How to make 2020 the best year, decade ever? Seems like a lot of pressure, at least that was what I thought on Dec. 31st. I’m never one to have a New Year’s resolution or make big statements like “I am going to run a marathon this year.” (If you are that person, good for you!)
But grand resolutions aside, I did think I needed something just for me to focus on this year. As I started pondering what that something would be and what would be a good way to start the new decade and how I’d like things to be in 2020, a common theme – word – kept popping up: “be.” Something about the word “be” is comforting and calming to me. Just “be,” be mindful, be grateful, be forgiving were just a few that came to mind. I adopted this word, “be,” as my mindset for the new year.
January 1, 2020 rang in and I felt good and settled and happy with my new mantra. As always, I had a lot on my plate; working on many different factors with Maci: school, health, independence, etc. My stack is constantly full, but I was content and felt relatively in control. I was ready to just be.
But be-ing took on a whole new meaning on January 2nd. This day brought a very new chapter in our world for Maci and our family. Maci suffered her first grand mal seizure, also known as tonic-clonic seizure. It started as an ordinary day. She was just sitting in my parent’s kitchen, enjoying a new toy. Then all of the sudden, “boom,” she is on the floor, not moving. I turned her over and saw her shaking and stiff; a horrifying loss of color and life. It seemed like forever but lasted maybe only a minute. We called 911 and rushed her to the ER, needing answers to so many questions. In those moments, recalled my motto for 2020 and was trying to be calm.
As I sat in the ER with Maci, my mind was racing and full of all sorts of thoughts. My first instinct: circle the wagons with our team and get a plan in place. Second thought, disappointment that this had finally happened to us. I know many other families and children that have the challenges of seizures. We had discussed this long ago, as far back as when Maci was 2 years old, as Autistic children have a higher probability for seizures. But, for 13 years, we had been spared.
We stayed in the ER for about 4 hours. Gratefully, all her tests came back normal. We were released with information about seizures and told to follow up with our primary doctor. On our way home, the reality set in, dealing with this new challenge and navigating a new path down another road. Fortunately, we’ve always had really amazing doctors and people helping us. I generally know I can rely on their judgement and can go to them for direction and advice. And I would learn we needed a lot of them. Be appreciative.
With this comforting thought, I called Maci’s primary doctor first thing the following morning. I spoke with one of the nurses and conveyed everything that had happened. I was told she would communicate the situation to our doctor and call me back. I was fully expecting her to instruct me to jump in the car and get Maci there right away, so I was a little surprised and taken back at what she actually said to me. According to her, our doctor said since the ER tests showed that Maci returned to her baseline, we didn’t need to come in and see him right away. We could wait and see him in the next couple of weeks.
In this moment, I knew I needed to be an advocate for my daughter. I said back to the nurse, “I am not really sure what you consider as “baseline” for Maci given she is Autistic and this is the first time she has had a seizure!” In truth, I was genuinely surprised and disheartened he would not be more concerned; Maci has been his patient since the first day of her life! His lack of urgency made no sense to me. I went on to tell the nurse I had called them first as I needed to create a game plan for how to proceed and what to expect and would like his help. In frustration, I suggested that if he is not the doctor to help, I would go elsewhere. She immediately back pedaled and very swiftly arranged for Maci to come in that afternoon.
More surprises when we arrived for the doctor appointment that afternoon. The doctor walked in and said, “Happy New Year” and asked what he could do for us today? In my shock, I responded, “did you not hear what happened to Maci yesterday?” He had a blank look on his face and said something like “Well, I think Maci had a fall or something.” I quickly said “YES, because she had a grand mal seizure!” He replied, “Oh wow, I did not know that.” It became clear now why he hadn’t been very concerned. I was really glad I had pushed to see him, but I did wonder how such a miscommunication could occur between nurse and doctor! Next lesson learned, be thorough in conveying vital information.
My faith in our doctor restored, we proceeded to have a very good conversation about Maci’s seizure. We discussed that Maci had been super sick the week prior to the seizure and she had her first menstrual cycle a week before Christmas. Physically, he explained, that was a lot for her and her immune system. He then provided a referral to a Neurologist and offered his assistance to help get us in as soon as possible. Be thankful Marikay. We had some direction and place to start.
In conjunction with Maci’s primary doctor, I had also scheduled an appointment with our Naturopath who we see frequently and whom I really admire. She gave me more information and a different perspective, especially relating to Maci’s system and her Autism by explaining the dynamics of seizures and Maci’s situation.
While I did know that people with ASD are more apt to have seizures, I didn’t know it was as high as 30% more. Another fact unknown to me, she said the chance for seizures increase during puberty. So now it really made sense what was going on in Maci’s body. As I was there, I received a call from Seattle Children’s Hospital. The hospital has a first-time seizure clinic and we could get in for an EEG that week. My naturopath does a lot of work with Seattle Children’s and their neurology clinic/doctors. She and I discussed the various doctors there and she provided insight into which ones would be a good fit for us.
The next person on our team I spoke with was in California, our development doctor specializing in Autism for the past 30 years. She is super dynamic and fantastic. I always get great help and information from her. She encouraged me to meet with a neurologist specializing in Autism AND puberty/teenagers.
I then spoke with another development pediatrician Maci has seen over the last 8 years. He has vast knowledge/experience in everything with ASD and kids. He reiterated the information I had learned with the relationship of seizures to Autism. In addition, he related that constipation can increase chances for seizures. This revelation made perfect sense to me as I know that gut and bowel issues are very common with people with ASD. Maci has certainly had her fair share of challenges in this area starting when she was a baby and these conditions require constant vigilance. (This doctor is a big believer in Miralax as a way to relieve constipation.) He was also honest in sharing that in his practice, his patients who have seizures generally continue to have them. He wanted to make us aware that Maci may have more. Working together, we put together a preventative plan and tools we can use to help her system function better and respond should another seizure occur. Be prepared.
We are 22 days free from any additional seizures and I have gained a lot more information and knowledge regarding seizures. Here is the information and resources I felt were most helpful:
• Seattle Children’s Autism Clinic & first time seizure clinic – information on seizures and hand out on procedures. Very helpful to have close by and to give to other family, school and therapists.
• Vital Kids Medicine – naturopath information
• Kartzinel Wellness Center – Dr. Jerry Kartzinel, helped provide basic information and preventive plan.
More resources and information are available at maciandpebble.com.
We are currently scheduled to meet with a neurologist at the Seattle Children’s Autism Clinic specializing with seizures and autism. In February, we go in for a MRI. More to learn and understand. Be grateful.
Marikay Cuthill is mother of Maci, a vibrant, curious 13-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com
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