Elijah was born healthy on April 14th 2002. He hit all of his milestones on time or early. He smiled a huge, cheesy grin at anyone that came into his view. He was HAPPY. and HEALTHY. and PERFECT. And we were SO lucky. We didn’t know it- but we did enjoy it. The memories of that first year are like a foggy, beautiful dream. A dream of a different child that we loved with all that we had. Not a “better” child. and no more loved than the child we have today- just so different.
When our little toddler was just getting stable on his feet, and starting to talk and climb on furniture, around 15 months old, things changed. He started having seizures. Every day. All day. He was diagnosed with late onset Infantile Spasms, and he lost (not quite) everything. He stopped walking, talking, smiling, eating, making eye contact, crawling, rolling over. Over the course of a few months he returned to infancy. And we didn’t know if he would ever come back.
He went through two, 3 month long, rounds of ACTH- a steroid that made him so swollen, he could barely open his eyes. It shut down his immune system and he got horrific sores and infections. We couldn’t leave the house at all for months on end. His blood pressure skyrocketed, and he was on 3 different medications to try and stabilize it. The seizures returned after both rounds of treatment.
We spent the next year trying every anti-epileptic and anti-convulsant drug they threw at us. Any combination, and any dose. He had slowly learned to walk again- twice- but the seizures just kept getting worse, and Elijah was lost in a fog of seizures and medications.
When Elijah was 3 1/12 years old, he had his first two brain surgeries. They opened up his skull and sewed a grid of electrodes to his brain to map exactly where the seizures were coming from. He laid in bed for 5 days with wires coming out of is head, in excruciating pain. Then they opened him up again, and removed his left temporal lobe and hippocampus. (about a lemon sized piece of his brain... And for nine glorious months, we finally had our son back!!! He started to say some words, and even said “Mama” for the first time! He was HERE again. His eyes were clear and focussed as he took in the world he had been missing for so long.
When the seizures returned, we were beyond devastated. For 6 months, we watched him slip away from us again, failed by western medicine- until a talented team of naturopathic doctors were able to stop his seizures again! For another 9 months we had our boy- learning, growing and living as he should!
Then the seizures started again. Slowly, at first but progressing as always until he was having hundreds a day. He spent 18 months on the ketogenic diet- a very extreme anti-seizure diet that puts the body into a state of ketosis by keeping his food intake to an exact, (weighed every piece on a gram scale), 4:1 ratio of fat:carbs. He had surgery to implant a VNS, (like a pacemaker, but for the brain), that sits in his chest, sending 30 seconds of electrical current to his vagus nerve in his neck every 3 minutes. He went through more drug trials, and we flew to New York City to see the top epileptologist in the country- but nothing helped. At all.
In January 2010, Elijah had his 3rd and 4th brain surgeries. This time after a week of inter-cranial monitoring, they removed his occipital and parietal lobes. He lost half of his vision in both eyes, and recovery was hard- but he has been SEIZURE FREE ever since!
He is walking and talking and potty trained and happy and an amazing big brother. He will always be developmentally disabled because of what he’s been through, which just means that I will never have “empty nest syndrome” Make A Wish sent our family to Disney World for Elijah’s 8th birthday, just 3 months post-op, and it was the best week ever. This life is so unexpected, and so wonderful. Every day that he is back with us, with no seizures, is the best day ever.
I haven't updated this site in a while. I guess when things are going well, we're just living it and loving it.
Now that I have something to update, I kinda wish that I didn't.
Some of you are aware that Elijah's seizures returned in February this year. Just over 6 years after his last brain surgery. They started out as partial-complex (blanking out and staring) seizures. A month apart, and then a week apart and then every 1-2 days. Progressing in frequency and intensity, as his seizures have always done, historically.
He also started having larger, convulsive (tonic-clonic) seizures. He's only had 4 of those so far. 7 weeks apart, then 3 weeks, then 8 days- the most recent one was last Tuesday, and we are already getting so chill about it that he went to school after he recovered.
We've been waiting a bit to write about what's been going on, I guess hoping that there would be good news to share along with the not so good... And there is!
With the "thumbs up" from Elijah's neurologist, and the official medical authorization from his naturopath, we were able to start Elijah on CBD (medical cannabis) on May 20th! Since he's always been so resistant to medications, and has the VNS implant and done the ketogenic diet and 4 brain surgeries- CBD has always been next in our sights if the seizures returned. It's not easy to get, even in WA where it is legal for adults to buy it recreationally. But that's a whole 'nother rant for a whole 'nother blog.
At first, it almost seemed like the seizures were made worse by the CBD, but I am happy to report that as of this day- Elijah hasn't had a convulsive seizure in 6 days, and hasn't had a partial seizure in 10 days!!
I'm sure that we haven't seen the last of his seizures, but I don't mind celebrating little milestones in the meantime.
In usual Elijah fashion, he's handling everything like a champ. Before the last convulsive seizure, he was even able to call out to let us know it was coming before he fell.
So that's where we are. Thanks for checking on our boy!