PANDAS Dad Raises the Bar: Step Up and Hunker Down

This blog post is intended to be an open message for all dads who help care for a child with PANS or PANDAS — beginning with this Rocky Balboa video.

So, did you identify with Rocky? Or, the punching bag?When I showed this video to my husband, I honestly could not stop laughing as I struggled to utter the words, “Look honey, this is you and me all those years when Aidan was sick…and you were my proverbial punching bag.”Funny. Not funny. The honest truth.

If you are a dad with a PANS or PANDAS child, and you have been spared from being your wife’s punching bag, then count your blessings and give your wife a hug. But if you’re not feeling quite so blessed, then maybe this blog will help provide perspective, and more importantly, direction and hope.

I collaborated with my husband over a few craft beers before sitting down to write this blog post. There is no one who knows what it’s like to be Rocky Balboa’s punching bag more than my husband, Mike. It is with honesty and humility that I share Mike’s candid responses to my blanket conversation opener, “So, tell me what you want to say to other dads who share the prized ‘punching bag’ title.”

And here are Mike’s gems of advice — completely unedited.

  1. Try to maintain perspective. No matter how beat upon you feel as the dad, it probably pales in comparison to the how your spouse feels. Yes, having a child who is suffering from PANS is stressful on both parents, but often, it’s the mom who has the internal instinct to heal your child and get to the root of the problem. When finding the right medical care seems impossible, your wife probably feels more defeated than ever before.
  2. Don’t give up on your spouse or child. It would be so easy to walk away—being beat upon by your wife and your child is a double whammy. Looking back, I know my child couldn’t help himself, and my wife was so consumed with our son’s pain and rages that she didn’t know any better either. Please understand that I am in no way excusing how my wife lashed out at me; however, I do know that had she not been pushed to the edge daily by Aidan’s aggression and obstinance that she wouldn’t have lashed out at all.
  3. Everything cannot fall on your spouse. Having a sick child takes a toll on everyone involved. While every dad with a PANS kid may not have the passion, know-how, or connections to find the path to healing for his child, we do know how to pick up the other pieces and run with them. We can grocery shop, meal plan, pack kids’ school lunches, wash and put away laundry, help kids with homework and projects, sign school permission slips, and even chaperone a school field trip (or two). Face it dads, we are adept at pitching in and saving the day at our jobs. There is no reason we shouldn’t keep our capes on after we come home for the evening. And, honestly, weekends are no different. If you have older children, then solicit their help and reward everyone’s efforts afterwards.
  4. Forgive and don’t hold grudges. This one is for the dads and the moms. Nobody is perfect, especially in this situation. We all make mistakes and lash out. Know that this pain and these struggles that feel overwhelming beyond belief will not last forever. In the meantime, try your best to learn new ways to stock your stress management tool box. Since Aidan’s healing, MJ and I have repeatedly said that if we had the skill set then that we have now that our PANS journey wouldn’t have been nearly as painful for us as a couple.
  5. Remember that intimacy isn’t just sex. Intimacy is spooning, caressing, holding hands, or taking a walk together. Intimacy is just being together — without distractions — regardless of what happened yesterday or that evening or how exhausted either of you are. Sitting still, sharing the same space, being in the moment, feeling the same emotional connection that brought you together many years ago takes no physical exertion. There are no excuses. She cannot say that she is too tired, has a headache, or isn’t in the mood. Even if all of those things are true, she can still sit and hold your hand. Give her time to soften. In the end, that’s what she really wants and needs — to share a quiet space with her husband and forget the stress that has consumed your marriage and family.
  6. Be mindful of depression and other dramatic mood shifts. Caring for a PANS child can trigger depression in a parent who has never been depressed and compound the effect in a parent who already struggles with depression. Take notice of excessive crying, sleeping, alcohol consumption, and other behaviors outside of the norm. Broaching the issue with your spouse will most likely not be easy, so reach out to a counselor for guidance. While all of this is new to you, a counselor helps people just like you and your wife all the time. There is no need to go this road alone.

MJ here again…

Proof that we really did write this blog post over a few craft beers...

I hope you find some of Mike’s insights helpful. He really is drawing upon real-life experience. I remember him making school lunches — he still does, taking charge of the laundry, running interference with school assignments, accompanying the older kids on field trips, trying desperately to get me to step away from the computer and cuddle with him on the couch, and even trying to talk to me about how my depression was steadily worsening. While much of Aidan’s sick years are a blurry memory to me, I vividly remember how Mike kept the ship afloat so that I could tread water looking for ways to pull Aidan out of a riptide called PANS.

In hindsight I regret not retiring my boxing gloves sooner and recognizing Mike’s efforts with two simple words — thank you. My hope for the dads reading this blog is that you are able to find new ways to support your wife and family so that she can focus on your child’s health. My hope for the moms reading this post is that you recognize your husband’s efforts if not in the moment then shortly thereafter.

It’s also important to help one another refuel and celebrate the small wins in your PANS journey — even if the only win all day long is that you both gave it your best shot and thanked one another.

Take a deep breath, embrace each other, and if you feel so inclined to raise a glass, then by all means do. Cheers.

MJ Keatts is a mom of three – one of whom inspired her to start this blog. A journalist by trade, minimalist at heart, and a stunt girl in her dreams, MJ proudly admits that she’s learned more from her kids and husband than she could ever teach them herself. She loves to laugh – especially at herself – and one day hopes to amaze her husband and be ready on time.

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5 Comments


  1. You both stated so well what it’s like to be in this battle. Kudos to you for sharing what you have learned as a couple along this journey! Cheers!

    Reply

    1. Amazingly the last person I feel has used me as her perverbial “punching bag” is my spouse.

      However more likely then not it is from women who make assumptions that “Dads” somehow don’t do the brunt of or the equal share of the; caregiving, research, doctor appointments, comforting, legislative advocacy, calming the rages, laundry, etc plus working full time.

      In our household it’s a TEAM effort (#TeamRyan) and I would never discount the contributions, sacrifices, love and caring my wife has given our son and toward conquering PANDAS.

      Every day is a battle to save our children and the most important thing that we can do is provide a safe, stable, loving environment for them. This is something that is absolutely in our control. PANDAS/PANS isn’t….sometimes it is difficult to just manage it.

      Never think of your partner as anything less then an equal partner, if you do…you are failing not just them, but your children too.

      Reply

      1. Randy,

        Thank you for reading my blog and sharing your thoughts.

        I couldn’t agree with you more, and treating your spouse as an equal partner is the whole point of my husband’s message — one parent cannot do it all. By no means did we mean to insinuate that there are not fathers who share equally in the caregiving or raising of a child (or children) with PANDAS or PANS. However, after speaking with numerous PANS parents, admittedly mostly mothers, I’ve heard firsthand that isn’t always the case. Unfortunately, many spouses do not believe in the diagnosis; there are spouses that don’t help with caregiving; and there are spouses that are just at a loss of what to do in the midst of the chaos of having a sick child. This post was intended to give guidance to those in that situation.

        Looking back on the years when our son was sick, I can say that Mike and I did the best we could to be a united front and a strong team. If I am being completely honest, however, I will also say that we would have been an even stronger team had I been better at not taking my frustrations out on him. My hope is for moms and dads alike to read this post and find ways to channel their frustrations more productively and become a stronger team and couple.

        It sounds as if you and your wife are a great team, and I wish you all the best as you try to heal your child.

        Reply

  2. Great article! It has given me some new perspective and guidance!

    It sounds like your son got better with time… How did his story ends? What helped him?

    Reply

    1. Thank you, Glenn, for reading my blog.

      Yes, our son did get better over time and is still in remission. Although he was 11 when officially diagnosed with PANS, looking back on his medical history we think he had PANDAS very young — about age 3 — and later moved into the PANS diagnosis zone following a mycoplasma pneumoniae infection at age 11 that went untreated for longer than his body could handle.

      What finally worked, you ask? In the end, plasmapheresis was our silver bullet. Even after the first of six blood “cleaning” sessions, we began to see a smile and sense of calm that we had never seen before in Aidan. Before this we tried high doses of antibiotics for extended periods of time — even months, steroids for longer than I will even admit to in writing, low-dose IVIG that was intended to rectify a strep immune deficiency and hopefully help his severe aggression, and high-dose IVIG, which in the end only gave us a one month reprieve. In short, we tried everything possible, including healing his gut and addressing the gut-brain connection.

      I believe that Aidan’s immune system was so far gone before we even began using every trick in the book. Fortunately, Aidan responded wonderfully to the plasmapheresis. We continue to dose him with a low dose of antibiotic and ibuprofen as we deem necessary to keep him in check. April of this year marked one year of remission for Aidan, and after 11 years of unyielding rages, opposition and defiance, we are learning to live as a family in an entirely new way.

      I wish you success in healing your child. Please know that you are not alone. PANDAS and PANS are finally receiving national recognition by researchers, doctors and even more importantly, the media.

      Sincerely,

      MJ Keatts

      Reply

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