Top Ten Tips for JM Families
These ideas have come directly from parents of JM kids or from the patients themselves. The first few days, weeks and months after diagnosis are often overwhelming, and we hope these ideas will help you find ways to organize and support yourself and your child as you begin this new journey.
- Find a pediatric rheumatologist who has experience treating JM. 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.
- Get yourself a 3-ring binder to keep track of all the following:
- Questions for the doctor and other providers with room for their answers. INCLUDE DATES ON ALL NOTES.
- Copies of EVERYTHING !! Ask for and keep copies of all clinic/hospital visits, summary notes and lab reports. It’s oftentimes 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 doctor appointments Have additional copies of medication chart available for EVERY appointment, surgery, etc.
- 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.
- 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 side effects of medications to teachers and ask them to discuss these with students depending on the age of your child — most kids with JM are on steroids which cause a variety of physical and emotional changes, i.e. weight gain, mood swings, etc.
- Make sure 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.