Cooper was 6 weeks old when he was diagnosed with Tuberous Sclerosis Complex and Epilepsy, and 10 weeks old when he was diagnosed specifically with Infantile Spasms. One Friday morning when Cooper was about 6 weeks old, he started doing this odd repetitive movement where his arms and legs would very briefly extend outwards. It happened once or twice in the morning, but by late afternoon these movements started happening multiple times within an hour. It was odd enough that we decided to bring Cooper to the emergency room, where he had a CT scan. Masses in his brain called tubers were found and Cooper was diagnosed with Tuberous Sclerosis Complex (TSC). Sometimes, in some ways, life now seems broken up to before this day and after this day.
Our neurologist at the time felt that the seizures Cooper presented with were focal seizures and we started on the drug phenobarbital. We didn’t see the odd movements anymore for about a month. Then one Tuesday I started seeing Cooper’s body repetitively tense up and his face would momentarily look pained. We called our neurologist right away, and he encouraged us to wait until an already scheduled EEG appointment that upcoming Monday. That EEG showed a specific pattern called hypsarthmia and Cooper was diagnosed with Infantile Spasms. If I could go back, I would have pushed harder for a sooner appointment. I would’ve brought him to the emergency room if I couldn’t get a sooner appointment.
Over the next year we would try more drugs; Vigabatrin, ACTH injections, Keppra, Topomax, Clobozam and CBD oil. Nothing worked. Or what did work, only worked for days or a couple of weeks before we saw the seizures come back. It was horrible. Over this year, Cooper’s first year of life, we would only see glimpses of him. Maybe for a few minutes here and there each day. Then he would be lost again, in the seizures and in the medication. Stalled development, regression, so few smiles, minimal eye contact, floppy muscles and just constantly irritable.
We eventually got connected to SickKids Hospital in Toronto and a Clinic that specializes in TSC. They have been fantastic. The team at SickKids suggested the ketogenic diet, after both the Vigabatrin and ACTH injections failed to stop Cooper’s seizures. We had heard about the ketogenic diet, and we were both hopeful and sceptical at the same time. How could a diet stop Cooper’s seizures when SO many medications couldn’t.
There was a wait to start the diet, an excruciating 3 months.
Cooper was just over one when we finally started diet. He was still breast feeding and not taking a bottle or sippy cup well. He was also on a fairly high dose of the drug Topomax, which was reducing his appetite. The team at SickKids felt that a gastrostomy tube (g-tube) would support us in administering the diet effectively so Cooper could get all his water and supplements each day. So we made the simultaneously very easy and very hard decision to go through with the surgery so Cooper could get a g-tube.
It’s interesting, because Cooper had to fast many times in his first year of life (mainly for sedation required for tests) and each time he fasted we always felt he would then go on to have better controlled seizures for the next day or two. Cooper had to fast leading up to starting the diet, so we already felt like that day we were seeing less seizures. The second day of the diet, while we were still at SickKids so Cooper could be monitored and we could learn the diet… we saw NO obvious seizures. Zero. Before the diet started, Cooper was having 20+ seizures every day. Over the next 3-6 months, there were a few days each week where we felt maybe Cooper was having a brief absent seizure, but we are still not sure. Since the day we started the diet, we have not seen any obvious seizures. That was just over one year ago.
More importantly, since starting the diet, Cooper is back. We see his personality ALL day now. He is alert and focused and engaged. His eyes are bright. He smiles and giggles and plays and learns. What we always knew was lost in the seizures and the medications had now been found.
Cooper is on the Classic Ketogenic Diet. The diet is absolutely a commitment. And there is absolutely a learning curve. But it is absolutely doable. It quickly becomes your new normal. Prepping, weighing, monitoring ketones – it can seem overwhelming at the start, but it quickly becomes a part of your routine. Cooper gets his fat mainly from avocado oil right now. He eats eggs, chicken, avocados, cheese, cottage cheese, blueberries, raspberries, apple sauce, yogurt, and sugar free jello! The list goes on and on. He also has a morning and night bottle, made with KetoCal. Cooper takes all his food and bottles by mouth. He gets his oil, water and supplements through the g-tube. The g-tube has been AMAZING. There has not been a day that we second guess that decision. It gave us the best chance to administer the diet in an effective way… so that we could determine if it was going to work or not.
It’s still hard to believe, that we are now just over one year seizure free. And now medication free as well. We do not know what the future holds for Cooper, but we do know that we will be forever thankful for the Ketogenic Diet… for this past year of seizure freedom and for giving us our Cooper back.
Thanks to The Charlie Foundation for Ketogenic Therapies, for all that you do, and for the opportunity to share Cooper’s Story.
If you’d like to hear more about Cooper’s Story, you can follow along on Instagram @thisiscoopersstory