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  • Writer's pictureBritany Libutty

Self Care for PANS/PANDAS Parents

Updated: Feb 10, 2022

It seems so cliché to hear:

"you need to fill your cup before you fill someone else's,"

I'm here annoyingly remind you that the above quote is actually true and unquestionably something you have to actively do for yourself. Self care is the act of taking care of yourself, or putting your needs before others'. It is something that as parents or caretakers we often don't think about doing- because the well-being of our children is more important naturally? Right? Wrong.

It took me a few years of being severely sleep deprived and wasting way too much of my free time fretting about 'big' decisions (that I now know are actually *not* that big of a deal) in my children's lives to figure out that I was running myself absolutely into the ground.

In a turn of events, when I found myself at my worst from mold-illness I realized that I absolutely HAD to put myself first, because frankly if I didn't I wouldn't stay alive and be able to care for my children the way that I felt they needed to be cared for, and I didn't know if anyone else would ever be able to.

So for a spell, I had to complete check out of providing anything outside of basic needs and love for my kids and just focus on myself. It was extremely hard and I felt extremely guilty. I had to keep actively reminding myself that if I didn't use this time to care for myself that I wouldn't have the possibility of recovery- and going back to being more of the mom I wanted to be for my kids.

I am grateful that my husband stepped up in a big way taking over most of the parenting while working overtime every week to support our health needs. My family needed to learn a new way of functioning without me, and I needed to learn to trust that they could do it without me.

(This was actually a huge blessing for me as I worked through a lot of control issues at this time, simply because I was forced to- I couldn't do much of anything anymore so I had no choice but to give up control...and I saw that the people I loved would still be okay without me doing everything for them.)

A big first part of my mold recovery journey was focusing on treatment protocols for mold and co. but another large part I viewed as self-care, Whenever I went into a 6 hour long day of: IV ozone treatment, IV vit C, IV PC, IV glutathione, IV ALA, and hyperbaric O2 I would enter the office and joyfully let the receptionist I had arrived, "for my Me Time!" My doctor would run my lines and I would let her know how excited I was for each day "at the spa". She thoroughly enjoyed how I viewed talking about treatment and encouraged me to share my spirit with the other patients in office. I would use books and music as ways to engage myself during those long days, and would relax and embrace someone else using medicine to care for me.

I set my intentions to create a more parasympathetic state (which is the state your body needs to be in to heal) as I was receiving those long treatment days. And honestly, I naturally felt more relaxed because I could go somewhere aside from home where my focus could totally be on myself/my well being, and I actually really came to appreciate and enjoy that.

Today, we hard a great morning with a visiting friend giving our children a super fun playdate, and then we a hit a huge speed bump in the middle of the day when our older PANS child had a long meltdown sceam-fest and was just absolutely miserable to herself and everyone else. I was trying my best to be supportive and mindful and help problem solve the situation, but it just wasn't a situation that could be helped. My husband and I both tagged in and out of trying, and both were exhausted by the end of the hour and a half episode. It was so hard to work through because she was obviously suffering, but the PANS behavior was a total monster. It only ended because I had to turn to Ibuprofen- which is our "rescue medicine" and helps stop brain inflammation occurring because of PANS.

Now, my husband has graciously taken our re-set child and our younger kid to the library and I have some time to re-set myself.

As PANS parents or caregivers, we NEED to focus on our WELL-BEING.

A few weeks ago I created a Self Care Poster:

and I have been rotating through it for ideas of how to relax or re-set myself.

It's been very helpful. I can physically, mentally, and emotionally feel how much a I lose when PANS flares hit our child, and it is vital that I find ways to balance that out.

I also find that a huge thing that has helped me is letting go of expectation.

There is no "should."

Nothing/no-one has to be a certain way.

Nothing should be a certain way, who would be the one to set those parameters?

No one has that ability.

If we learn to embrace the moment for what it is, fully, and the move through it,

we are all the better off.

If we embrace people for who they are in all of their moments, we will all be better off.

I want to share some other ideas as well for you all, and hope you use them to help take care of yourself. No one else can help you like you can, and no one else knows what you need like you do. Please takes these ideas and choose what best serves you.

Setting a fixed time of day for regular Self Care is an excellent practice.

Aim for 30 minutes-an hour a day. Really, you are worth that.

Remember that putting yourself first isn't selfish or wrong.

It is being smart enough to realize that you can not help others until you help yourself.

Try some of these ideas in addition to the ones on my poster (above)^

● Say yes to help/ Ask for help. ● Say no to tasks you don’t want to do or don’t have time to do ● Protect your time and do not overcommit. ● Ask for space because we all need our own time to just breathe. ● Speak up if you feel uncomfortable with how someone is treating you. ● Stop over-explaining yourself to others.

● Give yourself the grace to try again when moments don’t go as planned. ● Allow yourself to cry. ● Close your eyes and visualize a calming scene. ● Take 3 good cleansing deep breaths or try 4x4x4 breathing. ● Massage the arches of your feet, the palms of your hand, or your neck. ● Pick a sunny spot and stay in its warmth for a few minutes. ● Try aromatherapy using a candle, inscent, or diffuser with scents that may relax or energize you.

● Join a book club, board game club, art club.

●Write in a gratitude journal.

●Find ways to engage your senses.

●Turn your bedroom, or another place in the house, into your retreat.

●Take a break from electronics

There are also wonderful tools and acknowledgements on this webpage:

(Imagine taken from Please see them for more PANS/PANDAS info

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