My gut told me to keep digging because up until that day my daughter did not have this struggle and I knew OCD and ASD are not sudden onset.
I will never forget the first three days of our experience with PANS. It still brings tears to my eyes and an ache in my heart that has burrowed deeply into my soul. It began with my then 13-year-old daughter calling me around noon on Sept 21, 2020, while I was eating lunch with some coworkers. She started the conversation with, “Mommy, I’m not sure if what I did was bad or not but I feel like I need to tell you”. She then proceeded to tell me something innocent that her brain was trying to convince her was bad.
That evening I sat confused as my daughter “confessed” things to me (no of which were even remotely severe) from present to many years prior that this bully, called PANS, was telling her made her bad. And what made it even worse is the look on her face. It was a look of terror like I had never seen. The only way I can describe it is she looked as if she was literally hanging by a thread, dangling over an edge, and there being no lifeline available. Every time I got up to leave the room, you could see a spark of fear light up in her eyes.
That night, the living room became our camp as I slept near my 13-year-old daughter because she feared sleeping alone for the first time in many years. The next morning my daughter called while I was driving to work, crying and desperate for me to come home. I pulled into the first “emergency vehicles only,” turn around on the interstate and drove as fast as I thought I could get away with to get back to my daughter. I was now frightened for my daughter and throughout that day things just continued to worsen.
She began having severe ritual OCD-like behaviors such as washing her hands repeatedly for extended periods, counting tiles while walking, closing and opening doors repeatedly, not being able to watch tv because certain things would trigger intrusive thoughts leading to compulsive behavior, etc. Her speech became affected as she could not finish a sentence without stopping somewhere in the sentence and repeating what she had just said many times as if stuck and on a loop, before becoming exacerbated, stopping, taking a deep breath, and then being able to move on.
She began having a fear of being away from me that she could not explain, she just knew that when I was not there she felt a sense of doom come over her that she could not shake off. Intrusive thoughts began to take over her life as she sat horror-stricken and questioned who she is, bringing with it a state of confusion because deep down she knew she didn’t want to be what the intrusive thoughts were screaming that she was, which made her feel as if she no longer had any control over her destiny or even a choice of who she is as a person. She wept huge tears of sorrow as if she was mourning the death of who she once was, as I held back my own flood with levees that were threatening to be breached any second.
Every bit of knowledge I had obtained through a degree in psychology, a career in advocacy, and an almost finished master’s degree in social work failed to provide any relief and I had nothing filed away in my experience bank as a mother to save my daughter from this thief. All I could do was hold my teenager tightly as she curled up like a toddler next to me and cried while expressing the fears that had replaced her dreams. I called our doctor and made an appointment, which was two days away.
In the meantime, I did some research (as that is my nature) and this thing called PANDAS/PANS kept popping up when I listed her symptoms. We attended the appointment, and our PCP did all the neurological screenings and could not determine what was going on and suggested we take her to see a psychologist to be evaluated for OCD.
The next week she was evaluated by the psychologist who diagnosed her with Sudden Onset OCD due to puberty, who said he could not rule out ASD, and he did not know enough about PANS to rule it out either. My gut told me to keep digging because up until Sept 21 my daughter did not have this struggle and I knew OCD and ASD are not sudden onset. Our PCP then suggested we see a pediatric specialist.
She became depressed and started to lose hope that she would be rescued. As a mom, this devastated me. I could not stand by and watch as this illness came into my home and kidnapped my child. So I sat down and began researching, joining PANDAS/PANS support pages on FB and asking a lot of questions. None of the local doctors familiar with PANS could get her in for a few months and we couldn’t wait that long. I refused to give up and a PANS mom suggested the practice she is currently with.
As we waited for our appointment about a month out I began to note the changes in my daughter. I noticed she would only eat or drink if I made her food. She was not eating the entire day on the days I was able to go to work because I was the only one who could touch her food. No one could sit by her except for me. She would not sleep in her bed or go into her bedroom. She would hold off going to the bathroom for as long as possible, would not even consider taking a bath and it took moving mountains to get her to take a shower. The intrusive thoughts were controlling every aspect of her life as if she had been kidnapped and the intrusive thoughts were her abusive handler. She had no reprieve. This monster was there every waking second of her day and even invaded her sleep with nightmares.
Schooling became extremely difficult for her as she could not focus, her short-term memory was not working as usual, and her concentration was off. She went from a child who mainly made A’s and B’s to a child at risk of failing the 8th grade. For weeks, in the beginning, I was only able to go to work if she could call and remain on my Bluetooth earpiece until I pulled into the driveway 10.5 hours later. Her pupils became dilated and remained that way from October till the present, with only a few days where they returned to normal. The dilation lets in too much light which causes migraine headaches.
Then on Dec 17, PANS took another turn in my daughter’s life. She came into the house in tears with the look of terror on her face, once again, after being out front for about 20 minutes. The intrusive thoughts had triggered the compulsions for her to keep taking steps forward down the driveway or something bad would happen, eventually leading her to walk out into the somewhat busy street. This was the moment that led to me to taking intermittent Family Medical Leave from my job.
Her diet has been modified due to sensitivities caused by PANS calling for a gluten-free, dairy (casein) free, and soy-free diet. And the medications seem endless. She went from a child who took occasional liquid ibuprofen for headaches to having as many as 18 different medications/supplements spread out between 4 times throughout the day.
And if that was not bad enough, this perpetrator even took away the things she held as a top priority in her life and had invested as much time as she had available to give each one. It fought to hold her hostage from her best friend who she was once inseparable from and it was trying to extinguish the fire she had tended for many years that kept helping her hone her artistic skills in drawing/sketching but although it had beaten her down to the ground, my daughter is a fierce fighter and she is not giving in easily. There are days I see a strength in her that far surpasses mine.
On a positive note, not everything has been negative. Her doctors are knowledgeable about PANS and know how to treat it. Our family, friends, and church, and community are lifting my daughter in prayer. Although we still have not recovered everything that was stolen from her, YET, she is drawing again, spending time with her friend, has recovered about 80%, I get lots of time with her. and her light has returned. Although the treatment is extensive and the time frame of recovery is not known, she is making progress each day, our hope has been restored and my daughter can smile and laugh once again.
~ Jay D, PANS Advocate