After a traumatic birth, Peter seemed super healthy. At 11 months while driving I looked in my rearview mirror and caught a glimpse in his baby mirror of what looked like an eye roll up to the left. I thought I was crazy but then it kept happening. We took him to a well-known pediatrician in Toronto who said I was overreacting, but when I insisted on getting it checked out, she put through for an EEG.
It was months until I got an appointment and the eye rolls were happening all the time. Finally, the doctor called to apologize for disregarding my concern as the EEG showed seizures. In May 2009 Peter was diagnosed with infantile spasms.
Over the next few months Peter went from a happy bouncing boy full of life to having 200 seizures a day. Head drops, eye rolls, total loss of control. We started medications and Peter was either always sleeping or walking like a drunk man.
At the age of 3 Peter was diagnosed with Lennox-Gastaut Syndrome (LGS). Which is the worse type of epilepsy as it is life long, always evolving and marked with intellectual disability. Peter didn’t have localized seizures. They were everywhere in his brain. Our world was shaken and unless you’ve lived this, it was like watching the future dreams we had for our boy die.
We kept fighting, researching, talking to anyone for answers. Our smiley boy, full of light was replaced with someone whose light kept flickering. For the next five years we went through 9 different drugs, the ketogenic diet, emergency visits from epileptic falls and 5 helmets for protection. We didn’t know anyone else with LGS, so we didn’t know what his future looked like.
We saw less and less of friends and family as Peter’s safety and care was overwhelming. We didn’t go out much and we were lucky to have our parents and siblings for support. It took a toll on all of us. In 2012 Peter had the VNS surgery. This is where they run a wire up the vagal nerve and a monitor sits over his heart. As the heart increases suddenly (indicating a seizure) it sends an electric impulse to the brain to stop the seizure activity. We slowly increased the electric strength over the next two years. I also insisted he have nitrazapam removed from his meds as it made him sleepy all the time which was a seizure trigger. The doctors pushed back but he was finally weaned off of this drug by age 9.
Finally at almost the age of 10, Peter’s drop seizures went from 15-20 times a day to 10 to none! He was still having absent seizures (blank staring) but this was a WIN!! A decade had passed with all of us holding our breath, not sleeping to finally being able to breathe a little. It’s like a light switch sparked and we could see his light shine again. We all started living again. It’s not gone, it never will be, but I pray Peter never goes backwards and keeps taking little steps forward. Maybe he’ll even call me mom one day or be able to communicate what hurts.
We have spent tens of thousands of dollars, remortgaging houses, to support therapies over the years to help get him to where he is. TODAY Peter is 16, has absent seizures daily. He is on Valproic Acid for seizures and Clonidine for behaviour. He walks and moves like a teen but mentally he is 2 years old. He is in diapers still and does not speak. He communicates with sound and gestures. He is super smiley, silly and happy and so loveable but also can be aggressive, throw chairs and hit. He can not be left alone as he could be a danger to himself. Imagine a toddler that is over 5ft tall! As he is in puberty, we closely watch for seizure changes as his brain is still developing and changing, which means the seizures could change too.
We hope he will not regress and slowly become more intellectually able. We hope we can continue to care for him, but know realistically that will become even more challenging.
Since I’ve learned of the LGS Foundation in 2017, my world and exposure to families with LGS has doubled. My biggest advice to new families is to connect with others. Reading a website is nothing compared to the emotional support and hearing first hand what another LGS warrior and their family is going through. Learning tricks, tips and strategies first hand is a blessing.
- Written and submitted by Peter’s Mom, Antonia