1. Document The Details. Keep track of symptoms, their onset, and severity in a timeline, and even make references to your child’s typical pre-PANDAS behaviors. Collect all information in a binder so it’s available for doctors.
2. Choose Your Team. It takes a village—sometimes a pediatrician, neurologist, psychologist, school nurse and others—to get through the rollercoaster of symptoms. So choose your child’s doctors carefully based on most relevant needs. When you reach out, don’t be afraid to ask about the doctor’s familiarity with PANDAS.
3. Create An Actionable Plan For Treatment. Include a treatment timeline of what you expect and when, knowing the direction may change. For example, if antibiotics aren’t effective, consider next steps. The longer kids go without improvement, the harder the recovery.
4. Stay Informed & Share With Others by joining online forums or attending a conference.
5. Celebrate Successes On The Road To Recovery. Share positive experiences with other families on the same journey and remember you’re not alone.
To read Angelique LeDoux’s account of her daughter’s recovery from PANDAS, click here.
