Eleven years ago this week, Dylan was born. The birth of our first child rocked our world in all the ways you would expect. One week my primary focus was to close loans in the San Diego mortgage company where I worked; the next week my main job was to keep a tiny human alive. No pressure. It was quite an adjustment, and we had our ups and downs, but 10 years, 3 states, and another child later, we were thriving. I had found my groove as a mom, we had found our rhythm as a family, and we had found a great community in which to raise our children.
If you’ve been following my blog for a while you may have noticed a large gap in blog posts between December 2016 when I wrote about “Going Dark” and July 2017 when I shared my breast cancer diagnosis. In a novel, we would call that “Going Dark” post a bit of foreshadowing. I didn’t know exactly what challenges lay ahead, but I knew that we were dealing with some stuff. I had felt energetically “off” since September 2016. Our whole family had been a bit energetically “off” since January 2016. We endured a broken arm, a semi-paralyzed guinea pig on our anniversary, a lost passport while about to board a cruise, weird infections. Some people read my blog posts last year and asked if we were okay. They all seemed a bit dark and foreboding. We were struggling, but I couldn’t really nail down why. And this wasn’t a novel, this was real life.
I find it fairly easy to be open about my own struggles, emotions, and challenges. But this story I’m about to tell is NOT my story. It’s Dylan’s story. And I don’t take the sharing of it lightly. As you’ll see, Dylan’s story and my story are very closely connected. As any caregiver understands, Dylan’s struggles became my struggles; his pain became my pain. I firmly believe that my story of healing wouldn’t exist were it not for Dylan’s story of healing. And part of why Dylan is on a path to healing is because a mom I don’t know was brave enough to share her child’s story on a TODAY parenting blog, and it found its way to Facebook. A friend tagged me in the post (shout out to Kathy Bernardo), and I suddenly had answers for what was wreaking havoc on my child. My hope is that me telling this story makes a difference for another family out there who is struggling and doesn’t quite know why. Maybe this will give them answers.
Many friends have asked me how we discovered the cancerous tumor in my breast, and I will share more details on that in the weeks to come. Today’s post is dedicated to my caring and thoughtful son Dylan, who turned 11 on September 5th.
It seemed like a normal night by all accounts. We enjoyed a relaxed day on the Friday after Thanksgiving, went out for an early dinner and finished the day with a movie at the East Providence 10 Cinemas: Pete’s Dragon. After dropping my mom off at her apartment, I headed home with my boys. We walked in the door and Dylan paused in the downstairs hallway, stripped down to his underwear, and asked me to wash all of the clothing he had been wearing, including his outerwear (jacket, hat, gloves). He sprinted upstairs to jump in the shower.
If you’ve lived close to Providence, Rhode Island, you’ll know the East Providence Cinemas as the $1 movie theatre. As you can imagine, they’re not the cleanest theatre around. During the first movie I watched there as an adult, the final installment of the Harry Potter series, a large stain distracted me from the tale of the Deathly Hallows. It appeared that someone had thrown a Big Gulp at the screen and it had never been washed. You get what you pay for I suppose.
The price has gone up over the years—it now costs $3 to see a movie. I haven’t noticed any stained screens lately, but the overall cleanliness is still a bit questionable. So when Dylan asked me to wash his jacket and gloves that had fallen on the floor of the theatre, I went ahead and washed all our jackets. Winter was coming and it didn’t hurt to prepare.
I didn’t realize it at the time but that request has since become a pivotal moment in our journey this past year. An inquisitive and thoughtful child with a brain for science, it didn’t seem strange to me that Dylan had been instructing children for years to wash their hands before they touched his LEGOs. Let’s face it, kids are gross (trademark Sara Norman, 2012 😉); they’re little petri dishes. I ask them to wash their hands before they touch my stuff too.
We were, however, entering a new dimension over Thanksgiving weekend 2016. From that point forward Dylan showered EVERY.SINGLE.NIGHT before getting into his bed. If I denied him a shower for any reason, it created serious distress for him. As a mom to two boys, I’ve heard tales of young men with no interest in personal hygiene. I’m not about to complain that my 10 year old likes things clean. But when he came home after visiting friends or family (some of whose homes were cleaner than mine at that moment) and repeated the scene from Thanksgiving weekend—stripping down in the hallway and running upstairs to shower after insisting I wash his clothes, jacket, and gloves—I knew this was not a “typical” concern for cleanliness. As parents we were heading into new territory, and I was scared.
I had been feeling very unsettled myself that fall and had just gotten a recommendation for a therapist from a friend. I called her the Monday after Thanksgiving. Prior to our first meeting, I filled out paperwork and ranked my stress level in various areas of my life. Based on my answers, at our first appointment my new doctor suggested that I have my son evaluated by a specialist. Within a week I had contacted a child psychological office and requested an appointment.
We were entering the holiday season, and moving through this sort of process takes time, so it wasn’t until February 6th that I had my consultation with the neuropsychiatrist regarding Dylan. Based on the in-depth, 12 page evaluation packet I had filled out, the specialist diagnosed Dylan with generalized anxiety and some OCD tendencies. We discussed doing some testing, but the specialist recommended we start Dylan on Cognitive Behavioral Therapy (CBT) first, and we could discuss further evaluations with whichever doctor we connected with. I was eager to get started with treatment. Dylan’s emotions were all over the map, and school was becoming a challenge, both academically and socially. Although Dylan had been on an IEP (Individualized Education Program) for both reading and writing in his early elementary years, he had made tremendous progress with the support of Jerry and myself, his teachers and his specialists. He was now reading above his 4th grade level and had completed his IEP for writing in the spring of 2016, at the end of 3rd grade. His teacher at that time had found it difficult to believe that writing was ever a struggle for him. He had his best report card ever in the fall of 2016 and I felt like Dylan was really coming into his own academically.
That all changed in the early months of 2017. Dylan was having a hard time keeping up with all the classwork. His handwriting was deteriorating. His emotional responses to situations seemed extreme and inappropriate. Was this the onset of puberty? I thought maybe it was the increasing academic demands as the school year progressed—he’s always had a wonky grip and the physical act of writing doesn’t come easy for him. Although Dylan had “graduated” from seeing the school Occupational Therapist in June 2016, I reached out to her in December 2016 to ask for child psychiatrist recommendations. She heard my concerns and spoke to Dylan’s teacher while we waited for the administrative wheels to turn. By March 2017 Dylan was back in weekly OT again, to practice keyboarding since handwriting was so difficult for him. On April 3, 2017 I sat in an IEP meeting with his “team” and his teacher asked me to be his “scribe” at home so that we could save him the frustration of writing but still get his thoughts on paper. Nightly homework had become a nightmare. I found myself sitting beside my 4th grader night after night, reminding him to focus, calming him down, writing for him as needed. WTF was happening? How did we get here? I tried different strategies for our homework sessions—If I encouraged Dylan to do his homework right away, he inevitably had an emotional breakdown because the school day had been stressful for him and he needed a break. On the days when I allowed him to wait until after dinner, homework took FOREVER and he couldn’t focus. I tried having him do one subject right after he got home and another later in the evening. I was constantly looking at ways to make this time of day easier. On days when we had Cub Scouts or karate, he became terribly upset that he would have no time to himself. In late March we added in weekly CBT appointments, and I desperately hoped that we would start seeing improvements. It felt like my bright and capable child was spiraling into mental illness and I couldn’t pull him back no matter how hard I tried. I knew that what we were seeing was anxiety and OCD but I kept telling Jerry that I felt like we were missing something. I felt like there was something at the source of all of this and we hadn’t yet identified it.
I did my best to stay healthy during this time. I had joined a gym in December and I worked out 3-4 times a week. I saw my own therapist regularly. I took more baths and drank less wine. I mentally escaped into the Outlander series of novels. At one point this past spring I remember feeling my heart ache for what my child was going through. I later realized that was the feeling of a tumor growing.
On April 21, 2017 a friend tagged me in an article on Facebook: “Mom thought child had mood swings, not a neurological disorder.” I had pulled back from Facebook during the fall, my sensitive soul just couldn’t deal with the negative energy tossed around during the election cycle. I continued to steer clear of social media in the winter and spring; it was painful to log in and see the smiling faces and picture perfect lives while my child was suffering with an uncertain future. For the first time I couldn’t offer a cure for what ailed him. I couldn’t even define what the ailment was. I remember feeling a bit of denial too when I saw the title: how could my beautiful boy have a neurological disorder? That can’t be our reality. It felt like reading it may make it true.
Despite our regular visits to therapy, the truth is that Dylan’s symptoms were getting worse. Over weekends and school vacations I was hesitant to make plans, even with close friends, because I didn’t know how Dylan’s mood and behaviors would be, and I just didn’t have the energy to constantly buffer him from the world. Looking ahead to the summer, I wasn’t sure if I’d be able to go to Newport Folk Festival weekend, or attend other social events with friends, because I didn’t know if I could leave Dylan with anyone else. This is a child who took his first cross-country flight at age 4 ½ months; who has lived in 4 homes, in 3 different states; who has traveled more than many adults I know; who can tell you what’s on the other side of a black hole without batting an eyelash; who, at age 1 year 9 months, Jerry and I left with a mix of family members for 11 days as we enjoyed a cruise that Jerry won through work, followed by a wedding in St. Thomas; and now, at age 10 ½, I don’t know if I can leave him with his grandparents for a weekend away?
I got a call from the school nurse and his teacher in the late morning of April 27th that we needed to pick him up. They told me he just seemed really “off” and was anxious and on the verge of tears all morning. He had complained of a sore throat before school, but had no symptoms that would keep him home (no fever, vomiting, etc.). He was worried about a PowerPoint presentation they were working on in class and he thought it was due the next day. I gave him some ibuprofen and sent him to school, although my mom instinct warned me against it. That instinct was validated with those phone calls.
By this time Dylan was starting to have “episodes”—they seemed to be like what I would picture a panic attack. He would just get into a space of frustration or upset and he couldn’t get out of it. Over the weekend of May 5-7th we had our two most challenging days yet. The “fits” Dylan was having got so intense that he was hitting himself in the face by the end of it. At a loss for how to help him, I just held him and hugged him and cried with him. And on Sunday May 7th I read that article on Facebook. (Link included at bottom of post)
The article talked about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and the five criteria that help doctors diagnose it: “significant obsessive/compulsive behavior or tics, abrupt onset of symptoms, a patient of prepubescent age, a history of strep infection, and a mix of other neurological symptoms such as loss of appetite, bed-wetting, decreased school performance and behavioral regression.” I remembered that the intake form for the child psychologist had asked about recent strep infections. The last one that Dylan had was in January 2016—definitely not recent, but it was strange. His brother Cooper started complaining of a stomachache first, and then Dylan started. He had no fever, no signs of a cold or flu, nothing to keep him home from school based on the illness criteria. He missed three days though because of severe stomach pains that kept him up all night. Cooper’s pains passed after five days and I assumed Dylan’s would run the same course. He was on day 7 with no sign of improvement when I finally took him to the urgent care on a Sunday morning. They diagnosed him with strep throat and an ear infection, although his throat didn’t hurt, his ear didn’t hurt, and he had no fever. I had never seen a strep diagnosis like that. I felt like a jerk. We started him on antibiotics and things cleared up.
But still, that was too far away from the initial onset of OCD symptoms. So I started pulling up more online information about PANDAS. It was like reading a health history for my family. Dylan had gotten a routine vaccination in September 2016 at his annual physical, and he developed cellulitis. Our family doctor assured me he had never seen that in all of his years of practice. We found ourselves back at the urgent care, this time over Labor Day weekend, the weekend of Dylan’s 10th birthday. They prescribed a 10 day course of both steroids and antibiotics and gave him an antibiotic shot in his bum. He started 4th grade three days later.
After reading that cellulitis could be caused by strep, and that a family history of rheumatic fever was a risk factor, I made an appointment with our family doctor. My family history also includes mental illness. Some folks need regular checkups for their cholesterol or blood pressure; we Cleary’s sometimes need support for our mental and emotional health. I’m okay with that, and initially I thought that was what we were dealing with. When I first reached out to the school Occupational Therapist for a psychiatric recommendation on 12/13/16, I told her that I wanted to be proactive about the support I offered to Dylan as he entered puberty. It never occurred to me that what we were dealing with was an autoimmune illness and that the source and treatment could be found in his physical body.
On May 12th I spent 30 minutes explaining to our family doctor the progression of Dylan’s illness over the last 6 months. He assured me that this was NOT the “normal” onset of mental illness in a child, and that this wasn’t Dylan—something was attacking his brain, and if it wasn’t PANDAS we would do more tests to identify the culprit. Based on my instincts, he prescribed Dylan a 30 day course of antibiotics and ordered some bloodwork. Jerry and I left for a friend’s wedding in Mexico the following week, and received a voicemail from our doctor on our first full day there. Dylan’s strep antibodies were high and out of range. We were on the right track.
We returned from Mexico on May 23rd to a positive report from my mom, who had been with the boys while we were away. We arrived home just before bedtime, and Dylan asked me “I don’t need to take a shower tonight, do I?” I think I cried. My boy had been obsessively showering every single night he slept in his bed since November 25th. He didn’t need to shower if he slept at someone else’s house—it was his bed that he was compulsively keeping “clean.” I gratefully assured him that it was fine to skip a shower that night. For the first time in months I felt like we were moving in the right direction. The mystery illness that had defined our lives for the past six months was loosening its grip on my child.
Three days later I had my regular screening mammogram, where I mentioned the lump I had felt in early March. Thus would begin my own spiral down a rabbit hole of doctor visits and scary diagnoses. But for those three days I was okay, because my son was going to be okay. And I knew that I could handle whatever was about to come my way.
Here’s the link to the article I read on May 7th, that led to Dylan’s diagnosis: https://www.today.com/parents/mom-suspects-daughter-has-pandas-after-behavioral-changes-t110552
For more information about PANDAS and its risk factors and how it affects children, check out the PANDAS Network link below. According to them:
“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.
PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.”
Handwriting regression is a symptom of PANDAS. When Dylan’s papers came back at the end of school I clearly saw the deterioration we had been dealing with. The paper on the left is a rough draft he did on 10/17/16. The paper on the right is a rough draft completed in June 2017.
Me with my sweet boy at 2 months old.
Dylan on his 7th birthday, first day of 1st grade for him, 1st day of preschool for Cooper.
Dylan in 2015 at age 8, proudly displaying his Cub Scout Pinewood Derby 1st place trophy.
In early June 2017 we went on a cruise with Jerry’s whole family (thanks again Lorry & Phil). This picture was taken 3 weeks after Dylan started antibiotic treatment for PANDAS and 6 days before I received my breast cancer diagnosis.