My son was born 7 weeks premature. He was received both physical therapy (PT) and occupational therapy (OT) by the time he was four months old and gradually added Speech Therapy (ST) and Applied Behavioral Analysis (ABA). By the time he was 2 he was in therapy (ABA, OT, ST, PT) for 2 to 6 hours a day. Finally he was diagnosed with Autism and Intellectual Disability and told that traditional therapy would only do so much; we should not try so hard to get him better because it would not really change quality of life. And then doctors told me my other son had speech delays but not autism 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 the one with Autism was so sickly looking; he had a bloated belly, he had fingernails falling off from fungal infections, he had huge shiners under his eyes, he 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. So again I collapsed on the couch half the day and started a business the other half the day, anything to not focus on the grim prospect that my child was a lost cause. One day I finally realized that this was not good enough; I needed to find ways to improve quality of life for this child who was utterly non-responsive to me and no matter what the regular pediatrician said needed to be treated medically, Autism or not.
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 came back so high that one was done again because he had never seen a titer that high. We slowly treated him, one dietary change at a time, one supplement at a time, 40 dives in the HBOT, nebulized glutathione, one prescription antifungal or anti viral 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, who was clearly happy to see his family. It was a long road with a lot of work. It did not happen over night; it was a slow progress. 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 spring his brother got strep throat and I got an ear infection plus strep throat but he didn’t. 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 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 would become distraught when something was different; having speech at a different time, walking a different way to library, sitting next to a different kid in circle time. Physically he was also a mess: he started having a tic in his neck, had a huge, fiery red anal ring that would not go away with any yeast treatments, skin was peeling off his feet and hands, again no longer sleeping at all, stimming became intensely worse, and his hands shook constantly. As per a new DAN doctor, we increased his supplements including antioxidants, natural antibacterials, natural and prescriptive antifungals and probiotics. There was a minimal improvement, some days were better than others but he was not back to his baseline. 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 country to see this doctor who gave us hope.
DIAGNOSIS & TREATMENT
We sat in the doctor’s office. It was a good day. We had gotten there in one piece. My son was pretty happy. 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. So 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. His GI was not doing so well with lots of increased diarrhea but he had few herxing behaviors to speak of which he had a lot of during antifungal and antiviral treatments years before. Stopped the Azithromycin for two weeks and the tic came back. So back on the Azithromycin he went. Tic went away again. Added more GI supports. He was also on a few other new supplements. His cognition improved 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. We went out and had fun. I remember one day I walked into his classroom, he was in his aide’s arms and he turned to me with a huge smile and wanted me to hold him. He was about 6 years old and he had never ever done that. Every teacher in the room started to cry happy tears. They had thought I was crazy for taking him all the way across 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, that there were probably other kids in the classroom with PANDAS. That to me was better than baseline.
SUBSQUENT FLARES & TREATMENT
We continued to treat him for PANS for the next year and weaned him of antibiotics successfully. Then because life doesn’t run a simple path, we moved across 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 for a couple local pediatricians, none whose office seemed PANS literate. No parent I talked to knew of any pediatricians that were. 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 it seemed worse this time; maybe it was because I knew what it was. Food issues became more extreme. He wanted to eat constantly but finding a food he wanted to eat was difficult. He wanted rice and pretzels. He didn’t want other carbs so it wasn’t as if he only wanted carbs. He refused to swallow chicken. He would just hold it in his mouth and cry. He would swallow 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 but no longer would eat an apple if it were left whole. 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 sleep took hours. I met with the school and within a week’s time, all his goals that he had been steadily working on had fallen below baseline, way below baseline. He was suddenly un-teachable. His brother sobbed and sobbed because he was sure we would have to institutionalize this tiny child.
The same week, his brother who had lost any previous speech issues, no longer had an IEP, still had some learning but still very much on grade level, tanked too. I noticed he had peed 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 then his teacher called and said there is something wrong because he clearly and suddenly couldn’t do any arithmetic any longer.
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 I had another who although he did not have OCD or issues surrounding food, clearly had enough of the other neuropsychiatric symptoms associated with PANS for me to freak out. 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 him to two DAN doctors and one MAPS doctor. I gave lots of natural antibacterials, xylitol nasal spray, lots of probiotics and S. Boulardii, lots of enzymes, lots of antioxidants and anti-inflammatories, and lots of immune support. There was some herxing because I didn’t go slowly. But my neurotypical son quickly stopped peeing everywhere, stopped crying during homework, and his arithmetic skills returned. My son with autism is more fragile and the healing took a bit longer but the immediate crisis was over and within a few months he was back to being on track for meeting the goals in his IEP.
He had one flare the next fall but we repeated the same steps we had that spring and got him back. During that time, I had several back-to-back ear infections. The ENT thought the culprit was strep. So treated me with antibiotics that barely did anything. I started using a xylitol nasal spray every day, increased my probiotics and a few other supplements. I have not had an ear infection since. Guess who has not had a full PANS flare since for a year and a half?
This spring suddenly he was different again and in the start of the flare. This flare was different though; it was hard to put my finger on at first. He was not quite so desperate with anxiety, he would cry but not non-stop, there were no rages, there was no sign of perseveration escalating to OCD like before, he didn’t want to eat chicken but still would, but he really couldn’t get any school work done because he had zero attention span and he once again had severe sleep issues. Everyone in the house was really having bad spring allergies; Benedryl and Claritin didn’t really seem to do much. We gave him Quercetin and after the first dose, he slept every night, he paid attention again in school, and yes, he ate his chicken. But we could not miss a dose or he cried on and off all day and would not sleep. Once the trees stopped dropping pollen everywhere, we were able to stop giving it. We are starting back up with a MAPS doctor soon so we can run labs and see what else we can work on to keep up this progress and other ways we can improve his quality of life.
Thank god for doctors, who believe in not closing the doors on you, who continue to ask questions and 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 kids 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.
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