“Mom, something is happening to me right now…”: Q&A with Kathy Sutherland on Navigating PANS PANDAS with Strength and Hope

Q: Tell us about your background and how you came to know about PANS PANDAS?

A: I first heard about PANS PANDAS a couple of years ago when one of the students at our school was hospitalized for mental health concerns. I remember hearing that the student was diagnosed with PANDAS, which led me to look it up. However, I didn’t think much about it until recently—April 25th, 2024, to be exact.

I’m a teacher, which means I tend to get sick right before the holidays! In December 2023, right before the Christmas break, my son Daniel and I both got very sick. We had a high fever, headache, cough, etc. After four days of not feeling better, we went to the hospital. The doctor did a chest x-ray on Daniel and said he had early pneumonia and prescribed antibiotics. My son seemed to improve over the holidays and was back to his normal self!

In March 2024, right before the March break, I left work with a brutal sore throat and fever. I knew I had strep throat and went to the pharmacy to get tested for Strep A, which came back positive. I was given antibiotics for two weeks and made sure to hide out in my bedroom, away from my husband and kids. Thankfully, they didn’t get sick during March Break.

It was during March Break that my son Daniel’s behavior began to change. Daniel has always been very intelligent, kind, and caring towards everyone he meets. He loves insects, drawing, music, and had recently started taking guitar lessons. He also loves soccer, swimming, and skating. During March Break, my husband and I noticed that Daniel was repeating himself a lot, especially under his breath. He randomly brought up that he really didn’t like the number 6 anymore and had a little ritual he had to complete each time he heard that number. I thought this was unusual, so I googled these behaviors, and OCD came up. Daniel was diagnosed with ADHD at the age of 7 and was taking a low dose of Vyvanse to help with his focus. His teacher and I both agreed he had better focus with the medication.

After doing some research on OCD, I thought it best to make an appointment with our pediatrician, which took about three weeks to get. By this point, we didn’t really notice the behaviors that had emerged during March Break while I had Strep A, and I didn’t consider PANDAS. We filled out the regular ADHD SNAP forms for parents and teachers, and everything looked overall fine. The pediatrician didn’t see any OCD traits and suggested that Daniel was probably just bored sometimes.

A few weeks later, Daniel started washing his hands a lot. This is a kid who usually needed reminders to wash his hands after using the bathroom. When we asked him why, he just said, “I don’t know, I just like to have clean hands.” However, his hands were getting dry and red. I remembered reading about handwashing when learning about OCD. Daniel also started telling on himself for everything and asking for reassurance, like “Mom, I just touched my nose, should I go wash my hands?” These changes in his behavior all occurred within a week. I also noticed that his handwriting had changed—usually neat, it became messy and incomplete in his daily school agenda.

I was deep into OCD research and joining social media groups. I described Daniel’s symptoms to a parent group on Facebook, and someone asked if I considered PANDAS. A few days later, Daniel took a turn for the worse.

On Thursday, April 25th, 2024, I picked Daniel and Sol up from school. Everything seemed okay. We grabbed pizza on our way home, and Daniel was telling on himself again for silly things. After dinner, Daniel and Sol asked to play soccer at the park beside our house. Sol ran out to the park while Daniel was in the bathroom washing his hands. My husband, who was working away up north, video-called us shortly after dinner. Sol continued playing outside while Daniel and I video-chatted with Dad. During our chat, we noticed Daniel was repeating himself a lot while talking. We encouraged him to go outside to play with his friends, and he willingly went to put his shoes on.

He went out the back door and yelled, “Mom, do you want me to lock the door?” I told him no because I was going to take Stewart for a walk and watch them play soccer. Daniel continued locking and unlocking the door. I reassured him not to worry about the door. Two minutes later, he was doing the same thing to the front door. I was still on the phone with my husband, and we were both like, “What in the world is going on?” Daniel then made it to our fence and started opening and closing the gate repeatedly. Eventually, he came back and said, “Mom, something is happening to me right now, and I don’t want my friends to notice.” He couldn’t describe how he was feeling because he couldn’t form a proper sentence without repeating himself. I knew something was wrong at that moment. In hindsight, I should have taken him to the ER immediately, but I thought maybe his ADHD medication was having creating side effects, so we stopped it, planning to go to the hospital in the morning.

Daniel, who usually slept well in his own room, couldn’t stay in his bed that night. He was up every two minutes, tapping on the floor and crying. His sister Sol was also crying because she knew something was wrong. I ended up bringing both kids into my bed while I wrote a sub plan for my classroom and did further research into PANDAS. Daniel barely slept that night. I woke at 3 AM to find him in the bathroom, opening and closing the toilet lid repeatedly and washing his hands over and over, crying because he could barely speak without repeating.

The next morning, Daniel’s speech dysfluency continued, and he was walking differently, moving his feet in a repetitive pattern. His arms were jerking and twisting, and he was making strange faces, like twitching his nose and shrugging his shoulders repeatedly. The grandparents took Sol for the day while I took Daniel to the Children’s Hospital. My husband hopped on the next flight back to Calgary. The nurse asked if there were any recent illnesses in the house, like Strep. I mentioned Daniel’s pneumonia in December and my strep in March. The doctor thought it sounded like OCD and brought up PANDAS, saying it was controversial but worth testing for. He did a throat culture and bloodwork for Strep A and prescribed a five-day course of antibiotics.

Our family doctor called the next day to say the throat swab and bloodwork came back negative for Strep A and advised us not to assume it was related. She managed to get us an appointment with a neurologist later that week. Meanwhile, Sol developed a runny nose and cough. I decided to have her tested for Strep A at the pharmacy. The pharmacist questioned why since she didn’t have a sore throat or fever, but agreed to test her, and it came back positive. This gave us hope that doctors would treat Daniel for Strep A. Our family doctor extended Daniel’s antibiotics for five more days but said that’s all she could do.

We saw the neurologist later that week. Daniel was still struggling with vocal and motor tics and repeating his steps while talking. The neurologist asked if we thought Daniel might have Autism, but we explained these behaviors were sudden and not typical. I brought in a PANDAS checklist and mentioned Sol’s positive Strep A test. The neurologist dismissed PANDAS, saying it wasn’t real, and suggested Daniel might have Tourette’s syndrome but it was too early to diagnose. She prescribed an antipsychotic and ordered an MRI and EEG to rule out tumors. Waiting for these results was incredibly difficult, but we were relieved when they came back normal. Eventually, a specialist diagnosed Daniel with PANDAS. His vocal and motor tics have disappeared since continuing to take antibiotics, but he still struggles with OCD at times. We hope this improves with the right treatment.

Q: What is the most challenging part about dealing with PANS PANDAS?

A: The most challenging part is the constant uncertainty and emotional toll it takes on the entire family. Seeing my son, who was once so full of life and creativity, struggle with these sudden and severe symptoms has been heart-wrenching. The waitlists for specialists and the lack of widespread understanding about PANS PANDAS make it incredibly difficult to get the help he needs promptly. It’s a daily battle to manage his symptoms, provide the necessary care, and maintain some sense of normalcy for our family.

Q: How has PANS PANDAS impacted you and your family?

A: PANDAS has drastically altered our daily lives. The stress of seeing Daniel’s dramatic changes, including severe motor and vocal tics, his inability to complete simple tasks like getting dressed, and the heartache of hearing him say he doesn’t like his life anymore and feels like he has been cursed, has been overwhelming. It has been very difficult to watch Daniel’s skills regress in such a short period of time. He wasn’t able to continue with his guitar lessons, went from getting perfect test scores in math to barely being able to do simple math tasks, and stopped drawing, which has always been his favorite activity.

We’ve had to juggle work and family responsibilities, with my husband taking time off to help manage Daniel’s care, as he hasn’t been able to go to school since the onset. The financial strain from missed work and medical expenses is significant, and the emotional toll on our family is profound. Despite these challenges, we are committed to finding the right treatments and support for Daniel to help him regain his health and happiness. His love for music remains strong and has played a vital role in bringing him joy throughout these dark days.

Q: Based on your experience, do you have any tips or advice you’d like to share with other parents of children with PANS PANDAS?

A: My advice to parents is to listen to your gut. You know your child better than anyone else. Take notes or videos and keep track of everything, such as dates of appointments, new symptoms, etc. Reach out to P/P parent groups on social media and share your story and hear others’ stories. Although it’s difficult to see so many families suffer, it’s comforting to know that we aren’t alone and there is light at the end of the tunnel.

Q: What have you learned from this journey?

A: I feel that this is the beginning of our journey, as it all unfolded in April 2024. So far, I have learned how incredibly strong my family is, especially my son Daniel. We tell Daniel every day how brave he is. Despite being put through the ringer with countless appointments, scans, blood tests, throat swabs, and unpleasant medicine, he remains the kind and caring 9-year-old whose smile lights up any room.

I’ve learned to be more forgiving of myself, to slow down, and to start enjoying the little things in life. I already knew how amazing my husband was, but this journey has truly highlighted what a great father Art is. He has spent most of his nights comforting Daniel to help him fall asleep and is up in an instant during the middle of the night when Daniel struggles with sleep disturbances.

I feel that my own mental health has deteriorated over the past four months, as I am constantly worried and feel like I need to do more, though I’m unsure what else I can do. My husband Art is my safe place, and his hugs and warm home-cooked meals have been medicine for my soul.

Through this journey, I am learning that our daughter Sol is also affected, so we need to be mindful of how we handle this diagnosis, as it impacts everyone. Not a single night has passed without Sol praying, asking God to help Daniel.

I have also learned the importance of support from friends and family. My best friend recently set up a GoFundMe to help us financially due to my husband taking so much time off work. It was truly humbling to see so many people come to our aid. During the first few weeks, when there were no answers and it felt like our house was crumbling, our friends brought warm meals and groceries. I have always struggled to accept help from others until now. The support and positive energy from our friends and family have certainly helped us find our strength to keep going.

Now that we are receiving treatment for Daniel and are starting to see improvements, I feel it’s our responsibility to begin advocating for others who may be struggling. I am excited to continue advocating for the Inflamed Brains Alliance and hope to participate in future events and forums. I will be forever grateful to the PANS PANDAS community, as without them, I’m not sure where we would be.

P.S. Next Saturday (Sept. 21, 2024), Kathy and her family will be walking to raise awareness and funds at IBA’s Steppin’ Out for PANS PANDAS fundraiser. If you’d like to support their family’s campaign, please consider making a donation to Team Daniel-son.