Lucy Fry – Founding Board Member
- Take care of yourself. “Should the cabin lose pressure, oxygen masks will drop from the overhead area. Please place the mask over your own mouth and nose before assisting others.” Finding out that your kid has PANS is definitely a loss in cabin pressure. And in some cases, it happens overnight. It’s a lot to absorb. Make sure you take care of yourself so you can be a more effective caregiver to your child.
- Trust your gut. You know your kid better than anyone else. Sometimes finding a doctor who understands can be difficult. If you go to a doctor and don’t like what you hear, go somewhere else. PANS is tough to navigate, and having a team of doctors who understand your child’s situation is a must. Once you have decided on a method for treatment, stick with it long enough to really know if it is effective or not.
- Educate yourself. PANS can be overwhelming, and there is a lot of misinformation out there. Use trusted resources like the ASPIRE website to get verified resources and information.
- Practice compassion and empathy. The psychological and behavioral issues your kid is having are not their fault. If they had a choice, they would not be this way. And brain inflammation is not the result of bad parenting. Ignore the nasty looks in the grocery store and criticism from your in-laws, and support your PANS kid from a place of love and compassion.
- Make time for the siblings. If you have more than one child, make sure you spend time with your non-PANS kids. Have lunch together, see a movie, or just go for a 10-minute walk together alone. PANS can be an all-consuming disorder and often sabotages family time. Siblings will often feel abandoned and ignored but won’t say anything because they see how taxed you are as a caregiver. Lead by example, too: express your emotions and allow yourself to feel anger, frustration, resentment, etc. It’s ok to cry – in front of your kids. We are only human!
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