This is a tough post to write, but one I feel compelled to share (with my son Charlie’s permission) due to the extreme struggles we’ve been through and the lack of answers and experienced physicians out there treating kids like Charlie. I’ve alluded to some health issues going on at our house, but it really didn’t begin to touch on the hell we’ve been going through for a few months. Charlie is a smart, kind, sensitive, and creative kid. He’s funny and enjoys life. Or he did before this August.
Charlie has never been what you’d call laid back (he comes by it honestly 🙋🏼♀️) and has definitely shown signs of social and performance anxiety since he was 4 or 5. But a few months ago — almost overnight — he started to show some new behaviors. Extreme anxiety about things that might have bothered him only a little before. He became very irritable, controlling and often didn’t want to go do anything outside of the home. Then he started to fight us on leaving the house at all. By August we realized he had developed full blown Obsessive Compulsive Disorder. When we would push him to leave the house to go to a doctor’s appointment or swim class he started flying into rages, screaming, calling me names, and getting physically aggressive. With guidance from his pediatrician and therapist we started treating his OCD with an SSRI and Exposure Response Prevention (ERP) therapy, which is the gold standard treatment for OCD. At first he could participate in therapy, and then in school when we started the next week. By the following week he was showing a lot of hyperactivity and impulsivity at school (also a new behavior we had never seen before), and even more aggression and rage at home. His dose was increased. No improvement. Dose was increased again. Rage went through the roof. Things got really scary. We ended up at the ER and then admitted to Nationwide Children’s Hospital where they clinically diagnosed him with SSRI activation syndrome and discontinued his Prozac, switching to a new SSRI. They didn’t run any tests or labs. He had to wear a special color hospital gown which indicated mental issues and we had to have an aide in the room with us at all times. For two days and two nights. But while in the hospital his extreme hyperactivity continued. He was not himself at all. We started seeing a psychiatrist who took over his medication protocol and his therapist for ERP and behavior management. Things continued to steadily decline. I knew in my gut that something else was wrong. I could tell the meds weren’t helping and I was losing my sweet boy. I didn’t recognize him 80% of the time. His eyes were dead; he wasn’t there. I took on sorting him out as my full-time job. I listened to every podcast, read every article and text I could find, joined and searched posts in every OCD parent support group on Facebook. OCD consumed Charlie’s life and that of our whole family. But it was more than OCD — we just didn’t understand that yet.
Each week, and then each day, led to a steady decline in both his physical and mental health. He didn’t look well. He was pale and had dark circles under his eyes. He chewed and picked his lips till they bled. Then he started doing it to his ears till they bled. He still wasn’t responding to his meds and he developed extreme anxiety about going to school. Our therapist stressed the need to force him to go, because if you give in to OCD it allows it to get bigger. So we forced him. Some days we had to carry him to the car kicking and screaming and drive him and escort him in, and then a staff member escorted him to class. This was a kid who loved school last year so much he cried when I picked him up on the last day. He never got one bad behavior report all year. A month into school and I was getting one every day. Then I was being called to pick him up. And then he barely made it through two hours. By mid-October we had to put him on medically homebound instruction because he couldn’t make it through 10 minutes at a time without episodes and was having such extreme school anxiety and was feeling and looking bad physically. He was ill and I knew it in my mom gut.
In all of the research I had been doing I stumbled upon something called PANS/PANDAS. As I dug deeper I realized the more I read about it, the more I felt like I was reading what was happening with my son. If you’ve never heard of PANS/PANDAS you’re in the majority, so let me share a little bit about it.
PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANS is short for Pediatric Acute-onset Neuropsychiatric Syndrome. Both are really Autoimmune Encephalitis (which is swelling in the brain, usually of the basal ganglia), and vary based on the autoimmune trigger (strep for PANDAS and a variety of other bacterial, viral, or environmental triggers for PANS). All children with these disorders have acute onset of OCD symptoms and/or severe eating restrictions. But they also have a debilitating and baffling set of other neurological symptoms with similarly sudden onset. To be diagnosed with PANDAS/PANS they must have two of the following seven criteria:
- Separation anxiety, panic, other forms of anxiety
- Behavioral regression: Kids suddenly acting much younger than they should for their age, such as reverting to baby talk.
- Emotional lability: These children can be severely depressed, even suicidal
- Irritability, aggression and /or severely oppositional behaviors
- Deterioration in school performance: Sudden decline in math and/or reading competence, memory and concentration; increase in hyperactivity
- Motor or sensory abnormalities: Their handwriting and drawing deteriorates dramatically (also linked to regression), and they may be distressed by noise or light.
- Somatic symptoms: These include sleep disturbances, bedwetting and other changes in urinary frequency or intensity.
(For more info, go to pandasnetwork.org)
Besides the sudden onset of OCD, Charlie exhibited some form of every single criteria above. He didn’t just have two of the seven, he had all seven. So, his pediatrician must have diagnosed him and started treating him, right? His therapist and psychiatrist would question whether his behavior was truly a mental health issue and suggest looking into an underlying medical cause, right? Nope, and nope. Because we couldn’t report a recent illness, everyone brushed off my questions about P/P. In therapy I described what I was seeing to his therapist (who had been seeing him for a year to help with his anxiety and the transition from moving from LA to Columbus) and even though she was seeing behavior in her office that was very out of character for Charlie (bouncing off the walls, baby talk, climbing on furniture, turning the lights off and on, etc) she questioned my concerns in a very condescending manner and stressed that his behavior could be managed with behavior modifications: positive reinforcement, removing privileges, having consequences, etc. — all stuff we had used successfully in the past and with our other children, but things that did not work for Charlie because HE COULD NOT CONTROL THE BEHAVIOR. I think this was the most frustrating part — just seeing how little I was believed when it came to my child’s sudden changes and behavior. And trust me, there were so many frustrating things happening. Imagine your kid just completely disappearing, and there’s this new kid that you don’t know who is abusing the family with their words and actions. You have to walk on eggshells all the time, you can’t leave the house, your kid stops eating anything but smoothies and oatmeal. Taking care of your 8 year old becomes your full-time job, meanwhile you have two littler kids to care for as well. And your child goes from heartbreaking pain and sadness and just wanting to die to screaming and raging and destroying your family. It is a kind of hell I’d never wish on anyone.
I finally called my pediatrician’s office and, with the help from other moms who had already been through this and advised me, asked for some specific labs to put my mind to rest. Some of the things I was looking for were Strep, Epstein Bar Virus, HHV-6, a variety of other viruses, mycoplasma, and Lyme with co-infections. My pediatrician didn’t know what “co-infections” were, so he didn’t order them but I now know they include Babesia, Bartonella (cat scratch fever), Rocky Mountain Spotted Fever, and Anaplasma. Within days I learned that Charlie had antibodies showing both a past and current or recent infection (positive for both IGM and IGG antibodies) for mycoplasma (walking pneumonia). Though my pediatrician was unconcerned about this because Charlie wasn’t showing any active symptoms like a cough he caved on prescribing an antibiotic since we were seeing the PANS symptoms and, I think, just to get me to stop bothering him. In the days after we had the labs done but before we got the results I began an anti-inflammatory protocol to see if there would be any improvement. After one dose of Motrin we had a therapy appointment and for the first time in 6 weeks he could sit still, answer questions, and last for almost an hour before he could no longer control himself and the extreme hyperactivity started. At the same time I had a meeting with Charlie’s school on how we could best support him. We were all in agreement that full-time full days at school were not working. The stress and trauma of forcing him to school, only to have him struggle with these behavior episodes all day and not learn anything (not to mention disrupt everyone else’s learning and teaching) was pointless. We opted to do medically homebound instruction, where our district sends a teacher to our home for about 5 hours a week to teach Charlie one-on-one. So far, this is working much better for everyone, though on his good days Charlie expresses wishing he could go to school and missing the experience. We’re lucky to have had a Principal and support staff who were understanding of our situation and who knew and liked Charlie and realized this was not him — clearly something else was going on. While school districts are required by law to make accommodations for kids with disabilities (which in some cases includes medical conditions that prevent a child from being able to attend or participate in school) it is nice when you can tell your school is behind you and wants the best for your child. I know not everyone is so lucky.
A few days after the first positive infection result came back and we took Charlie out of school, we got a confirmed positive test (called Western Blot) for Lyme Disease. Charlie had never been bitten by a tick that we knew of and never had the classic “bullseye” rash. But he had Lyme. And it all started to make sense. The fatigue. The aches and pains. The stomach pains. The irritability. The PANS. HE HAD LYME. So surely now he received treatment, right? No again.
While we hear a lot about Lyme prevention, its diagnosis and treatment is still largely misunderstood. Our pediatrician said that tests for Lyme are notoriously unreliable and can create false positives. He wasn’t inclined to treat the Lyme since there was no known bite or rash. Despite all of these symptoms that would support a clinical diagnosis AND a positive Western Blot test, I still couldn’t get a friggin Lyme diagnosis. So I did what any good momma advocate would do — I took to the internet! I asked those mom support groups and joined ones for Lyme. I researched and researched. I learned that you have to find a Lyme Literate MD to properly diagnose and treat Lyme, because too many doctors don’t know enough. Which is fine — you don’t know what you don’t know. What I have a major problem with is when doctors don’t know something, but act as if because they don’t know it, that it isn’t a thing. If I can find out this information with a couple of hours of reading online (from reputable sources like LymeDisease.Org and PANDASNetwork.org then surely medical professionals can too. Or at the very least they can admit they don’t know and refer you to someone who does. Because I’m pretty sure that “do no harm” means don’t dismiss concerns and labs that indicate an illness just because you don’t know about, understand, or treat that illness. But what do I know: I’m just a mom on google, right? SMH.
So where are we now? Charlie is doing a little better each day. He is sometimes irritable and overstimulated in a lot of noise or chaos (like two very loud little brothers). He is still very restrictive about his eating, but getting a tad better. He is still on anti-inflammatories around the clock and finished up his initial course of antibiotics for the mycoplasma. We’re waiting to see three different specialists: a local office that treats PANS but not Lyme, an office in Cleveland that treats both but doesn’t take our insurance, and Infectious Disease at our Children’s Hospital who may treat the Lyme, but not PANS. Things aren’t normal, but they are improving a little each day and I’m a bit more hopeful than I was a week ago. I get my Charlie back for extended periods of time, but he still goes and is replaced by the sick kid who does not behave like Charlie in moments of stress or frustration. We aren’t giving up.
I share this story because I truly believe there are a lot of kids out there suffering who aren’t being properly treated. I think a lot of the mental health issues we see in both kids and adults are being caused by autoimmune diseases that we don’t know are happening. I think that it shouldn’t take a stubborn and persistent mom with a laptop to figure out what is making her kid sick. But right now, it often does. So I’m here to tell you that YOU KNOW YOUR KID. You are your kid’s advocate and you shouldn’t be afraid to listen to your gut, to keep digging for answers, and to stand up and demand proper care.
I’ll share more as we learn more and as I have time, both here and on my IG feed. If you’ve struggled with this and have guidance to share, or questions to ask, please leave them in the comments below.
If you’d like to learn more about PANDAS/PANS I highly recommend the documentaries My Kid Is Not Crazy and Stolen Childhood, and for Lyme watch Under Our Skin, all available on Amazon Prime (free for Prime members). I can also point you to FB support groups and literature and plan to do a whole post on resources when I get my footing.
Don’t give up!