Awww…isn’t he cute? PANDAS…it sounds adorable. Unfortunately, the PANDAS I’m referring to is neither cute nor cuddly and has, at times, been devastating for my family.
In May 2012, my 4 year old son (who had always been a super amiable, easy-going kid – we’ll refer to him as The Dude) 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 parents 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.
Within days of that conversation, The Dude’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 posted a video here so you can see what I mean. You might notice both the arm flinging and the beginning of a eye tic.
(Note: I have no idea what the conversation about a ‘guy who fixes Port-o-Lets’ was about but really…conversations with a 4 year old, right?)
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 that we absolutely trusted. I was a pretty ‘crunchy’ pregnant woman and, as was appropriate for the time, was very concerned about over-vaccinating and had strong opinions about natural childbirth and what was done to babies immediately post-birth. (More on that some other time, if you are interested!) I had interviewed pediatricians and family docs before The Dude was born and this particular doctor was very supportive of natural ideas and an immunization schedule that took things easier than recommended by the CDC. We had has great experiences with her and her practice partners and they had been incredibly helpful with The Dude’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. The Dude had done some light stuttering at about 2 years old and we recognized that 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 The Dude would quickly outgrow them. Within weeks, we recognized that 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.
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 The Dude’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 that 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 The Dude’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 The Dude’s issues. You can see that article here: Tic Disorders Article from Childbrain.com
Mom noticed the reference to strep throat in the article and recalled that The Dude 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), The Dude 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 that he was ‘going through a phase’ and that 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.
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 you might have read if you clicked on the link above that said:
‘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: NIMH article on PANDAS)
The highlights above are mine but the conclusion was obvious: my child had PANDAS.
Part 2 tomorrow.