Austen was born absolutely perfect, the youngest of three, born at home after only 3 hours of very intense and insane labor. Her brother and sister are both 100% healthy so it never even cross our minds that Austen would be any different, and we were completely right-until she was 5.5 months old.
I think that night will be ingrained into my mind forever, her brother had woken up needing a diaper change and his crying had woken Austen up. When her dad asked me what was wrong with her I thought he was asking why she was crying, it wasn’t until I came back into the room that I realized she was seizing. Over the next 48 hours she had three more seizures, the final one lasting 35 minutes. She was coded, she was intubated, and she spent five days in a medically induced coma.
Two medicines, three hospital stays, and over ten seizures later I came across Dravet during a google search in early February. Something in me knew right away that this was it, I had found what was wrong with my baby. I can’t explain the frustration I felt when her neurology team refused to test her. ‘It’s so rare.’ ‘The chances are so slim.’ ‘We have a lot of things to rule out before we even think of that option.’ Heck, the team was still arguing among themselves over whether these were febrile seizures or she actually had epilepsy, so I don’t know why I was surprised.
In March we decided to switch to a new neurologist and were given an appointment six months out. Thankfully we have amazing friends who also saw that neurologist. She was so worried about Austen that she decided to use her daughter’s appointment the following week to talk to the neurologist about her. Next thing I knew our appointment was moved up from 6 months to 4 days, Dr. H was almost positive Austen had Dravet syndrome-and he wanted her tested right away. May 30th , days after Austen turned one, the results were in: we were right.
As odd as it sounds, the diagnosis was a huge relief. This disease is catastrophic, and we knew we were only seeing the tip of the iceberg at this point. But we had a name, we had an answer, we knew what demon we were fighting against. I find that demons are a lot less scary when you can look them in the eye.
My husband and I had come across cannabis as a treatment option almost as soon as her seizure episodes started. We are pretty big supporters of science and medicine, but I would be lying if I said we weren’t worried about the side effects of some of the anti-epileptic drugs they were looking at putting our baby on. Phenobarbital, a barbiturate I gave to my baby twice a day, made her sleep all the time and did not stop her from seizing. We soon switched to Keppra which also did not stop the seizing, and also puts her into horrible rages and mood swings. Every time she had a seizure her meds were upped, it was a vicious cycle that it seemed we simply could not stop.
Soon we were talking about adding more medications, drugs like Onfi (with side effects like confusion, hallucinations, and shortness of breath), Dilantin (trouble breathing, slurred speech, nervousness), and Trileptal (changes in vision, tremors, problems with speech and balance). To us some of those side effects were worse than the seizures they were trying to prevent, and cannabis started looking more and more like our answer. But the only problem was that our home state, Texas, did not allow it. We were allowed CBD (a low THC cannabidiol), but kids with Dravet are known to need additional THC to gain seizure control.
We got Austen’s diagnosis on May 31st, 2016, on June 21st we arrived in Colorado Springs. Between July 9th and July 10th Austen had five seizures, triggered simply by getting new teeth, and on July 18th she was finally able to allow THC to her CBD regime. We were told to expect to wait 3-6 months before we saw significant results in Austen’s seizure count, but that has not been the case. Since July 18th Austen has had only two ‘big seizures’ and a handful of myoclonics (or eye flutters). Her last seizure was August 21st, 2016, and as of today (October 1st, 2016) Austen is 41 day’s seizure free.
Not only has she beaten her previous seizure free record of 36 days, but she has also dealt with both a cold and a stomach virus in that time. For the first time in her life Austen had a fever and did not seize. That is huge. The reality is that at 16 months we are currently only seeing the tip of the iceberg when it comes to Dravet, and I know that THC is not a guarantee. But I also know that it is working. It’s not keeping my baby asleep all the time like phenobarbital did, it’s not making her go into rages like the keppra does, and it is keeping the seizures at bay longer than either drug ever thought of doing.
Austen might not ever be 100% seizure free, that’s our reality and I am okay with that. But for now she is, and I am going to be thankful for every day, every moment that cannabis keeps her that way.