PANS/PANDAS Treatment brought our daughter back

 

My daughter has always been anxious & a worrier, and we had attributed that to her learning struggles & severe food allergies. However, no matter these struggles, she always, always loved playing & lived and breathed sports. She is a beautiful athlete! As 6th grade began, she was thriving! I had met with her teachers in early December and was told she was doing so well. She made the high honor roll, was organized, loved going to school, and was doing her thing on the basketball court. Then she got a cough, just a cough, with no other symptoms. I took her to the doctor twice because she was beginning to get super anxious over her breathing. Then, on 12/28/22, she had a panic attack & everything changed.

Overnight, she became afraid of everything. She could barely make it to school, and if she did, she would spend hours crying in guidance. She was afraid of choking or becoming dizzy and passing out & had a very hard time letting me out of her sight (even just to shower). She would become enraged and developed tics. She began to withdraw from everyone around her, even her best friends. She had headaches and joint pain and was up all night in fear she would stop breathing if she fell asleep. She couldn’t walk into a store, couldn’t eat, and needed to be with me at all times. I would prep her for up to 3 hours to try to get her to a practice or game just to sit in the parking lot listening to her say, “I can’t” for the whole duration. She wanted to go more than anything; she just couldn’t, and I wasn’t willing to give up, so we would do the same thing the next day. She was regressing fast, and I felt like I had an infant.

I had flashbacks of dealing with similar behavior of extreme separation anxiety when she was in 2nd grade & had taken her to a neurologist and a therapist who said it was behavioral. At that time, I had asked for her strep markers to be checked, and sure enough, her antibodies to strep were through the roof, but she never showed symptoms. I was only checking these markers as a friend of mine was going through a nightmare of her own and posting about PANDAS. I was told by multiple doctors and therapists that she did not have PANDAS, and again, it was behavioral.

Fast forward to now, I couldn’t shake the fact that my girl who would wake up saying “let’s goooooo” was now screaming, “I can’t go,” and “Don’t make me go.” I again took her to multiple doctors and therapists, and they had no answers for us. we usually left feeling ashamed as it was often implied she was causing this and we were enabling it. She loved to eat and now could barely eat a pretzel without gagging. She was frail. Our house turned upside down, trying to figure out what happened to her. I couldn’t get my daughter, who loved basketball, to enter a gym?!?! This really scared me. How could her behavior change so drastically overnight? We tried everything we possibly could and nothing was helping. Then I saw her handwriting. It was as if a different kid was doing her homework. It was barely legible. I knew I had seen this as a symptom somewhere and googled & it was a symptom of PANS/PANDAS. At that point, I was convinced that this was what she had despite what my doctors and therapists told me, and I started looking up everything I could. She had every symptom. I was lucky enough to find a PANS/PANDAS doctor who met with us and has been amazing. These doctors are very hard to find and even CHOP does not have PANS/PANDAS doctors. Within a week, the doctor found indications of infection that triggered PANS/PANDAS in her blood and put her on a treatment plan. Her brain was inflamed from autoimmune encephalitis, as this was her body’s response to certain infections. The brain inflammation was causing the drastic changes in her behavior.

As parents, it was terrifying. I knew what she was going through was much more than anxiety or bad behavior (or bad parenting, which I may also have been told). It had to be! She didn’t want to miss her beloved sports, her best friend’s birthday parties, and seeing her grandparents. This had to be more & it was. I truly believe she has been battling this condition since she was 7. There were other times when I saw “flares.”

I know a lot of people haven’t heard of it but it does affect 1-200 kids, although I am hearing it’s much more. Our family is a regular family; we do our best to promote healthy habits, and she is the 1 in 200. I could go into the awful details of what occurred here from January to May 2022, but in short, I will say it seemed someone took my daughter & replaced her with a completely different person who looked exactly like her. She didn’t even recognize herself in moments of panic & terror.

She is now more than a year past the start of this nightmare and is doing so much better. Happily walking into school, hanging out with her friends, and managing 3 sports this season while trying not to miss any of her sisters or brothers’ games (or any game for that matter)! And that’s the girl we know and love.

She needed antibiotics, ibuprofen, and supplements. That was the treatment that brought her back to us.

Her doctor spends his life trying to find out why some kids respond to certain infections in this way, and all I do is read about it, as it consumes most of my thoughts. There are theories, but until the medical community recognizes them more, I worry other people in our situation won’t know where to turn. As a result, she and I have agreed to talk openly about what happened to her in hopes that it will help others.

I’ll end by saying what I kept hearing from other moms who have been through this similar nightmare. You know your kid; trust your gut. Keep pushing, there is hope! For whatever reason, a lot of doctors do not consider this diagnosis, and she was misdiagnosed many times. We are living proof that this condition exists, and as the doctor who saved my girl said, “She is a responder,” and I will forever be grateful for that. And now I can say I got my girl back

Let’s goooooo!

~ Suzy S.