‘He would literally fling his arms out from his body over and over again from morning until night.’: Parents shocked to learn of son’s PANDAS diagnosis

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“In May 2012, my 4-year-old son, Spencer (who had always been a super amiable, easy-going kid) began to exhibit some interesting behaviors. These behaviors started out small and infrequent but became more and more pronounced and habitual until they were continuous. At first, he started shrugging his shoulders. My husband and I had begun to notice the shoulder shrug but, as he had always been sensitive to specific clothing and it was the beginning of Spring, we thought he was struggling to get used to the feeling of short sleeves on his arms again. But it didn’t get better…it got worse.

We noticed increased frequency of the shrugging and wondered what was going on. Then, every parent’s worst nightmare happened: someone else mentioned it. You can deny and justify a lot of things about your own child alone with your partner but, on May 6th, 2012, my mother-in-law was over to celebrate her birthday and asked what he was doing with his arms.  At that point, we started to take it seriously. Someone else had noticed that something was wrong with our child.

Amy Clark at Amy Clark Studios

Within days of that conversation, Spencer’s behavior progressed – he was constantly stretching his arms…then flinging his hands above his head. He also seemed to be squeezing his eyes together repetitively. As the behavior progressed, he would literally fling his arms out from his body over and over again from morning until night. If he was eating with one hand, the other would continue to fling.

I’ve included a video here so you can see what I mean. You might notice both the arm flinging and the beginning of a eye tic.

While I recognize that he is still absolutely, stinking adorable…you have to admit: the behavior is concerning. Add to that – this went on for 10 weeks unrelentingly.

By June, we had begun taking him to doctors. As most parents would, we started with our pediatrician. This is a woman we absolutely trusted. I was a pretty ‘crunchy’ pregnant woman and had strong opinions about natural childbirth and what was done to babies immediately post-birth. I had interviewed pediatricians and family docs before Spencer was born and this particular doctor was very supportive of natural ideas.

We had great experiences with her and her practice partners and they had been incredibly helpful with Spencer’s constant ear infections and infantile asthma during the first couple of years of his life. Unfortunately, they were out of their league on this one.

During our first visit in mid-May, we were told that many kids exhibit tics at this age. Spencer had done some light stuttering at about 2 years old and we recognized his brain’s ability to process thoughts was outstripping his mouth’s motor skills with regard to speaking. The pediatrician’s office made us feel that perhaps these new movements were perfectly normal and that Spencer would quickly outgrow them. Within weeks, we recognized he wasn’t. The movements were exacerbated…so we returned to the pediatrician. At that point, the potential for Tourette’s was discussed and we were advised that, if he did have Tourette’s, there was nothing to be done: we would simply have to wait until the behaviors reached a point that they were impacting his ability to function and then consider lifelong medication. It wasn’t a very hopeful message and we weren’t seeing any improvement.

Amy Clark at Amy Clark Studios

You’ve probably heard it said that, ‘There is nothing more powerful than a mother with a sick child and access to the internet.’ Well, that may go double for grandparents. My parents had always been extremely involved in Spencer’s  life…they live about 2 hours from us and drove (every single weekend without fail) to our house mid-Saturday, spent the night and drove home Sunday mid-afternoon. They gave my husband and me a break every weekend to spend time together and built an incredible bond with our son. So, they saw these tics develop and knew firsthand they were unusual and concerning, and that our doctors really weren’t providing a lot of insight. It was under those circumstances that my mom began searching the internet for answers.

I’ll tell you the truth: I thought she was crazy. I as much as told her so. But, in late June, I received a text from my dad that said, ‘Your mom thinks Spencer’s tics are because of strep throat.’ Now, I’ve always been considered the ‘smart one’ in my family and my parents occasionally don’t understand something that seems perfectly obvious to me…so I got on my high horse. Everything I had researched pointed to Tourette’s.

Somehow, I never encountered language that indicated there were other reasons for kids to have tics. I was absolutely convinced that my mother didn’t know what tics were or didn’t know how to spell ‘tic’ correctly or something! What could tics have to do with strep throat? I blew her off.

Unbeknownst to me, she had searched Google for ‘The Top Causes of Neurological Tics in Children’ (pretty smart, huh?) and come across an article that discussed ‘Other Causes for Tics.’ The article was primarily about Tourette’s but it explored, in one brief paragraph, other things that could be causing Spencer’s issues. You can see that article here.

Mom noticed the reference to strep throat in the article and recalled that Spencer and my husband had contracted and been treated with antibiotics for strep in mid-April. Once she got me on the phone and explained what she had found, she was able to convince me to read the article. In order to explain what happened next, I have to give you a bit more background:

During the same interval in which we had noticed these tics (early May to early June), Spencer was also experiencing some other behavior changes. He was 4 and had been dry at night for over a year. Suddenly, in the middle of May, he began wetting the bed nightly. He had been in daycare since he was 12 weeks old consistently and LOVED his school and his friends. Around late May, he began clinging to us at drop off and would require 10-15 hugs before we could (with him still screaming and crying) finally leave him with his teachers. Sadly, it never occurred to us to relate these behaviors to the tics. We had seen mild regressions before (all parents do, right?) and assumed he was ‘going through a phase’ and it would work itself out with the right support from us. We diligently gave our 10-15 hugs every day, talked to him about his love for school and never shamed him for wetting the bed. Nothing changed.

Amy Clark at Amy Clark Studios

As I look back at it now, his personality also started to deteriorate. As you might be able to see from the videos, he was a happy, silly, amiable little guy. Suddenly, life seemed to become hard for him. Clothes didn’t feel right (he had always been sensitive and had strong preferences for certain socks and ‘no tags, Mommy’ but this was different), he seemed withdrawn and, in general, I started to feel like we were ‘losing’ the happy-go-lucky side of him. Decisions were difficult for him to make…he seemed to be folding in on himself. We had absolutely no idea what was going on.

So, that’s what we were facing when my mom sent me the article about tics in children. I read the paragraph that really struck a chord.

‘Tics may be caused by extreme stress, some medications including Ritalin, Dexedrine, and Adderall (stimulants), or Tegretol may cause them. On rare occasions, some infections that involve the brain (encephalitis) may be associated with tics. Other genetic and metabolic disorders, mostly those that affect the basal ganglia may be associated with tics or with tic-like phenomenon. Also viral infections may rarely cause tics. Streptococcal infections have been associated with the development of tics and obsessive-compulsive behaviors. PANDAS or pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, is a known entity in which the antibodies to the streptococcal bacteria attack the basal ganglia causing the above-mentioned symptoms.’

Reading that, I hurriedly went to check our insurance records. Sure enough, The Dude and my husband had received prescriptions for antibiotics to treat strep throat on April 15th. I began to search further on the web, typing in PANDAS to see what else I could learn. That’s when this happened:

‘Are there any other symptoms associated with PANDAS episodes?

Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

  • ADHD symptoms (hyperactivity, inattention, fidgety)
  • Separation anxiety (child is “clingy” and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
  • Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment)
  • Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
  • Changes in motor skills (e.g. changes in handwriting)
  • Joint pains’

(Whole article here.)

The highlights above are mine but the conclusion was obvious: my child had PANDAS.

We spent the next several months of our lives researching the condition on the internet, trying to educate our pediatrician, finding PANDAS parent support groups and ultimately being referred to a D.O. who is an expert on PANDAS in our own town.

She immediately began antibiotics with Spencer, and the effect was magical. The tics would subside and we would get glimpses of his old personality. Unfortunately, as soon as the antibiotics ran out, so did our time without PANDAS. The doctor began taking him off if certain foods (gluten, dairy, corn syrup and food dyes) and adding supplements (curcumin, reishi mushroom, and olive leaf among others) to his daily regime.

His symptoms seemed to improve slowly.

Unfortunately, after close to a year, we had still not managed to get the bed wetting under control permanently. It always came back and was stressful and humiliating for Spence. Having exhausted all of her ideas, our Columbus, Ohio doctor referred us to a doctor in the Bronx, New York, who has consulted with us via phone every since that time. With her help, we were able to eliminate 95% of Spencer’s symptoms and address intermittent flares as they have arisen over the years.

Amy Clark at Amy Clark Studios

Spencer is now almost 12.  We’ve spent nearly 8 years battling this condition. Spencer has struggled with not being able to eat what his friends eat. He’s taken 10-15 supplements each and every morning and night. He’s had multiple blood draws and gone through phases of pronounced stuttering, rubbing his face until it scabbed and coughing so incessantly we thought we were going to get thrown off of a plane.

3 things have truly saved us:

  1. My mom figured out pretty early what was going on with Spence. Many families are misdiagnosed for years and PANDAS only gets worse without (or with the wrong) interventions. Having an early diagnosis and an action plan has helped my husband and I be on the same page about how to help our son. I see so many families torn apart by uncertainty about this condition (I.e., Dad thinks the child has PANDAS but Mom thinks he just needs more discipline or vice versa) We didn’t face that challenge and have been able to work as a family to help Spencer’s body heal.
  2. Spencer is a trooper. He’s done shooters of fish oil without complaint. He’s had blood draws that included enough blood for 33 different tests (and touched it out although the sight of blood makes him faint.) He’s attended birthday parties where he could have neither cake nor ice cream and pizza parties where he couldn’t eat pizza. He’s faced school with an embarrassing stutter or scab on his face and patiently explained to adults and children what PANDAS is and how it impacts him. He lives with intermittent OCD and intrusive thoughts that can’t make his life easy but is still one of the happiest, most amiable kids I know!
  3. Finally, we’ve been blessed with an amazing community! Our family and friends have stood by us, listened and provided support. From the guest phone call I received from the parent of a 4 year old who was crying because she was bringing popsicles to school for her birthday and knew Spencer couldn’t have food dye, to the parents who have volunteered to pick him up from school when he missed 7 weeks this year due to a painful tic that left him in pain every day and Eric and I had already used all of our PTO, we have been loved and cared for throughout our journey. My mom and dad spend hours prowling grocery stores to find new foods that Spencer can eat and friends’ parents take responsibility for administering his supplements morning and night so he can attend sleepovers. I also cannot say enough about the children who have surrounded Spencer as friends. I’ve found myself challenged at times not to finish his sentences when Spencer’s stutter flares up but have watched a 9-year-old boy stand patiently waiting for nearly an entire minute while he wound up on the beginning of a sentence. They have taken the tome to learn about Spencer’s condition and they accept him into their lives as one of their own.

PANDAS was an incredibly scary diagnosis when we first received it…and dealing with it had been no walk in the park, I’ll admit. We were lucky to catch it early, however, and have been luckier still for the support and care of doctors, family, friends and sometimes even strangers over the years. When Spencer’s symptoms originally began, I thought I had lost my sweet boy forever to whatever was going on in his brain. After diagnosis, the literature I read about PANDAS was equally devoid of hope. 8 years later, I’m happy to say that my son lives an amazingly charmed life WITH PANDAS…and we have an incredible amount of hope and excitement about his future.”

HR Imaging

This story was submitted to Love What Matters by Shannon Navin of Columbus, Ohio. You can follow her journey on Instagram. Have you or your family overcome a medical mystery? We’d love to hear from you. Submit your story here, and subscribe to our best stories in our free newsletter here.

Read about another child’s struggle with PANDAS:

‘Our child’s personality changed overnight at the age of 15 months. A once happy, easy going child suddenly turned aggressive, irritable and OCD’ish.’

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