When diagnosed with Lennox-Gastaut syndrome, our son, Brian, was still developing normally. Every day built upon the previous day, which was amazing to watch. His episodes consisted of dozens of small tonic seizures, but he usually recovered quickly. The hope was that we would maintain this upward trajectory.
His development plateaued around age 3, but that was understandable given the diagnosis. We hung on to hope that Brian would be an exception, not the norm. We were struggling to control the seizures with different medications, but his quality of life was acceptable.
As Brian turned 4, his development was progressing. Maybe he would need to live with Mom and Dad forever, but he could still communicate and learn. It could be worse.
In 2019, it got worse. The regression commenced. By March, Brian became nonverbal. The last time he spoke for me was when he said “all done” while sitting on the potty. I can still hear it.
Meanwhile, the entire time we were adjusting medications, hoping to find a balance. We tried a ketogenic diet, but it didn’t help. Brian’s gross motor skills slowly disappeared. He babbled and vocalized, but there was no more pointing at treats in a grocery store and saying “cookie.” No more pointing at an airplane in the sky, or laughing when the SpongeBob music came on. He stopped dancing to Kiss’ “I Was Made for Lovin’ You.” When he wasn’t sitting and stimming, he was seizing.
By January 2020, Brian’s condition snowballed. He was drooling constantly. His will to eat was lost. He lost 10 pounds in a month. We were ready to get a feeding tube implanted. By March, he was barely able to walk or sit up. He was seizing all day. I was sure one of these seizures would kill him.
We changed medications, and miraculously, he regained his appetite and ability to walk! He had a month of seizure freedom, but with the new medications came a dangerous elevation of liver enzymes. After lowering one of the medications, the seizures returned.
We’ve increased the medication slightly, but last weekend, Brian had a tonic seizure that lasted two minutes and made him turn blue. I held his hand — again thinking this was the end — while Mom scrambled for the rescue medication. Thankfully, he snapped out of it and caught his breath before needing the medication.
I don’t see how anything will get easier. Brian is just going to get bigger, and we’re just going to get older. Daily tasks like bathing, brushing teeth, toileting, and lifting him into the car and into bed have become more difficult. I’ve noticed that his spine seems to be curving from extended periods of sitting. I am trying to keep him on his feet as much as possible. No more complications, please.
Brian is almost 4 feet, 6 inches tall and weighs 70 pounds at age 5. I can’t imagine how massive he’s going to get, or how much more the seizures will damage him. I know there are assisted living facilities, but I can’t expect anyone to care for him with the same love that we give him. I wouldn’t ask anyone to feel obligated to tickle him or give him kisses all over his face.
I’m terrified that I may outlive him. I never planned on burying my own child. I’m also terrified of the thought of dying before Brian, leaving him to rely on the kindness of strangers as an old, disabled man. I don’t know which scenario is worse.
I will not give up, but I feel like our best days are behind us.
Our window for big sister Coralynn to have a sibling that she could confide in, grow with, and share experiences with has closed. She is a great help, but I can’t help but cry for the happy childhood she never had with her brother. Now should be the best time for them, catching bugs and playing ball. Instead, she’s drawing up medication, gathering essentials, and watching him become slowly damaged each day.
Our window to create another child of our own is still technically open, but I would never dream of doing anything to take away the attention and care that Brian needs. We don’t want a do-over, we want to get this right.
We only get one chance to live this life, and I’ll give it hell no matter what. It’s not about me, it’s about Brian’s happiness and well-being. It’s hard, but none of us have it harder than Brian. I must be realistic. I can’t pretend that this is all for a reason, or a special plan. It is what it is.
If we can fight just a fraction as hard as Brian, we’ll see this through until the end with our heads held high. No matter how hard life gets.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
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