When you hear the word “panda” do you think of the cute little black and white animal or do you cringe in panic? If it’s the latter,then maybe you’re like me and have some experience with PANDAS or PANS, a disorder that affects children of all ages and causes behavior, emotional, mental, and physical challenges including tics/debilitating OCD/anger and rage.This disorder has turned my world and my family’s world upside down. I have not been able to write about it until now nor have I spoken about it to many people. But now it is time to tell the story about our journey with PANDAS/PANS. This debilitating disorder will be featured on 20/20 tonight. If you're not familiar with this disorder that attacks so many children please read on. Information is power and perhaps you can help a family get the help they need to diagnose their child.
It all started the summer of 2012, the year Michael turned 9. At the beginning of August my happy-go-lucky child became angry, tired, and depressed, and began hitting himself in the head. Nothing seemed to have triggered this behavior, although he was suffering from extreme allergies at the time – runny nose, swollen eyes, sneezing. Even he couldn’t tell us the reasoning behind it, just that he was very sad. It was very scary.
Upon the recommendation of our pediatrician Michael started seeing a psychologist. He talked with her about school and friendships but even she couldn’t get him to open up about his feelings of low self-worth. We began seeing a homeopath, for I had seen miracles happen from this type of “energy” medicine (I had used homeopathy to heal my own allergies). Between the visits to the psychologist and the homeopathic medicine we saw a big improvement in Michael’s mood by the middle of fall. He wasn’t having suicidal thoughts anymore but he still struggled with issues of self-worth and self-esteem, and he became an extreme perfectionist out of nowhere. Irrational fears of ants and blueberries appeared, sometimes sending him into a panic attack when he encountered them. As his parent I was continually stuck in panic or dread or worry myself, and spent countless hours researching, desperate to get my happy, worry-free child back.
Over the next year our house passed around a lot of illness: I was ill with chronic fatigue caused by Epstein Barr Virus and a host of other viruses, strep throat, and various flu bugs. At the time I was amazed at how well Michael fought these all off. He rarely got sick and when he did he might be down for only 24 hours. What he did begin to suffer from, however, was a lot of weird, unrelated symptoms, like severe gas pains and lower abdominal pain, strange one-day fevers, pains in his knees and lower legs (that were not growing pains) and a lot of emotional lability.
The summer of 2013 Michael returned from a week at Boy Scout camp tired and depressed again and filled with what seemed to be allergic inflammation. At a trip to the pediatrician our doctor suggested that Michael might have PANDAS or PANS, something I’d never heard of before.
PANDAS stands for Pediatric Autoimmune Neurological Disorders Associated with Streptococcal Infections. It's a disorder that causes behavioral changes due to a strep infection gone awry. In a normal child with strep the immune system produces antibodies to protect itself and fight off the infection. In a child with PANDAS, the antibodies see the immune system as foreign and attack the child's body and brain instead, causing high amounts of inflammation and a myriad of symptoms such as obsessions, compulsions, and tics. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) occurs when a trigger other than strep (such as an infection or allergic reaction to something in the environment) causes symptoms, such as abrupt-onset OCD, anxiety, emotional lability, aggression, behavioral regression, deterioration in school performance, sleep disturbances, and sensory sensitivities (from www.Pandasnetwork.org).
At the time it was a relatively new disorder but our doctor knew of a pediatric immunologist that might be able to help. After meeting with us and reviewing Michael’s history this doctor told us he didn't think Michael had PANDAS because he didn't have any OCD or tics that so commonly present as PANDAS symptoms, nor did he have a history of strep infection. Instead he thought it might be a sleep disorder. So he prescribed a sleep study, the results of which pointed to a mild sleep apnea. We were then referred to an ENT specialist, who concluded that Michael didn’t have sleep apnea and his tonsils were fine but perhaps we should look into thyroid. After another visit to our pediatrician and some more bloodwork we were back to square one as the thyroid was fine.
It was like this for the next several years, swinging from referral to referral as strange physical manifestations came and went. The turning point came when Michael turned 11 and received a DTAP vaccination at his physical. Two days later he was in the kitchen getting ready for karate and he began making strange movements in threes. He would clap his hands three times, step three times and then repeat a statement three times. His pupils were dilated and his eyes were glassy.
We then turned to another doctor - a pediatric neurologist, who also ruled out PANDAS (again, because Michael didn't have any OCD or tics) but suggested autoimmune encephalitis was the cause. Because Michael's symptoms fluctuated so much and didn't cause any "major" detriments to his daily life, the doctor didn't want to prescribe any treatment unless we saw a worsening of symptoms.
I had always thought Michael had a good immune system because whenever he got sick he was well within 24 hours. What I didn't know at the time was that while his body was fighting the illness, the brain and nervous system were putting up a bigger fight. As a parent I knew there was something that wasn't right and while I felt defeated that all of these "expert" doctors couldn't figure out what was wrong I knew it was time to seek a more holistic approach.
At this time our pediatrician diagnosed Michael with anxiety. She was just starting a separate wellness program that used yoga, nutrition, massage and mindfulness to help calm and retrain the nervous system and lessen inflammation. It was a year-long program and involved lots of appointments and commitment from both Michael and myself. We saw many results from it, in particularly an extreme handwriting change, but when it was over Michael (now a 7th grader) wanted nothing more to do with doing the yoga exercises or the meditations.
And so I let it drop. I was dealing with my own healing crisis, the fluctuating flares of a chronic Epstein Barr Virus infection. He was involved in band at school and seemed to be thriving, although he kept having issues with friends and the increased homework of 7th grade was really stressing him out.
During the summer of 7th grade he was chosen to attend a week-long outdoors camp with select boys from his school. It was a great experience and he came out of it happier than I'd seen him in a long time, but also with a physical relapse - he was so inflamed with what we thought at the time were allergies from being outside. We treated it with homeopathy and herbs and eventually it subsided, at least on the outside. What I was to eventually learn was that his brain was still very much on fire.
That fall he started 8th grade. He seemed to be in a good place and so I took an outside job for the first time since I had become a mom. It was temporary - slated only to last for 8-10 weeks - but it was the first time in a long while that I'd had something other than the kids or my writing to focus on. The job went well and so did life outside the job - somehow I managed to pull off working, making lunches, planning meals, doing laundry, and keeping the house tidy. The boys spent a lot of time alone after school and seemed to relish having some independent time, but looking back I suspect that the sudden change was too stressful for Michael.
A few weeks before Christmas, Just as my job was ending, my mom got very sick with pancreatitis and ended up in the ICU. It was touch and go for a few weeks and I was suddenly not at all available for my family, spending every moment when I wasn't sleeping at the hospital. The boys weren't allowed to see their grandmother, nor was their grandfather available to spend time with them. So all of a sudden three of the people the boys spent a lot of time with went AWOL. Looking back I'm sure the boys picked up on my fears about the seriousness of my mom's situation and had built up quite a bit of stress themselves. I normally have a good gage on their emotional state and we talk about what's going on, but I just didn't have the time or energy.
The good news is that my mom got well and was home by New Years' Eve. However, not everyone came out of the situation unscathed. A few weeks into the new year I noticed Michael's hands were red and scaly up to his wrist. I asked him about it and he admitted he'd been washing them a lot ever since Christmas because he was afraid of being contaminated by his younger brother, who at the time was 10. When asked what the contaminant was Michael could never say, but would adamantly refuse to touch his brother or anything his brother touched, or even sit anywhere his brother sat. He wouldn't even use the same bathroom. This made life very difficult and very scary for everyone in the household. Tensions were at an all-time high. Physical issues we could deal with because we had experience with them but this new mental invader of OCD was totally out of our wheelhouse - it was irrational and thus you couldn't deal with it as such.
Our son was changing yet again in front of our eyes and I had to wonder if what we were seeing was PANDAS, despite what all the doctors and specialists had said. After another visit to our pediatrician, who also suspected the same thing, we returned to the pediatric immunologist we had seen several years before. By the time we were able to see him Michael had been in art therapy for several months and was working on strategies to work through the OCD and contamination fears. I felt like it was helping. So, when the doctor told me yet again that he didn't think it was PANDAS because he wasn't stuck in a constant state of OCD and that it seemed like the OCD was getting better, I felt relieved. I didn't want to believe it was PANDAS. I had been browsing the PANDAS Facebook sites and reading the stories of other parents whose children had PANDAS, all of whom seemed worse off than Michael. I didn't like the thought of having to treat Michael with long-term antibiotics or subject him to plasmapheresis or IVIG, the touted treatments for PANDAS that didn't always seem to be the magic cure.
Even though the doctor didn't think Michael had PANDAS he was concerned about the high levels of inflammation in his body, the one constant thing Michael had had going for him for the past several years. And so we had more bloodwork done to compare it to previous results. I waited and waited for the office to call me and called multiple times to get the results myself but no one ever called me back.
In the meantime, Michael's condition worsened, brought on by stress. It was the end of 8th grade and he became an emotional mess. In a two-week span he had end of the year tests, band festival, and try outs for high school band. So it shouldn't have surprised me when I received a phone call from the office telling me that during a written portion of a test Michael had melted down and cried in front of his peers, an occurrence that was happening with more and more frequency.
Soon after school was out Michael caught what we thought was a cold. He was sniffly and had a constant cough that wouldn't go away. It was still there at the end of the summer when we FINALLY got in to see the pediatric immunologist. He apologized for blowing us off and went right to work in explaining the results of the bloodwork that he had done 4 months prior. The inflammation levels hadn't changed much and now he was concerned about the cough being due to mycoplasma pneumonia bacteria, a trigger of PANS. He wasn't ready to diagnose PANS just yet - he wanted to do a PET scan of Michael's brain to see where all the inflammation really was.
And so we waited some more while he and his office tried to find the funds for the test. I was getting tired of being patient but Michael seemed to be acting and feeling better so I stayed content with continual research of all things neurological.
Then the first panic attack hit. It was the week before high school and he was getting ready for his first marching band practice. All of a sudden he came into my room crying and working himself into a frenzy. I had seen this behavior many times before, especially when he was stressed out about doing something new. But this time he was literally frozen in fear. He couldn't move, couldn't sit down, could only yell and scream and cry. All I could do was talk him through it in a calm voice (even though I certainly didn't feel calm at the time!). Little by little I got him to move until he could sit down on the bed next to me. It was exhausting for both of us.
It was a rough couple weeks but once he got through the newness of marching band and high school and fell into a daily rhythm things calmed down. I knew we had moved into new territory though and couldn't wait to get that PET scan to see what it showed and to get Michael on some sort of treatment plan. I just wanted my happy-go-lucky child back, free of stress, anxiety, and inner pain.
Throughout October I called frequently to check on the status of the PET scan. The immunologist's office kept telling me they were still waiting on paperwork but it looked like it was going to happen. They gave me crumbs of hope and I kept waiting.
Finally in November I got my answer but it wasn't the one I had been hoping for. The office called to tell me they weren't able to get the funds for the PET scan after all and the doctor said he didn't know what else he could do for Michael. I was crushed, rejected by this doctor I had placed all our hopes on. Now what?
I was still dealing with that rejection when everything changed. Michael started a swimming unit in gym and was exposed daily to chlorine, a known inflammatory agent for PANDAS kids. He started having a severe uptake in OCD symptoms and his contamination fears grew - now they weren't fears about his brother, he was afraid of being contaminated by his peers at school. He refused to use the bathrooms at school and created a device made out of folders to put over his desk to keep himself from being contaminated. He was being taken over by pure irrational thought and I felt utterly helpless as I watched him struggle. He started wanting to stay home from school and it was all we could do to get him there every day.
Then one morning after Thanksgiving break he got stuck again. He couldn't move from where he was standing in the kitchen with his backpack on. Desperate we pleaded and prodded but he just couldn't move, nor could he break away from the contamination loop in his head that said school was a dangerous place. I knew that you can't reason with OCD but I certainly tried. I could see in his eyes that he was frantic and scared inside and that was heartbreaking. He didn't want to be like this but he just couldn't help it. He didn't feel safe at school nor did he feel safe at home or in his own body.
I had made an appointment in December with his pediatrician after I received the news that we wouldn't be moving forward with the immunologist. Now I realized we were in emergency mode and so I made an appointment with her for the following day. Michael rarely complains of feeling physically unwell but the morning of his appointment he complained of a scratchy sore throat. I have to admit I was sort of elated at the prospect that perhaps it could be strep because then a diagnosis of PANDAS could be made and we could get him on antibiotics and see if they would make a difference.
The doctor did a strep test as well as prescribed bloodwork to check inflammation levels. She felt his glands were a little swollen so she also tested for mono. When the bloodwork results came in a few days later mono was confirmed. But that didn't explain his behavior. And since the only treatment for mono is rest and fluids, I was again back to square one with nothing to treat his behavioral, mental and emotional state. I knew I needed some new options. I reached out to a Michigan PANDAS Facebook group and received several referrals to physicians that would be able to diagnose and treat PANDAS, if that was indeed the root cause of his issues. I called one of the doctors, a highly revered and recommended functional neurologist, and was told the very earliest appointment was one month away, in early January. I didn't want to wait that long but made the appointment anyway. Then I went to Plan B. Prayer. I prayed long and hard for help in finding the right and perfect doctor who could help Michael and get him in ASAP. Our family homeopath was dealing with a crisis of her own and couldn't help us so I searched the internet to see if I could find someone else. Anyone who could help my son. My prayers were answered immediately. One of my internet searches listed a homeopathic/naturopathic doctor not too far from our home who specialized in treating PANDAS/PANS. When I called to find out more I was elated when he told me he had a cancellation and could get Michael in the following day. Hallelujah!! We spent two hours with him detailing Michael's life over the past 6 years. When all was said and done we had a diagnosis (yes it was PANDAS/PANS) and a plan. Dr. S prescribed a homeopathic remedy that was perfect for Michael as well as some supplements that would help to naturally treat his active mono infection (berberine complex) as well as reduce the inflammation and help with the OCD symptoms (NAC, Omega 3, probiotic). He also suggested Michael go gluten/dairy/sugar free to help calm the inflammation. For the first time in a long time I left a doctor's office feeling positive about the future. I could see a ray of light shining through a dark tunnel of fear and hopelessness. And the treatment started really helping Michael. Every day we saw improvement. As we shared Michael's story with his high school counselor and teachers we were met with compassion and grace, not judgement or ridicule, which was a true blessing. As January approached I struggled with whether or not to cancel Michael's appointment with the functional neurologist. As the mono healed, Michael was beginning to feel better both physically and mentally but I still felt like we were walking on eggshells - never knowing what could set Michael off. My mom encouraged me to get a second opinion and so I kept the appointment. After listening to our story he was quick to tell us that yes it was PANDAS/PANS, and the treatment he recommended was a three-month course of antibiotics and antivirals and the addition of 5htp, a supplement he recommended to help with sleep and anxiety. Even though we were already treating Michael naturally and even though I had a not-so-great experience using antivirals to treat a past EBV infection, I didn’t want to leave any stone unturned so I filled the prescriptions. My husband had been out of town since the day after Christmas and was scheduled to be gone for the next several months so it was up to me to take on the role of single mom/physician/mental health specialist. After three weeks of the antivirals and antibiotics Michael started getting worse. He started having sleep issues and his anxiety was ramping up again. He started not wanting to go to school. He told us that he couldn’t play his bassoon in band anymore because he was overly sensitive to the noises. In a moment of emotion he revealed that all he did during band was sit there with his hands over his ears. Where I was once concerned that his peers would reject him and he would be bullied because of his OCD quirks and his emotional lability and all the stuff he had to do to make it through the day, now I was concerned that he might not even be able to make it to school, that this disorder was taking over his life so much that he would have to stay home. I wondered if the antibiotics, antivirals, or 5htp were causing him to have an uptake in symptoms. I called the neurologist, who told me Michael needed to stay on the antibiotics and antivirals to kill the bugs. He then told me he wanted to prescribe an antiseizure/antipsychotic medication (Abilify) temporarily to help with OCD, anxiety, depression, tics, and to reduce his hypersensitivity to sounds. Now my internal alarm was going off like the robot in Lost in Space “Warning, warning...” He wanted to prescribe medication to counteract symptoms I knew were the result of another medication? And this medication would have its own set of symptoms it could cause too, like obesity or involuntary movements. That did not set well with me. I researched Abilify and reached out to PANDAS parents who had experience with Abilify. I reached out to Michael’s pediatrician and Dr. S. The feedback I received was not positive so it wasn’t too difficult to decide not to put Michael on the medication. With the approval of Dr. S I took Michael off the antivirals and the 5htp and saw a pretty immediate improvement in his mood and behavior and sleep patterns. Dr. S recommended adding skullcap tincture to his regimen to help with anxiety and when Michael took it it worked like a charm. I felt like we’d missed a big bullet in deciding not to take the Abilify. Even though my confidence in the neurologist was shaken after this we still returned for a checkup and follow-up bloodwork when Michael finished his three months of antibiotic therapy. This particular visit to the bloodwork lab required him to give 21 vials! And he didn’t even pass out. It sounds like a lot of blood and it was, but it was helpful in getting a good overall picture of what is really going on (or not going on) in Michael’s body. We learned that he doesn’t have Lyme disease or candida or celiac. We learned that the cause of the PANDAS/PANS-related inflammation is due to mycoplasma pneumonia and strep antibodies and a myriad of viruses including Epstein Barr virus. While we waited for our next appointment at the neurologist’s office we had an appointment with Dr. S, in which he changed Michael’s homeopathic remedy. Michael had been doing really well before this appointment but the change after was short of miraculous. Michael admitted he had been conflicted about continuing to take band – he just wasn’t enjoying it anymore but didn’t want to disappoint anyone by quitting. His real love was art and because of band he didn’t have much wiggle room to take art classes. Once we told him that we would love him no matter what he did and that he needed to make decisions based on what he wanted to do and not on what he thought other people wanted for him, he was able to make a decision that was right for him. He quit band with confidence and was able to fit an art class into his schedule. So by the time our neurologist appointment came around at the end of March Michael had been on an upswing for a few weeks. The OCD behaviors were starting to lessen, he wasn’t so tired anymore, and for the first time in a long time he was smiling and there was joy and confidence in his voice. So when the doctor told us a second round of antibiotics was warranted to help attack the mycoplasma I felt confident in my decision to not have Michael take it, to have faith in the plan Dr. S had set out for us. After all, it was working – we were getting our son back! Currently our story has a happy ending. In the past few months, we learned some of Michael’s inflammation numbers have gone down a little but his mycoplasma numbers are still pretty high. So now we have added a new herbal remedy designed specifically to treat mycoplasma. Fingers crossed!! Michael turned 15 in June and is on his way to becoming a normal teen. I feel pretty confident that he is really on his way to being fully healed. He is now able to use public bathrooms, doesn’t think his brother is contaminated anymore, and is reaching out to friends and trying to be social again, something he hadn’t done since October. Taking back his own power and choosing art over music was so instrumental (no pun intended) in his healing! For the moment, we can breathe again. And if and when there is a flare, which often occurs when he is around someone who is sick or when he is stressed, we have a plan in place, we have tools in our toolbox.
I know our journey has not been as severe as many other PANDAS/PANS children and I am thankful for that, but it has certainly not been easy and it has left a lot of scars. There are so many families dealing with this disorder who have to make decisions they never thought they would have to make for their child, like having to put their daughter on an antipsychotic medication at age 6 or to place their son in the hospital so his blood can be filtered and transfused. All the decisions I made for my son may not be the same choices another family would make for their child and vice versa. But I don’t judge them as I hope they don’t judge me. We are all trying to find solutions. In the PANDAS world it truly does take a village and I am thankful for all the support I have received along the way, from friends and family to doctors and therapists and counselors and teachers and the whole PANDAS/PANS community on Facebook.
I would never wish this disorder on another child or family but I certainly have learned a lot through this journey and I think Michael has too. I have learned to be strong for myself and for my children, to be a mama bear who won’t quit looking for answers, and to never take no for an answer. I have learned that hope and prayer and faith are sometimes the best tools we have and to never discount my internal gut feelings. As much as this has disrupted Michael’s life I do have to commend him for being so strong. He’s had to sit through countless doctors’ visits and hear me recount his story again and again, not to mention suffering through fearful, irrational thoughts and behaviors all while expected to put on a brave face and continue going to school and taking part in after school activities. I share this story in the hopes that a parent who feels the tug of her intuition telling her something isn’t quite right with her child will maybe be able to put the pieces together quicker than I did and don’t have to wait 6 years or more for a diagnosis and treatment. I am not a doctor (although I certainly felt like one as I researched and asked questions and interviewed specialist after specialist) and don’t present this information for others to use as medical treatment or advice. However, PANDAS/PANS is relatively new and many doctors dismiss it as a disorder, so I urge you to question your doctors and do your own research if you feel you aren’t getting the answers you need.
For more information about PANDAS/PANS, go to www.pandasnetwork.org
Then one morning after Thanksgiving break he got stuck again. He couldn't move from where he was standing in the kitchen with his backpack on. Desperate we pleaded and prodded but he just couldn't move, nor could he break away from the contamination loop in his head that said school was a dangerous place. I knew that you can't reason with OCD but I certainly tried. I could see in his eyes that he was frantic and scared inside and that was heartbreaking. He didn't want to be like this but he just couldn't help it. He didn't feel safe at school nor did he feel safe at home or in his own body.
I had made an appointment in December with his pediatrician after I received the news that we wouldn't be moving forward with the immunologist. Now I realized we were in emergency mode and so I made an appointment with her for the following day. Michael rarely complains of feeling physically unwell but the morning of his appointment he complained of a scratchy sore throat. I have to admit I was sort of elated at the prospect that perhaps it could be strep because then a diagnosis of PANDAS could be made and we could get him on antibiotics and see if they would make a difference.
The doctor did a strep test as well as prescribed bloodwork to check inflammation levels. She felt his glands were a little swollen so she also tested for mono. When the bloodwork results came in a few days later mono was confirmed. But that didn't explain his behavior. And since the only treatment for mono is rest and fluids, I was again back to square one with nothing to treat his behavioral, mental and emotional state. I knew I needed some new options. I reached out to a Michigan PANDAS Facebook group and received several referrals to physicians that would be able to diagnose and treat PANDAS, if that was indeed the root cause of his issues. I called one of the doctors, a highly revered and recommended functional neurologist, and was told the very earliest appointment was one month away, in early January. I didn't want to wait that long but made the appointment anyway. Then I went to Plan B. Prayer. I prayed long and hard for help in finding the right and perfect doctor who could help Michael and get him in ASAP. Our family homeopath was dealing with a crisis of her own and couldn't help us so I searched the internet to see if I could find someone else. Anyone who could help my son. My prayers were answered immediately. One of my internet searches listed a homeopathic/naturopathic doctor not too far from our home who specialized in treating PANDAS/PANS. When I called to find out more I was elated when he told me he had a cancellation and could get Michael in the following day. Hallelujah!! We spent two hours with him detailing Michael's life over the past 6 years. When all was said and done we had a diagnosis (yes it was PANDAS/PANS) and a plan. Dr. S prescribed a homeopathic remedy that was perfect for Michael as well as some supplements that would help to naturally treat his active mono infection (berberine complex) as well as reduce the inflammation and help with the OCD symptoms (NAC, Omega 3, probiotic). He also suggested Michael go gluten/dairy/sugar free to help calm the inflammation. For the first time in a long time I left a doctor's office feeling positive about the future. I could see a ray of light shining through a dark tunnel of fear and hopelessness. And the treatment started really helping Michael. Every day we saw improvement. As we shared Michael's story with his high school counselor and teachers we were met with compassion and grace, not judgement or ridicule, which was a true blessing. As January approached I struggled with whether or not to cancel Michael's appointment with the functional neurologist. As the mono healed, Michael was beginning to feel better both physically and mentally but I still felt like we were walking on eggshells - never knowing what could set Michael off. My mom encouraged me to get a second opinion and so I kept the appointment. After listening to our story he was quick to tell us that yes it was PANDAS/PANS, and the treatment he recommended was a three-month course of antibiotics and antivirals and the addition of 5htp, a supplement he recommended to help with sleep and anxiety. Even though we were already treating Michael naturally and even though I had a not-so-great experience using antivirals to treat a past EBV infection, I didn’t want to leave any stone unturned so I filled the prescriptions. My husband had been out of town since the day after Christmas and was scheduled to be gone for the next several months so it was up to me to take on the role of single mom/physician/mental health specialist. After three weeks of the antivirals and antibiotics Michael started getting worse. He started having sleep issues and his anxiety was ramping up again. He started not wanting to go to school. He told us that he couldn’t play his bassoon in band anymore because he was overly sensitive to the noises. In a moment of emotion he revealed that all he did during band was sit there with his hands over his ears. Where I was once concerned that his peers would reject him and he would be bullied because of his OCD quirks and his emotional lability and all the stuff he had to do to make it through the day, now I was concerned that he might not even be able to make it to school, that this disorder was taking over his life so much that he would have to stay home. I wondered if the antibiotics, antivirals, or 5htp were causing him to have an uptake in symptoms. I called the neurologist, who told me Michael needed to stay on the antibiotics and antivirals to kill the bugs. He then told me he wanted to prescribe an antiseizure/antipsychotic medication (Abilify) temporarily to help with OCD, anxiety, depression, tics, and to reduce his hypersensitivity to sounds. Now my internal alarm was going off like the robot in Lost in Space “Warning, warning...” He wanted to prescribe medication to counteract symptoms I knew were the result of another medication? And this medication would have its own set of symptoms it could cause too, like obesity or involuntary movements. That did not set well with me. I researched Abilify and reached out to PANDAS parents who had experience with Abilify. I reached out to Michael’s pediatrician and Dr. S. The feedback I received was not positive so it wasn’t too difficult to decide not to put Michael on the medication. With the approval of Dr. S I took Michael off the antivirals and the 5htp and saw a pretty immediate improvement in his mood and behavior and sleep patterns. Dr. S recommended adding skullcap tincture to his regimen to help with anxiety and when Michael took it it worked like a charm. I felt like we’d missed a big bullet in deciding not to take the Abilify. Even though my confidence in the neurologist was shaken after this we still returned for a checkup and follow-up bloodwork when Michael finished his three months of antibiotic therapy. This particular visit to the bloodwork lab required him to give 21 vials! And he didn’t even pass out. It sounds like a lot of blood and it was, but it was helpful in getting a good overall picture of what is really going on (or not going on) in Michael’s body. We learned that he doesn’t have Lyme disease or candida or celiac. We learned that the cause of the PANDAS/PANS-related inflammation is due to mycoplasma pneumonia and strep antibodies and a myriad of viruses including Epstein Barr virus. While we waited for our next appointment at the neurologist’s office we had an appointment with Dr. S, in which he changed Michael’s homeopathic remedy. Michael had been doing really well before this appointment but the change after was short of miraculous. Michael admitted he had been conflicted about continuing to take band – he just wasn’t enjoying it anymore but didn’t want to disappoint anyone by quitting. His real love was art and because of band he didn’t have much wiggle room to take art classes. Once we told him that we would love him no matter what he did and that he needed to make decisions based on what he wanted to do and not on what he thought other people wanted for him, he was able to make a decision that was right for him. He quit band with confidence and was able to fit an art class into his schedule. So by the time our neurologist appointment came around at the end of March Michael had been on an upswing for a few weeks. The OCD behaviors were starting to lessen, he wasn’t so tired anymore, and for the first time in a long time he was smiling and there was joy and confidence in his voice. So when the doctor told us a second round of antibiotics was warranted to help attack the mycoplasma I felt confident in my decision to not have Michael take it, to have faith in the plan Dr. S had set out for us. After all, it was working – we were getting our son back! Currently our story has a happy ending. In the past few months, we learned some of Michael’s inflammation numbers have gone down a little but his mycoplasma numbers are still pretty high. So now we have added a new herbal remedy designed specifically to treat mycoplasma. Fingers crossed!! Michael turned 15 in June and is on his way to becoming a normal teen. I feel pretty confident that he is really on his way to being fully healed. He is now able to use public bathrooms, doesn’t think his brother is contaminated anymore, and is reaching out to friends and trying to be social again, something he hadn’t done since October. Taking back his own power and choosing art over music was so instrumental (no pun intended) in his healing! For the moment, we can breathe again. And if and when there is a flare, which often occurs when he is around someone who is sick or when he is stressed, we have a plan in place, we have tools in our toolbox.
I know our journey has not been as severe as many other PANDAS/PANS children and I am thankful for that, but it has certainly not been easy and it has left a lot of scars. There are so many families dealing with this disorder who have to make decisions they never thought they would have to make for their child, like having to put their daughter on an antipsychotic medication at age 6 or to place their son in the hospital so his blood can be filtered and transfused. All the decisions I made for my son may not be the same choices another family would make for their child and vice versa. But I don’t judge them as I hope they don’t judge me. We are all trying to find solutions. In the PANDAS world it truly does take a village and I am thankful for all the support I have received along the way, from friends and family to doctors and therapists and counselors and teachers and the whole PANDAS/PANS community on Facebook.
I would never wish this disorder on another child or family but I certainly have learned a lot through this journey and I think Michael has too. I have learned to be strong for myself and for my children, to be a mama bear who won’t quit looking for answers, and to never take no for an answer. I have learned that hope and prayer and faith are sometimes the best tools we have and to never discount my internal gut feelings. As much as this has disrupted Michael’s life I do have to commend him for being so strong. He’s had to sit through countless doctors’ visits and hear me recount his story again and again, not to mention suffering through fearful, irrational thoughts and behaviors all while expected to put on a brave face and continue going to school and taking part in after school activities. I share this story in the hopes that a parent who feels the tug of her intuition telling her something isn’t quite right with her child will maybe be able to put the pieces together quicker than I did and don’t have to wait 6 years or more for a diagnosis and treatment. I am not a doctor (although I certainly felt like one as I researched and asked questions and interviewed specialist after specialist) and don’t present this information for others to use as medical treatment or advice. However, PANDAS/PANS is relatively new and many doctors dismiss it as a disorder, so I urge you to question your doctors and do your own research if you feel you aren’t getting the answers you need.
For more information about PANDAS/PANS, go to www.pandasnetwork.org
