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Tyson's story: from TSC to seizure free
Picture: Tyson beaming with a contagious smile posed right next to a small, but mighty sign that simply says “one-year seizure free.
On June 11, 2019 Tyson Cones celebrated one year free of seizures. This is not just a mere milestone for the Cones family. Tyson went from having three to four seizures per day to a whole year free of them!
Tyson started to have seizures around 6 months old. Kelly and Peter Cones, Tyson’s parents, recalled him freezing and making a "pouty face," reminiscent of an infant’s face when they have gas, but they didn't think much of it because they were inconsistent and it really may have been gas.
Six months later, Kelly and Peter noticed something a bit off, Tyson began to slump to his left side. “In our hearts we knew something wasn’t right, but we also didn’t want to be over reactive first time parents,” Peter explained.
“He’d already had his 1-year check-up, so we decided to bring it up to his pediatrician during his 15 month appointment. That’s when our whole world changed. I saw the look of concern on our pediatrician’s face when I showed him a partial video I was able to capture and I knew something was really wrong,” Kelly recalled.
Tyson’s pediatrician immediately ordered an EEG that came back abnormal and followed up with an MRI.
“Within two hours after his MRI we received a call from the neurology team at Texas Children’s Hospital’s West Campus asking us to come right back to the hospital. The scary thing was, it was the neuro team that called back, not radiology. That was the hardest drive we have ever experienced because as Tyson’s parents, we were fearing the worst,” Kelly explained.
At the hospital, the family met a neurologist who explained Tyson has tuberous sclerosis complex (TSC) and immediately began to treat Tyson.
TSC is a rare genetic disorder that causes benign tumors to grow in the brain and all over the body. The benign tumors can affect the skin, brain, lungs, kidneys and heart. It is estimated that TSC is diagnosed in 1 in 6,000 live births.
“I just sat down on the floor in the doctor’s office; I couldn’t process everything. I remember my husband asking them ‘Is my son going to die from this?’ So much information was coming at us and we kept thinking our child is perfect, nothing can be wrong with him,” Kelly said.
The neurologist responded that TSC is a spectrum disease. Some children with TSC live normal lives, while others are highly affected. “We won’t know what it means for Tyson until he is closer to 2 years old,” Kelly recalled the medical team saying.
After running multiple tests and scans to check all of Tyson’s organs, his TSC only affected his brain causing him to experience seizures. Kelly later made the connection: Tyson’s “pouty face” was really a seizure. In the beginning, he experienced about one to two seizures per day, requiring a more aggressive intervention.
"He started having seizures daily. We were on the seizure count, logging everything and watching his every move. It's a totally different world than what we were used to because we literally couldn’t take our eyes off him,” Kelly and Peter explained.
Following the worsening of Tyson’s seizures, he was referred to Dr. Coorg, a neurologist at Texas Children's TSC Clinic at main campus.
"When we started seeing Dr. Coorg. I remember us going in to meet her, we left that appointment feeling relieved, like we can do this. She made us feel so comfortable and reassured that Tyson would be ok," Kelly remembered.
At the TSC clinic, Dr. Coorg and Tyson’s parents worked hand-in-hand to find the best medication regimen that would get Tyson's seizures controlled. He also began to attend preschool to help keep him progressing socially.
Things did not improve for Tyson though, instead, his seizures became more aggressive and lasted longer. He had focal seizures up to three times a day; some seizures even stopped his breathing, which kept him from school and from feeling like a normal kid.
“On bad seizure days, we would have to change all our plans for the day, so he could have the rest he needed and as little stimulation as possible,” Peter recalled.
There was a need for a longer-term intervention.
In December 2017, Dr. Coorg suggested a video EEG of Tyson’s brain be done in the Epilepsy Monitor Unit at Texas Children’s Main campus. This EEG showed the tuber that was causing his seizure was deep in his brain, next to his motor and sensory cortex, leaving brain surgery – a procedure Tyson’s parents dreaded – as the only long-term solution and only possible shot at becoming seizure free.
While Tyson was in the hospital for his video EEG, Kelly met Angie, a mom from Nebraska whose child also suffers from TSC and who recently underwent brain surgery. They immediately bonded over their situations. Angie shared her experiences and helped Kelly feel more capable to walk through whatever lay ahead.
“She got me hooked up with all the organizations, alliances, and support groups. She’s my angel. There is a sistership between us that will never be broken,” Kelly said.
Angie connected Kelly with several resources for TSC parents and spoke fondly of her child’s neurosurgeon, Dr. Howard Weiner. After doing a bit more research, Kelly and Peter felt more comfortable with the idea of surgery.
“When we met Dr. Weiner, who would perform Tyson’s surgery, there is no way to describe how we felt except total and absolute, 110%, at peace with this decision. We felt hopeful at that point. So, we decided to move forward and to trust Dr. Weiner with our son, Tyson,” Kelly recalled.
On June 4, 2018, at 2 1/2 years old, Tyson had his first craniotomy with EEG grid, strip, and depth electrodes placed on and in his brain to really narrow down his tuber location. Over the subsequent days Tyson had the tuber causing his seizures removed. Tyson’s surgery did not come without its own challenges. There were fears that Tyson could lose function of the left side of his body, more specifically, the function of his left hand and arm.
"After all the brain mapping data came in, the epileptology and neuro-surgery team felt confident that if there was a deficit, it would most likely be to his fine motor skills, not gross motor. The idea of him not being able to use his hand to throw a ball scared us, but seeing him not breathing at times because of the seizures scared us more.
When they brought him back from surgery, I immediately grabbed Tyson’s left hand and told him ‘squeeze my hand, squeeze my hand.’ I needed to feel it. And he did! I’ve never cried so hard in my life! Peter and I hugged and felt a huge weight lifted, it was the most joyous moment for us as parents. Our boy was going to be OK,” Kelly recalled.
“The first night in ICU, I watched the EEG monitors like crazy to see if I could see any seizure activity, although I wasn’t 100% sure, I was pretty certain what I was seeing was good! Then day after day the epileptology team would come in with seizure free reports, we would high-five every time! It was like a party in our hospital room,” Peter remembers.
Tyson recovered very quickly from surgery, he spent just over two weeks in the hospital before he was released and hasn’t required one day of therapy since.
Tyson walking after brain surgery at Texas Children's Hospital
"I’m extremely thankful. Tyson is really something special and has changed a lot of lives with his story. He bounced right back and we went home having that weight lifted from us. We were in our new home, ready to start our new life," Kelly recalled.
Since surgery, Tyson has been 100% seizure free! His dad taught him to ride a bike just six months after surgery, he is back in school, being a kid, and now has a new best friend. He continues to get yearly MRIs and EEGs.
“Life is good now. We can take him to do fun things without worrying. We were able to wean off one seizure medication already. We’re just taking it day by day and enjoying this NEW normal post surgery. We truly owe everything to our team of doctors at Texas Children’s. It was definitely a combined effort from all the teams and we wouldn’t have the life we have today without them,” Kelly explained.
Kelly is also actively involved with empowering and connecting families dealing with pediatric epilepsy surgery.
“I feel it’s my mission to be there for those families who travel here from all over the country seeking care for their children. So, when they are in Houston, I come up to the hospital to be a source of hope to them like Angie was to me. These families are amazing and the strength and resilient nature of the kids is by far the most amazing inspiration,” Kelly said.
Support means everything. If your child is suffering from TSC, get yourself armed with good information by joining pages and groups of other parents.