Thursday, October 29, 2015

Did you give her the Marijuana?

That time a new friend overheard me talking to Josie's nanny on the phone and was like, "huh?"

I said, "Oh did you just hear me ask if Josie had her marijuana today? I'll explain."

It's been more than two months since we started Josie on CBD oil, the marijuana-derived oil that has been called the "Miracle Cure for Children with Severe Epilepsy."

I've read the stories and watched every local and national news report on Charlotte's Web.
I was hoping this was going to be the answer. I even thought about moving us to Colorado until it became legal in New York. We'd have the magic bullet. The idea was that we'd see drastic improvements from the CBD oil and then we could start to ween her off the other three heavy-duty anti-seizure meds she is on.

Well, I can't say it's the magic bullet for Josie. And I can't say it isn't helping at all. The one thing I do know is that I don't know what is helping or not.

The first two weeks on CBD were promising. She was seizure-free. And then she had one. It was so mild and only lasted a few minutes.

I have been working closely with the Nurse Practitioner (NP) of Josie's Neurologist on the dosage.

A little backstory/reminder, I switched neurologists about a year ago to work with the top doc at NYU Epilepsy Center who is also leading the study for Epidiolex, the pharmaceutical version of CBD oil that is currently in trials with children with Dravet Syndrome and Lennox Gastaut Syndrome. I was hoping to get Josie included in these trials, which I was told was a possibility, but as time went on, it was confirmed that the trials would not be opened to any child who did not have either of those syndromes.

Still, I am working with one of the leading epilepsy Neurologists in the world. When the law passed that I could get Charlotte's Web, the brand of CBD oil that was making all the "success" buzz, shipped to us, needless to say, I was pretty ecstatic. And to have our neurologist's NP guide me through the dosage is pretty damn awesome.

Anyway, we started at a super low dose of .1 ml. I even called our NP to say, "that can't be the right dose, I don't even have a syringe that skinny." She replied, "you'll have to get one ml syringes, it's the correct dose."


So we drew the littlest bit up, and with every seizure that occurred since starting, we would raise it by .1 ml.

And this is where it gets interesting.

The more we'd raise the CBD, the more seizures Josie would have. We got to .5 ml and Josie started to have seizures just about every day. They were still mild, but way too frequent. So we started to reduce the dose, and now we're back at .2 ml and things are a bit better. She's still having these mild seizures, and some days they're not quite as mild, but the frequency is less.

When I compare how things were about a year ago to how they are now, it's clear that the arsenal of meds combined with, perhaps, the Ketogenic diet and CBD, have greatly helped control Josie's seizures. They are so mild that my new fear is that the nurses might miss them. And sometimes I'm afraid we are considering something a seizure that could just be her reaction to pain.

I'm pretty sure that happened the other night. She was moving uncontrollably and making sounds like she was gasping for air, and when her eyes got wide and she appeared to be tensing, we gave her the rescue meds. The thing was though, it didn't stop. She kept doing the same things and while the movements and sounds were not so typical of her seizures, the little tensing and wide-eyes were. After about ten minutes she let out a giant burp. And then she settled.

Oh, the trials of not being able to speak.

I often think, maybe there's one hair pulling in her ponytail. She can't fix her own hair. Maybe she has heart burn. Maybe her teeth hurt (we've exhausted that one). Maybe her belly hurts. Maybe she's just tired. Maybe she's bored. Maybe she hates the music I'm playing and wishes I would put something else on. Maybe she wants freaking pizza already and no more of that same vanilla flavored drink all day. Maybe she is crying because she wants to do more. Maybe she wants to go outside. She's almost four years old. She can be crying about anything.

She can't tell me, though. Not yet, at least. I often say to her, "Josie, please remember this one so you can tell me one day what it was you wanted to tell me."

I think she will.

Check out Josie's new ride!! This sweet pink Freedom Concepts bicycle was made possible by two incredible foundations who helped us get it. Thank you so much Cherished Creations and Spectrum of Dreams ! We promise to pay it forward.