Christine Kapetanakis – Board Member
- Lead with love. Do not yell or make your loved one with PANS more anxious than they are. Throw everything you know about reprimanding out the window. Instead, you need to hug, console & love.
- Put yourself in their shoes. Listen to what your kid is saying and how they are describing their thought. Then, imagine how they must feel.
- Safety first and find an ally. Sometimes, hospitals are unavoidable, especially when dealing with a safety issue. However, many hospitals don’t know enough about PANS PANDAS, so it can be helpful if their PANDAS/PANS doctor calls ER ahead of time. This can’t always be achieved, but it is worth trying if possible. Social workers at the hospital can sometimes help advocate for the patient.
- Find a support circle to help you vent and help problem solve. (ASPIRE FB group & ChitChat groups)
- Bring calming supports with you. Always travel with the one thing that can console your child, whether it be a song, a drink, a toy, etc. You can bring a fidget toys, a favorite food, or any calming tools. Work with your therapist for ideas too.
Return to section: