Living with PANS: A Parent’s Perspective
This is a difficult post to write and one I have been thinking about for a while now. I have always been very open about my own experience recovering from tick-borne illness. While I am usually a private person, it came easy to open up because my goal was always to help someone else in need of guidance or support. But this is a harder story to tell because it involves our 10-year-old son, Finn. It is a story that has caused a tremendous amount of pain as a mother. I have watched our beautiful boy’s vibrant and energetic personality literally wither away, just like the muscle tone he developed over several years of playing hockey and soccer. Before PANS, Finn was known for his sense of humor, his love for fast cars, and his Terriers hockey team. Rides to school and games were often filled with laughter as Finn would put on his British or Australian accent and share stories about searching for wallabies in the outback or eating biscuits in London. If he wasn’t talking, he was singing. I loved his voice and would turn down the music just enough so that I could hear him sing. And then he knew when it was time to prepare for battle. Before every hockey game, he would turn on rap music and do planks and sit-ups in the car in anticipation of soon taking the ice.
Then everything changed.
Our vibrant, healthy, and energetic child changed overnight. It started gradually with fatigue and weakness in his extremities. Then one evening he started to scream, “make it stop!” He held his hands to his head while pacing back and forth screaming over and over again. I tried holding him and he pushed me away while screaming, “I need help! Leave me alone! I need help! LEAVE. ME. ALOOOONE!!” I was terrified as I had no idea what Finn was experiencing and did not know how to help him. Things seemed to escalate every day as the old Finn withered away. His eyes drew sullen and surrounded with dark circles. His beautiful smile was now tight as he nervously chewed his fingernails and refused to go outside.
Very soon after, he gave up hockey and soccer and filled the many hours he used to spend on the practice field or practice ice nestled away in a fort he built in our living room. The few times I tried to get him to attend practice, he screamed in the car while punching the back of my seat. “I hate you. You are so annoying!! I HATE YOU! BRING ME HOME Noooooow!”
I was heartbroken and felt helpless as I watched Finn cry himself to sleep while begging for help.
In late October, Finn was diagnosed with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). PANS is a clinical diagnosis given to children who have a dramatic-sometimes overnight – onset of neuropsychiatric symptoms triggered by an underlying infection. In Finn’s case, Lyme, Bartonellosis, and Mycoplasma are all infections identified by his doctors as potentially causing PANS and its associated symptoms of obsessive-compulsive disorder (OCD), depression, irritability, and anxiety.
I feel very fortunate that Finn was diagnosed quickly and started treatment within days of his diagnosis. I wasn’t prepared for the heartache and depression that followed. I feel lost and alone again. I can’t describe the deep sorrow I feel when I look at photos of Finn, before PANS. I am mourning the loss of the child he was and I am desperate to get him back. Our rides to school are now quiet as he no longer likes listening to music and no longer chooses to sing along. There are no more pre-game workouts to rap songs before hockey and no more “Cowboy Cellys” after scoring a goal. He is quiet and withdrawn.
On Easter morning, he was triggered after being told to take a shower before we headed out for Easter brunch. His screams fill the house with tension and our bodies stiffen as we prepare ourselves for one of Finn’s many meltdowns.
“I hate this! I just want to be normal again! Everyone hates me! I just want to be normal!”
“You don’t know what this feels like! I hate this! Everyone is mad at me! No one understands what this is like! I just want to be NORMAL!!!”
I have had conversations with Finn that no mother should ever have. Every time, I take him into my arms and hope that he is absorbing everything I share with him.
“Finn, I need you to remember something. This is temporary. OK? This is temporary and you WILL get better. And, Finn, you need to give yourself some grace when these moments of rage happen. You know why? Because you are fighting a BIG battle, hon. And, when you have these moments of rage, you need to know that this is not you. It’s your brain. Your brain is on fire. So when you are able to calm down, please don’t be so hard on yourself. There are not too many people that could go through what you are going through right now. You are strong, you are RESILIENT and you are LOVED. Please don’t forget this, Finn. You are so brave and you are not alone. You WILL get better.”
Finn always collapses in my arms in tears while nodding his head to let me know that he’s heard me. He is exhausted and desperate for some sense of normalcy again and we are all learning to cope the best we can.
Moments of grace.
It’s been almost six months since his diagnosis with very little improvement. We continue to trudge along and pray fervently for the sun to shine again. We have been blessed with moments of grace that have lifted our spirits and helped get us through the unimaginable. The motivational message from Boston Bruin’s Charlie Coyle gave Finn the strength to keep fighting. The videos from his Terrier’s hockey team showing them chanting Finn’s name “on three” and doing Finn’s signature “Cowboy Celly” after a goal showed Finn how much he’s cared for. His daily game-night chats with classmates have given him something to look forward to.
He knows he has people rooting for him. He knows he has “triggers” from an illness that is preventing him from doing the things he loves. But, he still wakes up every morning, determined to get better so that he can play for his team again. He still has hope and he still has an enormous amount of support from his friends and family. He’s a fighter. He’s brave. He’s #FinnStrong.
Oh my, Brandi. Heartbreaking as a mama, I can only assume. Love and light being sent to Finn from VT. xoxo
Love you, Jess. Thanks so much for your note.
Brandi, dextromethorphan might help relieve some of Finn’s symptoms. The stuff in cough suppressants. Not a long term solution, but if it helps him then it would indicate that NMDA effects are part of the cause. So sorry.
Thanks so much! I will look into it.
Take these options seriously. Minor changes in brain chemistry can have major effects.
Try DXM with Finn. You can’t use it long term, but he might feel better with this for a few weeks.
I can’t believe you have to deal with this. So sorry. Your own health and now that of your kids.
Please give Finn a big hug from Healthy Plate Kate. I can’t wait to meet him someday soon!
Awww Kate. My boys are just as eager to meet “Healthy Plate Kate”. I can’t eat a cookie without them saying, “what would Healthy Plate Kate say if she saw you eating that?” Lol
Thank you for sharing this story with us. This is so heartbreaking, I am in tears. You must be going through so much I can’t begin to imagine how that must feel. #fFinnStrong
Thank you so much for your message. Your love and support mean so much to me.
I pray for Finn. Praying for your family too. How did you get well?
Brandi and Finn – I just went thru a similar situation with my youngest sons who was diagnosed with Lyme. The doctor scheduled time with the nurse to help coach and remind ME to help my son keep the perspective. (We caught it early. We know it/symptoms can get exponentially worse during treatment, and it may feel like it’s getting worse. He is young and was healthy and should be able to fight it really well and give thanks he IS stronger and healthier and not feeling as poorly as some do. And most of all, understand that my seemingly adult child ONLY has his short 17 years of experience and perspective to draw from. He has overheard a lot of my speeches and to remind him those are not in alignment with his particular situation. That last piece is when my son finally opened up and shared his inner most fears. You know kids listen but…. wow. I felt so bad! I didn’t realize he’d been listening so intently and THEN read everything he could on the internet which confused him when he was already neurologically impaired!)
I hope my experience helps in some way.
I can say my son now is back to “normal” and no longer experiences any lingering symptoms. It took almost a solid year before he could say that. His symptoms left in chunks over a period of weeks, but months into treatment that went down a road I’d never like to visit again.
Love and light to you and your family-
Thank you so much for sharing your son’s experience. It provides me with hope. I’m happy that he is doing well now and hope that Finn has a full recovery.
Thank you so much for your prayers! My story is the first post on this blog. I share my experience and how I got better. I hope it’s helpful.
My eyes watered reading this. Thank you Brandi for sharing this heartfelt story about your strong little man… Finn is the strongest boy I know – he is going to get through this! He has the world praying for his quick recovery. Many blessings!
<3 Rosy @resettransformheal
I appreciate your support and prayers during this time. It means the world to me!
This is heartbreaking to hear what Finn is going through but he is so fortunate to have you as his mom. You know how to fight for your health and you’ll do the same for Finn. You are so brave to share this story.
Thank you so much, Cara. Xo
Thanks for this post. I could have written the very same of my nine year old boy. A happy, funny, lively boy who can no longer play hurling, football, swim or just attend school full time. His rage is so out of character and leaves him and the whole family worn out. I read your post to him and he could relate to all of it. He is 6 months into treatment for Lyme. It is a slow process but we can see glimpses of our little boy coming back. Thanks again for sharing Finn’s story, it helps to know we are not alone.
I am so sorry to see that you are going through this as well. It is heartbreaking to see our children suffer. Thank you so much for sharing. It is helpful to know that we are not alone. I hope that your son continues to improve so that he can enjoy his childhood. Sending love and hugs to you.
Brandi. Please look into the Will Weigman protocol to help with your son. He has had tremendous success with children previously diagnosed with Autisim… from mute to singing, from crippled to running. It couldn’t hurt. Encouraging you to fight for th cure. Lyme Veteran, FB: Valley Lyme Support Forum
Thank you so much! I will look into it!
Thank you for sharing your story, Brandi! My 8 year old also has PANS due to mold exposure and now a parasite. The journey is so tough. Trust your gut and keep fighting for your sweet boy. You’ve got this, mama!
Thank you so much for your note. I am so sorry you are going through this with your child as well. It’s so hard to watch. Thanks for the words of encouragement!