Up until recently our PANS family story really only focused around T, but now X has own PANS story and so do I.
We got lucky. We got lucky that we went to every TACA event to learn how to support my son with Autism’s health and happiness, so we knew about PANDAS. Otherwise, I don’t know where we would be today. I highly doubt I would be a volunteer at TACA and president of ASPIRE. I highly doubt either me and my two sons would be where we are today. I can picture where we would be; it is a dark picture. We still have a ways to go; we are still in the struggle, but I will take any gain that comes our way. I wish that every family could be as lucky as us and find out about PANS PANDAS even before symptoms start, have access to a quick diagnosis and appropriate treatment. Until then, we will keep advocating and educating.
My non-identical twins were born 7 weeks premature. T subsequently received many therapies (ABA, OT, ST, PT) over the next four years when he was diagnosed with Autism and Intellectual Disability. We were told traditional therapy would only do so much; we should not try so hard to get him better because it would not really change his quality of life. And then doctors told me my other son, X, had speech delays and would be a slow learner. Picking myself off the couch after a few months of simply collapsing, I got both kids IEPs and more therapy. But T was so sickly looking; he had a bloated belly, his fingernails were falling off from fungal infections, he had huge shiners under his eyes, was so weak he could barely walk and had continual diarrhea. The pediatrician, developmental pediatrician, and neurologist all said it was part of the Autism, and there was nothing to bother doing. These were not hopeful words to be told. Unfortunately, I believed them for quite some time until I got fed up and said that someone needed to treat his medical issues at least.
I took him to a well-respected, local DAN doctor (now a MAPS doctor) who ran more tests than I thought possible. Titers for some viruses were higher than the doctor had ever seen. We slowly treated him, one dietary change at a time, one supplement at a time, one prescription antifungal, or antiviral at a time, etc. He went from a child who barely moved, who barely made a noise, who twitched and stimmed all day long curled up in a ball on the floor, who only ate five foods, who barely noticed us to a totally different child. He was now a child who played special needs soccer, who was interested in the world around him, who enjoyed doing things, who ate almost every food except broccoli and green beans, and who was clearly happy to see his family. It was a long road with a lot of work. Yes, he was still severely impacted with Autism and intellectual disability, but he was happy, engaged, and healthier. But, to me, it was clear, quality of life had improved.
Roughly 2.5 years into working on healing the comorbid conditions of his Autism, one year his brother got strep throat a few times, and I got an ear infection plus strep throat, but T didn’t (but now I know he had a classic perianal strep). The bottom fell out. Happiness gone. Replaced by a different child. Throwing up as soon as he got to school so he could immediately be taken home. Refusing all but a few foods again but then screaming for more because he was hungry. Screaming. Sobbing. Raging. Pulling me around the house, room to room, screaming with a look of terror. The school had thought he was oblivious to his schedule, but they called saying they had changed a few things and he would become distraught when something was different. Physically he was also a mess: he started having a tic in his neck, had skin peeling off his feet and hands in big sheets, again no longer sleeping at all, stimming became intensely worse, and his hands shook constantly. I felt in my gut there was something else to the puzzle. I met with a MAPS doctor who was visiting California and talked a bit about exploring PANS/PANDAS in earnest. Within a few weeks, I mustered the strength to get my kids on a plane to fly across the country to see this doctor who gave us hope.
The doctor had a pile of labs in front of him, kept asking questions, writing things down, and deciding on a course of treatment, all while keeping a constant eye on this little boy. Some of those viral titers that had been so high two years ago had come down a bit. Immune markers were not off enough to signal he would be a clear candidate for IVIG. But his ASO titers were definitely elevated. His AntiDnaseB were slightly elevated. Suspecting PANS, we did two rounds of Azithromycin. The tic in his neck stopped. He did not throw up at school. I didn’t take him home early from school once during those two weeks. Stopped the Azithromycin for two weeks and the tic came back. So back on the Azithromycin, he went. Tic went away again. His cognition improved greatly and was more engaged with the teachers and children at school. He went to school and stayed in school every single day. He started eating all his food once again. He stopped pulling me around the house, sobbing and screaming. He started looking at picture books, which he had never ever done before, which felt like a miracle really. His teachers had thought I was crazy for taking him all the way across the country to this doctor. They had thought I was crazy for changing his diet and putting him on all these supplements. They knew then, all of it now made sense, that he had been sick. The doctor officially diagnosed him with PANS.
We continued to treat him for PANS for the next year and then weaned him off antibiotics successfully. Because life doesn’t run a simple path, we moved across the country. That move didn’t get us much closer to our MAPS doctor. We could not afford the intake cost of a closer MAPS doctor. I was on the waiting list for a couple of local pediatricians, none of who seemed PANS literate. So we made it through the first semester okay. January came and unbeknownst to me at first, so did strep through half the school. And boom the bottom fell out again. But the flare was worse this time. Food issues became more extreme. He wanted to eat constantly but finding food he wanted to eat was difficult. He refused to swallow chicken. He would just hold it in his mouth and cry. He would eat beef some of the time. He would eat chicken broth, so I managed to get a lot of protein in him. He would eat apples if cut thinly. When he had fits of anxiety, his pupils would dilate, he would scream and sob. He had learned some self-soothing skills in the past year, and he was frantically trying to do them to calm down, but they didn’t work. He looked panicked and would collapse in tears when they didn’t work. I couldn’t get him to sleep through the night, and just getting him to fall asleep took hours because of rituals and anxiety. I met with the school, and within a week, all the goals that he had been steadily working on had fallen below baseline, way below baseline. He was suddenly un-teachable. The rages started increasing. His brother sobbed and sobbed because he was sure we would have to institutionalize this tiny child.
The same week, his brother X, who at the time we did not know should have already been diagnosed with mild PANS, starting peeing in every corner of his room and behind the couch. He was sobbing every night during homework and screaming he was stupid and was worthless, and of course not wanting to go to school. And then his teacher called and said there is something wrong because he clearly and suddenly couldn’t do arithmetic all of a sudden, his handwriting was illegible, plus his anxiety was out of control. He had had similar episodes the two years before, but I never thought he had PANS because I did not know urinary frequency or handwriting changes were PANS symptoms. And importantly, I did not think he was having intrusive thoughts, so I did not recognize that he had OCD. We did not realize until about 7 years later, he had intrusive thoughts because he thought they were normal and that he was just stupid and bottled it all up.
I was all alone in a new state with no doctor, flat out broke, with not only one child who clearly was in a PANS flare but now two. Honestly, I thought I would break right along with my kids. So I did what I could do on my own without a doctor, without prescription antibiotics, but with knowledge and experience gained over the past 5 years from taking T to two DAN doctors and one MAPS doctor. I would not ever choose to do it this way again, nor do I recommend it; they really would have done better in the long run with the MAPS doctor we have now. X recovered quickly, or so I thought from that flare. I know now the obsessive thoughts and anxiety he was having were increasing, but his ability to shove them deep down was increasing. T is more fragile, and the healing took a bit longer, but the immediate crisis was over, and within a few months, he was meeting the goals in his IEP. Since then he has had one more massive flare. But since we have been under the care of a wonderfully brilliant MAPS doctor, he has been holding steady for a couple of years with only some micro-flares here and there.
At age 14, X was diagnosed with PANS. There is part of me that has a lot of guilt and regret that he was diagnosed and treated so so so many years later. But in the early days, I did not know about some of the symptoms, and I did not know about Pure O, OCD without physical compulsions. I think if more pediatricians had known about PANS then, and yes, we still need to make tremendous headway on this front; he might have been diagnosed earlier. His PANS ended up not being mild but actually severe for a while. He definitely needed a combo of psychotherapeutic interventions and integrative treatments. I am not going to share more of his story because of privacy.
They are both doing really well now. I am knocking on wood as I type this.
Then somewhere in the mix of this, I got diagnosed with PANS. I never had strep throat as a kid, but we think I was incredibly streppy. Yes, streppy is a not word. I had impetigo often, I had ear infections constantly, and for years off and on, I would get this the post-strep peeling hands and feet. There were times my handwriting was illegible, had separation anxiety, and extremely mild OCD. If I were growing up today, I am sure I would not be diagnosed with PANS because my symptoms were so mild and not disruptive although they were sudden onset. But what happened to me, as an adult was not so mild. I had, unbeknownst to me, chronic infection and inflammation in my ear due to a tumor growing in my ear and into my brain area. I became markedly anxious, I would not leave my house except under extreme duress and had to write out a full outing plan, everything had to be “just right”, had overestimation of responsibility so with any bad thought, I was sure it would karmically cause someone’s death, and I had absolute intolerance of uncertainty. During that time, I was extremely productive on projects that I was working on for the PANS community. So I kept telling myself, oh don’t be ridiculous, you don’t have PANS, you are just looking for the symptoms because you are writing about them all day and you are just anxious, lots of people’s anxieties get worse as they get older. Then I got extended prescription antibiotics and steroids for my ear issues to get rid of as much infection as possible before surgery. And you can guess what happened, every symptom went away for the most part; I am not quite back to baseline. I went through all my history and recent events with the doctor, and she said that this was very clearly PANS. I still have anxiety and the same Pure O obsessional thoughts (I have zero physical compulsions), but my baseline is not “normal” (although manageable) because I went medically untreated for so long and I need some CBT or something more focused on these specific issues. This is really hard for me to put out publically, but I think I would be remiss in not doing so. I believe in ending the stigma against mental health issues too much to not admit that I struggle. I believe too much in advocating for PANS patients and working on getting better care for all these people living with PANS. I also want to help give a voice to the adults with PANS.
Thank god for doctors, who believe in not closing the doors on you, who continue to ask questions and do not get boxed into one set of beliefs. We need more. I have faith that slowly but surely they will come. It can be a hard road for these patients and our entire families. Some kids will do tremendously better. Some will do it quickly. Some will do it slowly. Some kids might never get their health back fully. I shoot for the stars but will take a few inches. Every inch towards improving quality of life has been worth it; hard-fought but worth it. Don’t lose perseverance. Don’t lose hope.