It’s Mental Health Awareness Month and Tourette’s Syndrome Awareness Month (May 15 to June 15). Just want to take the time to recognize this month to bring awareness and share my experience as a mother raising a child with medically diagnosed ADHD, Tourette’s Syndrome, and Motor Tics Disorder.
As a disclaimer, I am not a medical professional. This is my personal experience and I hope to give some insight to those who are experiencing this journey with their children, those who are going through this themselves, or bring awareness to teachers and others around people with this spectrum. Because my son is still at a young age of thirteen, I will not be posting any videos out of respect for his privacy but I hope reading this article gives you knowledge and ease in your journey.
I met my now stepson, Micah, at the early age of four years old when his father, my now husband – Justin, first started dating. From age four years old Micah had showed symptoms with the twitching of his nose, a small cough, and eye rolling – all of which I didn’t think was anything at the time. I associated all of these early stages of symptoms due to dryness in the air due to our severe winters here in Minnesota and thought air humidifiers, nasal spray, or even eye glasses would help minimize his symptoms. Micah’s mother at the time did have him on an asthma inhaler as well. But the one thing I didn’t understand was why his symptoms didn’t subside and was prevalent all year round.
Early on I had addressed to Justin and Micah’s mom to take him to get assessed for ADD or ADHD, but they didn’t think anything of it. Plus, Micah was too young to be assessed anyway until the fall semester of 2013 when Micah was seven years old. We had Micah’s first grade school conference meeting when his teachers told me, Justin, and Micah’s mom to “seek professional advice” for him – in other words meant “go get him checked out.” And that was when I had validation that I wasn’t the only one thinking that there was something more to Micah.
In 2014, Micah was medically diagnosed with ADHD. After the diagnosis we were all asked, especially from school teachers, if we were going to medicate Micah. After doing my research and reading Parenting Children With ADHD: 10 Lessons That Medicine Cannot Teach by Vincent J. Monastra, we were more concerned about his brain development, as he was seven at the time, and didn’t want any negative impact to his brain development and decided that it was not necessary to medicate him.
Seeking Other Professional Advice
In the Fall of 2015, Micah had turned nine years old and started showing other symptoms with excessive eye rolling, which I associated it with dry eyes, again, thinking it was because of the dry and cold winters that we had in Minnesota and thought eye drops would help with it.
Throughout my online research about behavioral issues that linked with ADHD, Autism kept surfacing as a possible spectrum with lots of overlaying commonalities with behavioral issues. Justin didn’t think it was necessary to get him assessed and he truly felt that Micah was not autistic.
The appointment with the Minnesota Autistic Center was finally scheduled and weeks prior to the day of the appointment Micah had developed another symptom that included repetitive high pitch barking, on top of his other symptoms. Through more research I discovered what a “tic” was and that it may be associated to Tourette’s Syndrome. But like anybody, I associated Tourette’s Syndrome with the mainstream of someone swearing uncontrollably and thought “well, Micah doesn’t have Tourette’s, he didn’t swear uncontrollably.” I wasn’t aware at the time that Tourette’s came in all types variations.
In January 2016, we went back to the Minnesota Autistic Center to hear the final evaluation of the assessment and were told that Micah was not autistic. It was at this point that I asked the specialist if it may be possible that Micah may have Tourette’s Syndrome with a response that there could be a possibility and an assessment with specialist in that area would be best.
Tourette’s Syndrome Assessment
Shortly after the final evaluation at the Minnesota Autistic Center, Micah developed a whole new set of tics that included all types of swear words. This point was very hard for Micah, he was bullied in school and kid’s were taunting him to say swear words as he would come home with a different swear word as his tics. There was a point that one of his tics was in a full form sentence saying inappropriate things.
Micah would be so drained from his day at school and from tic-ing all day that having him do his homework after school was literally torture. His whole body would shut down and be in a state of agitation. I have a video of Micah standing, head facing the ceiling with his eyes rolled back and his mouth open, body twisting side to side and his arms swinging uncontrollably. This is not a typical child throwing a tantrum, this is a child at their wit’s end. I’d admit there were days that I allowed for him to pass up on homework and not do it, even I knew that there was a capacity to someone’s ability to deal with things.
So besides doing homework in the evenings, our evenings were spent trying to calm him down by listening to music, watching shows on his tablet and even taking him swimming. All those things seemed to calm him down.
We met with a neurologist and followed up with brain scans and bloodwork to rule out if his tics were caused by a tumor or something else, which it wasn’t, so that was at least a good sign. So on April 19, 2016, at age nine years old, Micah was medically diagnosed with Tourette’s Syndrome and Motor Tic Disorder.
We were seeking medical treatment for Micah’s Tourette’s Syndrome to help ease his tics so that he could manage in school. Some people have asked as to why we didn’t treat the ADHD as well and we were told by healthcare professionals that treating both at the same time will only cause a person to be more aggressive – so we opted to only treat Tourette’s. At first we tried guanfacine but that caused Micah to have chest pains so we took him off of that medicine after a week. Then in May 2016, we tried aripiprazole, which is similar to abilify, which seemed to help little by little as we worked with the neurologist to determine the right dosage.
During this time we sought behavorial therapy for Micah which ultimately didn’t work as one therapist discontinued their service with us because they couldn’t help Micah and the other didn’t provide time flexibility as available sessions happened during the day while Micah was in school and Justin and I had work.
Jumping forward to December 2018, Micah was 12 years old and we were steady with the aripiprazole treatment and balancing his life at school. We had established a school IEP plan. He had been suspended a couple times up to that point. He had significantly gained weight as a side effect of the medicine. His vocal tics had subsided but his facial tics were more prevalent.
The Deal Breaker
In December 2018, while we were calling our usual pharmacist to refill Micah’s aripiprazole prescription, we were told that his medicine couldn’t be refilled and that we had to call and talk to his neuro-psychiatrist who prescribed the medicine. So we contacted the neuro-psychiatrist’s office which led them to contact to our health insurance company. Then got the run around that we had to talk to our insurance company to come find that there was a dosage issue that needed to be corrected by the neuro-psychiatrist so that it can be covered by insurance. This all took a process of about a week until we were able to give Micah his medicine again. The morning that Micah took his regular dosage of the medicine, he later suffered a seizure at school on December 20, 2018. Micah was taken to the ER in an ambulance at the Children’s Hospital.
We had follow up appointments with his neuro-psychiatrist and requested a referral from our primary physician to see a neurologist to determine if the seizure may have caused any brain damage. The neurologist we saw was of no help at all, there were no brain scans, and no determination if the seizure may have caused any brain damage. The neurologist stated that there was no correlation between the seizure and re-taking the medicine. As if it was all just a big huge coincidence when there was obviously a direct cause and effect.
We left the neurologist’s office feeling angry that we wasted our time and money for nothing to get done and no resolution as to why we were there in the first place – to figure out if he suffered brain damage from his seizure. We went from explaining our whole story again to this neurologist about Micah’s diagnoses and behavioral issues to him internalizing this information as a child throwing a tantrum and having misfits. You would think that someone in the neuroscience field would understand Tourette’s Syndrome but obviously not this individual.
We took matters into our own hands to find our own alternative treatment for Micah. I bought the book Natural Treatments for Tics and Tourette’s: A Patient and Family Guide by Sheila Rogers DeMare by Sheila Rogers DeMare which lead me to read The Elimination Diet: Discover the Foods That Are Making You Sick and Tired–and Feel Better Fast by Tom Maltere by Tom Malterre. As a result of reading these two books in the summer of 2019, Micah had allergy testing and was on an elimination diet.
The process of the allergy testing that we had Micah do was a grid-like tool that had at least 10 needles that consisted of various environmental components to be poked at the same time on his back. These pokes as described by the nurse and by Micah were that of like multiple pencil pokes at the same time. The allergy testing included three grids that consisted of over 30 environmental allergies.
The allergy testing resulted to Micah reacting to several components which were aligned with seasonal allergies and is highly off the charts allergic to ragweed. During the fifteen minute waiting allergy testing process, all of Micah’s tics surfaced and he was clearly agitated with streams of tears down his face and him squirmy his body. I had to hold his hands to keep him from scratching. As a result, the small bumps on his back were his reactions to those environmental components. So these allergies caused Micah to have an increase in tics, which now looking back, spring and fall time always seemed to be the season for him to act up in his behavior and tics.
The elimination diet proved that Micah was sensitive to the intake of any sugary processed food that caused him to have an increase in tics. At the end of the summer, Micah had lost about ten pounds and so many friends and family were shocked on how drastic he looked.
Micah has not been taking any prescribed medicine since he last suffered his seizure in December 2018. One of the most memorable thing that he said to us after being off of the medication for about a month was that he said, “I feel free.” That brought us tears and guilt as parents as we wished we should’ve done better.
The following are things that we are currently doing that is helping Micah:
- Micah has been homeschooled since summer of 2019. The following are books that helped me navigate homeschool life:
- Homeschool Adventures: Learning Through the Power of Field Trips (Live, Learn, Work at Home) by Melissa Calapp
- Homeschoolers Are Not Hermits: A Practical Guide to Raising Smart, Confident, and Socially Connected Kids by Kathy Oaks
- The 5-Hour School Week: An Inspirational Guide to Leaving the Classroom to Embrace Learning in a Way You Never Imagined by Kaleena and Aaron Amuchastegui
- Homeschooling 101: A Guide to Getting Started by Erica Arndt
- He’s on a balanced nutritious diet with very little to no processed foods – especially processed sugar.
- We limit him to an hour of screen time daily.
- He takes over the counter allergy medication when needed.
- He takes his daily multi-vitamins.
- He sleeps with a fifteen pound weighted blanket every night.
- Sleeps on average eleven to twelve hours a night.
Family and friends look at Micah now and they think that he’s medicated or surprised that he has Tourette’s Syndrome because they simply don’t notice the tics. The ADHD spectrum is definitely apparent but you look at him and he looks like a normal healthy thirteen year old boy.
Everybody’s journey is different and I hope that sharing our experience helps you on your journey and/or bring awareness to Tourette’s Syndrome and mental illness. I may not be an expert in the medical field, but I am an expert in my child.
*Disclaimer: As an Amazon Associate I earn from qualifying purchases.