Lisa Kilion – PANS Life, ASPIRE Key Volunteer
- Find your circle of support. As a parent of kids with PANS, find your circle, whether online or in person. You need other parents who get this situation without judgment or lengthy explanations. We have all been through so many of the same experiences, from kids questioning why they were born to wanting to die, wishing for other parents, etc. Many of us have laid awake at night, soothing a child who cannot be separated from us, rubbing their back until they fall asleep. With your other hand, message or text with another parent.
- Find meaning in suffering. Become an advocate. Assist at conferences or repost information. Yes, many PANS parent’s and patient’s posts on social media don’t get the feedback and heart emojis that their puppy will. But occasionally, someone might just message you to ask for information, a doctor’s name, a lifeline. Outreach helps to protect you against your inner turmoil. Know that you are never alone in this.
- Do your research. No doctor will know it all. And no doctor knows your kid or yourself better than you do. Understand why you’re paying out-of-pocket for a doctor who goes the extra mile to save your child. Understand the link between the gut and the brain, hormones, the symptoms, and how to treat a Herxheimer’s reaction.
- Don’t ever quit. My motto is from Finding Nemo, “just keep swimming.” You may feel like quitting, and it’s ok to entertain that feeling for a couple of hours, but, no, you must not do that. Everyone will suffer—your child, any siblings, a spouse, you. Find ways to keep on fighting. Always have an option B – a window for when the door is closed. And this can bring you back to Tip #1 – when that proverbial door closes, you will need your tribe, your team. You will want their support and advice.
- Take care of yourself. Exercise. Take anti-depressants if you need them. See a therapist. See a marriage therapist. Go away alone or with your spouse if you can (most of us can’t, especially when a child has separation anxiety or is flaring, and many of us have used all monies for medical treatments and have nothing left for enjoyment.) Go for a walk and stare at the sky. Write. Plan a party with other PANS families. Make it a pot-luck (or everyone brings their own food, based on their particular food plan). Appreciate the cuddling, the pets who bring down stress in the home, the chocolate bar on your desk, the family member or friend who supports you. And when you look at the social media of others, remember, as my godmother has advised me, to not compare your insides to someone else’s outsides.
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