Ring 20 Syndrome | One Parent’s Perspective
The time spent with my daughter, who happens to have Ring 20, has covered a wide scope of emotions. We have experienced great joy as well as extreme sadness and every emotion in between those two as mother and daughter.
For the first seven and a half years of her life, my daughter was strong, athletic, active and shy. Our family, my husband, son and daughter, had a social, busy lifestyle which included sports and school activities. Then things began to change in the spring of 1988 when we noticed our daughter “losing focus’ ‘ on the soccer field and not responding to our requests. She was a fierce competitor in soccer and on the swim team, winning many awards for her athletic accomplishments. Once at swim practice she was zipping down the lane, turned and then returned in slow motion. In one soccer game she was on defense when she just stopped challenging any opponent. We called to have her come to the side with no success. These were some of the first signs of what we now know, decades later, is Ring 20 syndrome.
Between the spring of 1988 and the fall of 1989 doctors tested her for diabetes which was negative,prescribed inhalers for asthma which she used but didn’t result in positive results and had EEGs which were negative. We knew that physical activity brought on the syndrome. My husband was able to get a stationary bike into the EEG room. My daughter rode for less than 10 minutes and went into seizure. From that point on we knew her diagnosis was epilepsy. The official diagnosis was atypical partial complex seizures. I always said that “atypical” was the most important word in her diagnosis,
From that point on my daughter was prescribed every known epilepsy drug for her diagnosis. Some had no relief whatsoever. Others caused dizziness, double vision, hallucinations, nausea, mood swings, lack of or increased appetite,and/or a severe negative affect on her cognitive ability. Every time a new drug comes on the market, my daughter has opted to try it. The trials are wearing on the patient and the family. We attempt a trial when we can free our calendars as best we can. When my daughter was school age we waited for a summer or winter recess to start the trial. Life then revolves around administering doses of the new medicine, noting changes, if any, in symptoms. There’s often a need to devote extra attention to nurturing, nursing and bolstering my daughter’s self worth due to depression during these times. Throughout many trials, the best combination of epileptic medicine for my daughter has been Depakote and Trileptal.
We have spent many overnight stays in hospitals for EEG scans. We also had a stay in the hospital to start the Ketogenic Diet. This proved to be an unsuccessful treatment, as well. The diet was extremely difficult for my daughter to follow through the 3 month trial. She is strong and always perseveres through hard challenges. It also affected our family life dramatically. We needed to prepare minute portions of food in precise measurements that we didn’t eat. Who eats slabs of butter and cream with one bean?! The meals were strange. Then we ate without her so that she wouldn’t see us having a
normal meal. This changed our family dynamics because we always have and still do eat together as a family.
Once our daughter entered high school, friends began joining school teams, getting their driver’s licenses, dating and my daughter became isolated at home just when teenagers were spreading their wings. Who could she take her sadness and ire out on? Her family. Teen years through mid twenties were rough years emotionally for her and us. After graduation from high school, we eventually found a 2 year vocational school in PA for kids with disabilities. It was about 3 hours from our home. It was the first time my daughter opted to live on her own. It proved to be a growing experience for my daughter to live with peers having a wide variety of medical issues. After her time away from family, she chose to come home. Luckily, we have room for her and truly love having her with us. We know she is safe, taking her meds, traveling with us, getting to doctors regularly and socializing with our family and her friends who know and understand her diagnosis well. Those same people are a great support system for us. I know I can share anything with them. My husband is my best support and we have a strong love that has been a successful marriage for over 50 years. We are blessed.
Over time we have learned that having dogs in our home calms my daughter during seizures and any anxious periods. Their presence in her life is the best of all medicines. She also is able to have lessons at a therapeutic horse farm where she grooms and rides her favorite horse, Betty. This is an essential part of her well being.
I tell my friends and family that Becca has taught me more than anyone on Earth. She has ensured that I became a more patient individual. This not only helped Becca, but the students I teach as well as everyone in my family. Her fund of knowledge for nature and animals is limitless. She has opened my eyes to the wonder of nature that I didn’t stop to completely enjoy earlier. Our love for one another is strong and supportive. We are blessed to have her in our lives.
What do I hope for? Research studies that lead to a cure for Ring 20 so that my daughter and others living with Ring 20 can be rid of the daily seizures that hinder them from being all that I know they are capable of being.