In PANS PANDAS, sudden regression or sudden worsening of symptoms is not always as easy to see as you think.
Note from ASPIRE:
This story exemplifies how it is sometimes hard to see the sudden onset or sudden worsening of PANS PANDAS symptoms as you are living (struggling) through it. Remember, someone with PANS PANDAS does not need to be 100% free of all symptoms, behaviors, delays, etc. before onset; symptoms can pile up. The boy featured in this story had several challenges prior to diagnosis. Hence, as his parents, providers, and educators kept trying new therapies, seeing gains then seeing the loss of those gains, it was hard to see the big picture and identify those periods of sudden onset and sudden worsening of symptoms. It was not until medical issues in his sibling were identified, including Bartonella, strep, and mycoplasma, was PANS PANDAS considered. Then the pieces fell into place, and it was easier to see when he had hit walls – i.e., when he had periods of regression and sudden worsening of behaviors. He had been seeing Speech and Occupational therapists but suddenly he was dysregulated, had emotional lability, severe separation anxiety, was aggressive, fatigue, difficulty retaining skills, and behavioral regression. Then came what are now clearly signs of OCD along with sleep disturbances and executive functioning issues and increasing depression.
Here is our story:
I was in the bookstore shopping for holiday presents when I felt my phone vibrate. I looked down and saw it was from my son’s elementary school number. I braced myself. It was 10:00am, and I knew this wasn’t going to be a good call. “Mrs. N,” said the principal. “Ben has had a rough morning. It was time for morning work, and he ripped up his notebook. He pulled items off the bulletin board and threw books off a bookshelf. Then he started cursing and called me a vagina. He said and did all of these things in front of his class. Since he refused to leave the classroom, we had his teacher escort the entire class upstairs to the library. We then had to physically remove him using CPI (Crisis Prevention Interaction). He eloped the building at one point, and we eventually got him into an unused room. In this room, he was throwing chairs onto the floor and hitting and biting us. He said you were out buying him things at the apple store. I have no choice to suspend him for the rest of the day and also for tomorrow.” I responded with, “Suspended, he’s 6 years old, he has anxiety and school refusal, do you really have to suspend him?” And his answer was yes.
After sobbing on my way over to the school, I pulled myself together and walked into the school. I could see him sitting at a table in the principal’s office, his body stiff and his face mad, but he was quiet. They asked me to join Ben at the table. He looked angry and mad. The principal then went over briefly why he was suspended. I reinforced the message and told him that hitting, biting, and throwing things were not allowed. He reacted by forcibly trying to get me to not speak. We wrestled a bit so I could get his hand off my mouth. I was mortified. And he was 6 years old. A first-grader. How can a first-grader get suspended? How did we get to this point?
My Ben is a sweet, shy little boy. He is a loyal, gentle friend. In preschool, he always followed the rules. He even told me that other kids in his class were very silly because they wouldn’t always listen. He is the type of kid that even if he ran ahead, he would stop before crossing the street for me to tell him that it’s safe to go. He loved to color, paint, and created books with a friend. For years my husband and I would talk about how there was something in his brain that wasn’t working right. We just didn’t know what that was or how to help him. We had 2 older neurotypical boys, and our tactics worked well in parenting them. Why was nothing working with this one? How did we get to this place where he is aggressively fighting the adults at his school?
I was fortunate enough to have gotten an early start to help our son. He started OT when he was a year old because he has crooked thumbs, and I wanted to make sure he could use them properly. During the OT evaluation, they saw he had a lot of sensory issues. While working on that, they noticed he was behind in his speech. In hindsight, my oldest had sensory issues, but he really calmed and came together in kindergarten, and I figure Ben would follow a similar path. By three, he completed speech therapy for the language part, and we were only working on some articulation issues. He was almost ready to stop OT; the end was just a few weeks sessions away when we hit a wall out of nowhere. I remember the day I dropped him off at preschool, and he totally lost it. He was screaming and crying and threw himself on the floor. He didn’t want to go after months of happily going to school. Then the same thing would happen when we went to OT. He would be completely dysregulated and have a hard time separating from me. Now, every morning there was a battle to get him in the car. His OT therapist told me she didn’t understand what had happened. We made such great progress, and we were now stalled, sliding backward even. She described Ben as walking through water with wet, heavy clothes; his body was full of fatigue.
We saw a dietician, and we put him on a sensory diet and tried a few supplements. Things quieted for a bit. At school, he fell into a nice routine. He still struggled, but I was very proactive at setting him up for success. We would only go to events or birthday parties I knew he would do well at. Playdates were only with friends and parents he had known and trusted. He was very controlling at home, and we started to tiptoe around him and plan life separately for our family. My husband and I would divide and conquer between Ben and our older 2 boys. We didn’t do things as a family altogether, but we thought it was due to Ben and his brothers’ age gap.
At his Pre-K conference, I went in expecting them to tell me he was ready for kindergarten. He was bright and curious and knew all of his letters, numbers, and colors; he was happily getting out of the car to go into school each morning. I had spent the past 2.5 years advocating for him at school, only be told we were doing a great job, and they didn’t see any issues. But his Pre-K teacher was special. She really took the time to study and understand each child. She told me he was struggling with remembering basic routines and needed a lot of extra support in the classroom. My gut told me that this was a big red flag, as I knew she was really paying attention. At this point, Ben was going to speech therapy, but it was only for articulation. I decided to get a new full speech evaluation completed. The results were really surprising. He had lost most of the gains he made when he was younger. It showed a significant expressive and receptive speech delay. Even though we had been scheduled to complete his course of Occupational Therapy, we had another OT evaluation; more delays were observed. I decided to take him to get a full psychological-educational assessment at this point. I was pretty sure the speech issues would qualify him for an IEP. And well, the additional testing showed even more problems. The results were somewhat unusual. His IQ was strong, as was his higher-level thinking. But he showed struggles in all areas and no real areas of strength. The evaluator observed him and felt he was in too much physical pain to complete the tasks. He has attention issues but she didn’t feel his delays/regressions solely stemmed from this; she felt the cause was something else, but she wasn’t sure what. She placed him on an “anxiety and dyslexia watch“; we took a deep breath and started kindergarten.
The first week of kindergarten was okay. He had two friends from preschool in his class. His teacher was kind, warm, and understood kids with learning challenges. We started the process of obtaining his IEP. But as he started to settle in the classroom, he was unraveling at home. He was physically and mentally exhausted. He was controlling and needed complete silence at home. We would fight about going to school each morning. I tried every type of strategy I could think of to get him in the car. We hugged, we cried, we danced, we marched, we took his stuffed animals on an adventure, we fought, but nothing really worked. Some days we were an hour late, some days just 10 minutes. I somehow managed to get him there each day. The school told me to bring him in after everyone went in as I knew the chaos of kids lining up outside and walking in the crowded hallways were a trigger. It was a nightmare at home. He didn’t want to go to sleep at night, and he would follow me everywhere in the house. He needed to be by my side at all times.
I consulted a developmental pediatrician. Something didn’t feel right. Although he would refuse to speak and freaked out at our regular pediatrician visits, the doctor said nothing. Even when he turned five, he refused to speak at our well-visit. He only grunted. He also acted like he was being attacked during the exam, and the pediatrician is a gentle, lovely woman. The developmental pediatrician was wonderful with Ben and made him feel in control at the appointment. She looked for vitamin deficiencies and was convinced he had something called Pylori. The test was negative, and while I was relieved, I was also concerned as I knew things were not right.
Around Thanksgiving, his IEP took effect and we were able to get him Speech and OT at school. They were very generous in providing supports in school. His teacher was wonderful and intuitive at knowing when he needed a break before he had an issue. But he was starting to struggle more. In January, after the break, he was a mess. He was completely depressed and anxious. He was having huge tantrums at home and would have episodic tantrums at school when I dropped him off. His handwriting was almost impossible to read. At this point, we decided to seek out a psychiatrist. She agreed that he was depressed and anxious and thought we should watch for OCD. Then in the spring, she prescribed an SSRI, and we quickly saw some relief. Ben had sensory avoiding, but now he was longer afraid to go on the jungle gym at school. He was feeling confident in himself, and I thought we had turned a corner.
We also worked with a chiropractor who was working on retained infant reflexing and functional neurology. But then all of the gains I thought Ben had made came to a screeching halt again over the summer. He refused to do anything he used to like to do. He refused to swim or play. He started having tantrums that were growing more physical and violent by the day. He refused to do almost anything without some sort of bribe or transaction. The violent tantrums scared me. He’s was only 6, but at some point, he would be 16, and I knew I needed to contain this now or I would end up getting physically hurt.
And then out of the blue, my 13-year-old son got Bells Palsey. Although tick-borne illnesses were ruled out by his pediatrician and an infectious disease doctor, our chiropractor was still curious. He’s a young, out of the box thinker who is so smart and super knowledgeable about the immune system. He tested my 13-year old for all sorts of infections knowing that infections such as strep or mycoplasma pneumonia came back positive could be wreaking havoc on Ben’s system as well. Ben’s results came back, and his strep and active mycoplasma pneumonia levels were very elevated. He has scarlet fever once a few years ago but never presented with other strep symptoms. Our chiropractor told me that he thought Ben could have encephalitis of the brain…and that’s when I knew I had to look into PANS/PANDAS.
Once I had this information, I ran with it. I had heard of PANDAS but always assumed it would be a light switch moment. But Ben had so many delays and sensory issues that I didn’t see the change like when you turn on a light switch. We would level out and then take another hit. It was a gradual decline. I begged my pediatrician for antibiotics and immediately saw a change as the tantrums at home stopped.
Our regular psychiatrist recommended another psychiatrist that was known for treating PANDAS kids. I walked into her office, armed with our blood work and our history. After listening to our story, she said, “I’m going to send you to an immunologist but I am pretty sure it’s going to come back that he has PANDAS and Bartonella (which is why he is so mad and angry), and that you and your other son also have Bartonella. And well, she was correct.
It’s amazing when you finally get in front of the right people. What was such a mystery to so many was so obvious to the immunologist. The next few months felt like a tornado of doctors’ appointments. We saw the immunologist, specialty pediatrician, dietician, psychiatrist, and his regular pediatrician. Once I started reading more about PANDAS and seeing what other parents had written in Facebook groups and shared via Youtube parent panels, I realized that Ben sounds just like their kids. It was finally making sense. Over the years, before I would complete a new intake form for a new doctor, I would write notes about issues and concerns before the meetings to organize my thoughts. While I was putting together the puzzle of Ben’s life, I found the light switch moment. I finally saw when Ben had hit his first wall, when he had regressed suddenly and when his behaviors changed suddenly. I realized now that the issues and delays we were seeing were most likely due to Bartonella and strep, which had been constant in my house with his older brother, changed the game for Ben. After 3 years of hitting that wall and searching for an answer, we finally had it and could begin the hard work of healing.
I hope that sharing our story will resonate with someone else, and another child will get faster treatment. What helped me the most was having one friend that I could bounce ideas off of, that didn’t judge and just listened. Someone who knew my child was really struggling and wasn’t just being manipulative or “bad.” I also have learned that when I think all doors are closed, another one will open. There were so many times I could have given up and stopped searching for an answer, but I trusted my gut. I know I will continue to have to find more doors to open, but I hope and know we will overcome this difficult journey.