Meet Tobias - An Awesome Doose Warrior

Tobias was a typically developing toddler until his first seizure at age 2 years, 4 months. We have no family history of epilepsy let alone known there were other types of seizures besides tonic clonics. So when Toby had his first “episode” and walked into a wall, we chalked it up to it being bedtime. We had a couple quirky episodes happen until one time he was at the neighborhood rec center and out of the corner of my eye, I saw him fall. Seemed odd but he picked himself up and kept running. Then it happened again and he arched his back. That’s when I started to walk towards him and met eyes with another mother also walking towards him- her odd expression said it all and it made me run over to Toby. This total stranger just said, “I think you should take him to the hospital”. Neither of us knew what was going on but we just somehow knew that something was terribly wrong. Little did we know, that was the start of his drop attacks.

After that we started the spiral of Doose- the massive storm of seizures soon took over. Myoclonics, absence, atonic drops, tonic clonics, and even tonics. Diastat to stop the clusters- he would have up to 14 tonic clonics in less than 24 hrs. July 4th that first year, literally overnight, they went from only daytime seizures to mainly nocturnal tonic clonics.

I thought the worst was that first year, so many seizures, so uncertain of what will come next. But after 6 more years of nocturnal tonic clonics (10-20 a month for years!), this seems worst, as this is So. Frustratingly. Stubborn. Nothing seems to touch these nocturnal tonic clonics. As I joke, Toby is a great guinea pig because we are blessed he does not have many severe med side effects, which allows us to experiment with many treatments. We have tried over 12 AEDs, 2.5 yrs of keto diet, CBD, and then Epidiolex, VNS, high dose valium, IVIG. Hardly any caused him severe side effects. But all of them failed.

Toby is extremely drug and treatment resistant. We do not know what will come next- our newest trial of primidone has shortened his tonic clonics greatly so we are happy right now. But we’ve been here before…

Tobias now has intellectual disability, ADHD, and autistic tendencies. He has low muscle tone, low strength with an unsteady gait, and gets many therapies. He is 9 1/2 years old and is at a PreK-K level. Like his seizures, Toby seems to have plateaued here.

But Toby also has an infectious laugh and a wicked sense of humor. He is adored by his big and little brothers and all feel lucky to have him as a brother. I do not exaggerate when I say he is a happy, extremely lovable child. We fight the fight of pushing him to learn to function in this world vs just letting him just be happy!

His smile is what keeps me going. I have not given up but I am very accepting of him- like it or not, Doose is a part of Toby!