Wendy Nawara – Founding Board Member
- Get a pet. Pets can provide a family with a concentration other than your sickness. Assign duties and expectations of caring for the pet, and hold your child to them.
- Make friends with nurses both in the school and in the doctor’s offices. They are your lifeline to better than adequate care. They will be invited to IEP and 504 meetings, so it is helpful for them to understand what PANS is and how it specifically affects your child. They can reinforce that behaviors and symptoms are due to a medical issue. They can serve as a liaison between the doctors and school staff; this can be especially helpful with absenteeism.
- Provide love and understanding to your child when flaring, but keep behavior expectations high and continue to talk about them with your child both during a flare and after a flare.
- Always get copies of medical records. Keep timelines of behaviors, illness, and medications taken. (Tracking Symptoms and Prepping for Appointments)
- Remember doctors are human too. They are not gods and don’t know everything about everything. Try to understand their individual limits and fill in gaps through the creation of a medical team. It is unlikely that one doctor will handle a patient’s medical care. (Provider List)
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