PANS/PANDAS is horrible at its best. We would gladly suffer any fate ourselves, but instead we get to watch our children suffer. Doesn’t really get worse than that. This has devastated our family, but somehow, not sure how, we seem to be pulling our family out of our darkest time and seeing some semblance of light at the end of the tunnel.
This is how it happened. Never, in our wildest dreams or nightmares, did we think we would be telling this story, but first we want to thank all the MANY wonderful doctors who have helped us navigate this disorder and to those of you who don’t believe, we wish you the best, even though you ignored our pleas for help, our tears of devastation, and our years of torment.
Chapter 1. In the Beginning…
At the age of 5, just after starting kindergarten, our son started doing odd motions with his mouth. It appeared that he was trying to catch his breath, but when we asked, he said he didn’t realize that he was doing it. We showed a video of the movement to our pediatrician. She immediately said, “I think he has Tourette Syndrome,” and referred us to a neurologist at the local children’s hospital. After a year of waxing and waning tics, from eye rolling to humming and grunting, he was diagnosed with Tourette Syndrome. Over the next 5 years he had waxing and waning vocal and motor tics and various other odd symptoms which we attributed to Tourette Syndrome. Other random symptoms were a fear of chocking and a fear of food being poisoned, only eating foods of a certain color and he would panic if he heard Mom open the front door – he was convinced that she would disappear if she went outside. These symptoms were temporary and would fade just as abruptly as they had started. Our son was always an exceptionally bright and emotional child, and we assumed these were expected behaviors of a sensitive/ gifted child. We didn’t know any better, it was our first kid. Looking back, we now realize he was having PANDAS symptoms.
Chapter 2. WTF?!
Near the end of 5th grade, in 2015, he started to have severe anxiety and fears especially in Math where he was usually the top of his class. Even with these stressors, he successfully finished 5th grade. The summer was unremarkable and there seemed to be no issues at the time.
Unfortunately, in the Fall of 2015, within four weeks of the beginning of 6th grade, our son had a sudden onset and exacerbation of symptoms, lasting about two weeks. He was yelling words, have severe head and neck tics, and was having anxiety about going to class. We visited his neurologist who prescribed Guanfacine. We didn’t notice great improvement. In October, we convinced him to go on a school trip to sleep-away camp. That was the worst decision of out lives. At camp, he had a relapse of symptoms including anxiety, severe whole body tics, insomnia, and paranoia. But, the camp staff refused to acknowledge that he was in distress and ignored his pleas for help. On the second morning of his return home from camp, he started experiencing full blown PTSD symptoms. He had irrational fears of showering, going outdoors, doctors, nurses, teachers, large groups of people, even his best friend! There was a severe decline in math, reading, and writing, to the extent that he could not pick up a pencil or add one plus one. Even worse were the hallucinations. He was hearing voices. There were continuous rage attacks, extreme anxiety, dissociative events, OCD, ODD, and he was homebound for six months! These symptoms occurred daily with no breaks. We unenrolled him from school and started homeschooling. He thought teachers were going to come out of the computers or from behind posters on the wall. Homeschooling was a challenge. (At that point, we still didn’t know he had PANDAS).
We visited several neurologists and psychologists, and while he was hiding and screaming underneath their office tables, nobody could tell us what was wrong and couldn’t understand that this child had not been like this before. We told them over and over that he was the top of his class, one of only two kids who got into advanced math for middle school, sweet, loving, compassionate, empathetic, never mean or lashing out. The doctors talked about “hot feelings” and “cold feelings”, that we couldn’t let him have his way with everything. One doctor put him on Zoloft, which made him 100x worse. We told the doctor it was making him worse and that we needed to stop the Zoloft and he said, “It sounds like you need more, not less.” He said, we should “try outpatient hospitalization and if that doesn’t work than he’ll need inpatient treatment.” He diagnosed ADHD (over the phone) and put him on Intuniv, which made him have whole body seizure-like tics. The doctor wanted to try him on Risperidone, which he said, “works well for his patients with Tourette Syndrome.” We refused to give our son Risperidone after reading literature on all its possible side effects. We just knew that there was something being missed! (By the way, we found out later that this “neurologist” had a video and information about PANDAS on his website!!!)
Chapter 3. You’ve got to be kidding me!
In the spring of 2016, our daughter, then age 8, started having whining and grunting tics, sudden onset OCD and fears. We assumed that she also had Tourette Syndrome. It was starting to get difficult with her, but it also made it exponentially more difficult to treat our son. Her behaviors would trigger his symptoms. And there was no ramping up – she would have a tic or an OCD moment, and he would go into a dissociative event. At first, as she triggered him, he would be afraid of her, but at the same time she wanted him, and nothing else would console her. If she couldn’t find him, she would have a panic attack. Imagine that! She NEEDS him and he’s AFRAID of her! I don’t even know how we survived that except I remember sitting on the top of the staircase, crying, often. There was no way to get control of the situation. We have had a lot of low points, but this was one of the lowest. The only way to help her was to make him not be afraid of her. But that was easier said than done. Her symptoms lasted about a month and then subsided.
Chapter 4. Congratulations! It’s a PANDA.
March 2016, we had found a webpage about PANDAS. We went to the pediatrician because our son was having irregular fevers and we noticed a pattern. The fevers were causing severe whole body tics again. We told her about PANDAS and said all his symptoms fit. She was unable to do a throat culture or rapid strep test because he was hiding and screaming under the exam table. She said she would give us antibiotics because his symptoms and our suspicions were valid. Looking back, this may have been when he started feeling better and leaving the house more, but since he was already slowly improving over the past 6 months, we didn’t notice a drastic change.
The summer of 2016 was uneventful, however our son still had generalized anxiety, tics, and fears. Our daughter still had moderate OCD and occasional tics.
In the fall of 2016 we were happy to enroll our son back in school (with an IEP in place) so he could start living life again. After one week of school, I got a phone call from him stating that “something wasn’t right in my head”. I went to pick him up. He was coughing – a loud exaggerated cough. I thought maybe it was a new tic, but I wasn’t convinced. After a strep test at urgent care came back negative, a culture did come back positive for beta-hemolytic non-strep A. Even though it wasn’t Strep A, we knew that he had PANS/PANDAS. And so, it began! The very next day, he started having rage attacks, fears, anxiety, tics, OCD, etc. We were in a crisis once again, but we were so excited to finally have a path.
After a very thorough search, and being turned away by doctor after doctor, and hospital after hospital, we found an amazing immunologist who treated PANDAS. Over the next 5 months and multiple antibiotics the infection persisted. And, he would always test positive for strep A just a couple days after stopping the antibiotics. It wasn’t until 5 months later that we found an antibiotic that could get the infection under control. We had battled that infection and the severe subsequent neurologic symptoms from September until January. Finally, we were getting somewhere!
Chapter 5. Don’t get too comfortable.
By November 2016 our son was relatively stable. We finally had some sense of what was happening. We had a great doctor, a diagnosis, and even a little bit of hope. November 2nd, we were playing a board game. Our daughter had had a “cold” for a few days and was having mild tics, then suddenly, in an instant she erupts with OCD, paranoia, and severe complex tics! She was a mess! We took her to urgent care and she tests negative for strep. Strep was never an issue for her so we were not surprised. We immediately schedule her to see the same immunologist as our son. We test for all co-infections and found that her mycoplasma antibodies were off the charts. We treated with Azithromycin and saw improvement over a few weeks. Her symptoms start to subside and she even returned to school again.
After three months of waxing and waning symptoms, by January, we realized that there was a pattern. Her flares correlated to Mom’s menstrual cycle. We made detailed charts and month after month it was the same. It seemed that as her progesterone starts to drop, she has sudden onset of symptoms, and when her progesterone levels increased, her symptoms would stop. After some research, we found that progesterone decreased blood-brain barrier permeability. The blood-brain barrier is protected by progesterone and when it drops, the mycoplasma antibodies can more readily pass into the parenchyma of the brain and wreak havoc. We explain our hypothesis to her doctor who agreed and said that she needed IVIG as soon as possible!
In January, our daughter started to have panic attacks and was not able to leave for school, daily. She was placed on home hospital instruction alongside her brother, who had been on home hospital already for three months.
Chapter 6. Yay! We get to deal with an insurance company… the most noble and ethical of all corporations.
Our son started IVIG in December. We paid out-of-pocket for the first dose and demonstrated significant improvements to our insurance company: decreased tics, less anxiety and fear, improved handwriting, and lifted brain fog. Miraculously they approve him for 7 treatments. We tried to follow a similar course for our daughter. We started her on IVIG in January and paid out-of-pocket for the first dose, to demonstrate that it REALLY worked for her. And it did. OCD and anxiety stopped literally overnight. She saw improved cognition and a decrease in tics. Same dramatic improvements as we saw with her brother. But the Insurance company, the same insurance company, denied her further treatments.
We had to pay for two months of treatment out-of-pocket. But it was worth it – Our daughter returned to school happy with no fears, even showing up early rather than late most days. We were elated.
About the same time our son had to have a tonsillectomy. We had to rid him of the persistent infection that was continuously triggering his immune system. Only then would IVIG be able accomplish its task completely. At first, insurance denied the tonsillectomy, saying it wasn’t medically necessary. Our ENT had a peer to peer and they finally agreed that it was necessary. He healed well from surgery and had his first post-surgery IVIG on May 15 and 16 2017.
Chapter 7. But wait… there’s more.
Despite demonstrating our daughter’s significant improvement, and having approved coverage for our son for the exact same diagnosis and treatment, the insurance company continues to deny coverage for our daughter. We have paid for four treatments out-of-pocket! The home infusion company that we used initially was amazing! If we could, we would nominate their nurse for sainthood! But the insurance company insisted that we switch to an in-network home infusion company. We made the chaotic switch, but then they still denied coverage for our daughter.
The switch also caused an inordinate amount of anxiety for our daughter. She didn’t like the nurse, and frankly, neither did we. The nurse couldn’t hit a vein no matter what. Our old nurse could do it in one stick. Even after our daughter gathered her courage to sit patiently despite her growing fear and overwhelming anxiety (which are the root of her condition), allowing the nurse to stick her up to four times per visit, the nurse could still not hit a vein. Subsequently our daughter missed several does of IVIG and had relapsed. Additionally, instead of owning up to the fact that the nurse was incompetent, the company has now declined further service for our daughter. Fortunately, our son has had success with other nurses in this company, but since they refuse service for our daughter, we are left high and dry. Remember the insurance company made us switch….
Since she missed doses, our daughter finished fourth grade back on home hospital. The school was understanding enough to allow her to finish a few weeks early, since she really couldn’t accomplish anything in her state. It was quite sad. She is a social butterfly, loves her teachers, her friends, and her school – but she could not be there at the end after such a trying year.
Our son on the other hand, finished 7th grade. It was a lot like pulling teeth, but somehow, he squeaked by with all A’s. From not being able to add two plus two and thinking that the teachers were going to come out of the computer and kill him a year ago, to straight A’s. Not too shabby.
Chapter 8. I can’t even think of a name for this one.
The crazy thing about this disease is that you can never stop and relax. When things calm down, that’s the time to fix the messes from before while preparing for the next crisis. It’s not a question of if, but when will shit hit the fan again.
So, having been denied by our insurance company, we decided that we did not have time to wait on the appeal process for our daughter’s IVIG treatments. And since we were going to pay out of pocket, we decided to return to our original infusion company. The IVIG was a success. We also decided to check with another PANS/PANDAS doctor who we thought would bring a more experienced perspective on this disorder. She recommend a higher dosage of IVIG (we were only doing 1.1g/ kg with our immunologist), more tests, and suggested that we put our daughter on medication for a possible yeast infection in her gut. And it worked!!! Her symptoms started to improve, only after a major die-off reaction, and she started to feel better.
So here we sit, petrified. Afraid to jinx it… afraid that the good times won’t last, because they rarely do. At times that seems to be the hardest part, letting your guard down for a bit – it just sucks so much more when the drama starts up again. And like countless other PANDAS parents we wait, walking on eggshells, dreading the next flare while desperately trying to give our children something resembling a normal life. Going to bed, going outside, or going to camp in the summer, things that are, for most people, mildly challenging seem like Herculean effort for PANDAS families.
The irony is that we consider ourselves lucky in all this. We did not believe the neurologists and psychologists. Usually, children with these symptoms are prescribed psychiatric medication, as ours were, which only serve to exacerbate their conditions. This is then followed by more meds, and inevitably the children are lost down a rabbit hole of psychiatry and neuropharmacology. We avoided the psych meds., sparing our children from the lifetime of hell that comes with a true psychiatric diagnosis. And miraculously, after two years of hellacious anguish and seven years of misdiagnosis, we are somehow clawing our way out of the dark and treacherous hole, only to leave ourselves wallowing in the mud. Hopefully not permanently.
Out of necessity we are educating ourselves, becoming impromptu “experts” on this baffling disorder. This sucks. This really really sucks. But it could be worse. And we will figure this out. They’re our kids, our beautiful, brilliant, kids who suffer a medical condition doctors and insurance companies won’t admit exists. We’ll get through this because we don’t really have a choice – there’s no way that we’re going to give up on them. We’ll educate the doctors and the so-called experts and we’ll educate our communities, our friends, and our families. We’ll pressure the insurance companies, and we’ll pass legislation if we have to. We’ll get this done.