, school or store when your child has muscle weakness, and it will minimize sun exposure when traveling from the car to the building.
6. Get support.
Having a child with JM is stressful for everyone in the family. Join Cure JM and attend an event. Talk to a social worker or another therapist at the hospital where your child is treated. Reach out to your network of family and friends as well. Do not be afraid to ask for help. Help can take many forms, from providing meals to driving other kids to just listening.
7. Contact Pain Management Services at your child’s hospital if there are problems with IVs, side effects of medications or other issues related to pain.
8. Find time to do fun things.
Your child may be sick, but they are still a child and needs to play when possible. Also, include siblings in some special outings as well, because they might feel left out.
9. Be a “Mama Tiger” or “Papa Tiger.”
You are your child’s best advocate—you know your child best. Trust your instincts. For more tips on how to be your child’s best advocate, learn from other parents in our Facebook Group.
10. Get involved in raising awareness and fundraising for Cure JM.
It is one of the best ways for you and your child to stay positive and take back some control. Additionally, taking action is a great way to channel feelings of helplessness, frustration, and grief. Learn how to get involved here.