Novemeber again...

Monday, November 2, 2015

November is epilepsy awareness month. A year ago just having arrived in Utah I was full of hope.  We had just been approved to try cannabis oil with Paloma. I was disappointed when I found out our only real option would be hemp oil.  Oil that we drove to Colorado last winter and brought back illegally because the law prevented us from being able to legally obtain it.  I know, it makes no sense. They decided to start shipping it right after this but its still a huge grey area, the shipping of hemp oil across state lines.

 Paloma's mind had been so dulled from the phenobarbital when she started the oil I immediately noticed a light switch switch on in her eyes.  It helped us wean phenobarbital completely and she is still developmentally on track which isn't always the case for Dravet Syndrome. There have been times when I was absolutely sure the oil was working and I touted the benefits of it. But the reality of her seizure chart this past year speaks for itself.  She has had 55 seizure and counting since we started the oil, I've called 911 six times, shes been airlifted twice and intubated once.  Much of that time was spent off and on weaning meds which has contributed to the seizures. But overall I think its safe to say its time to explore other options than hemp oil.  

Many of Paloma's seizures this year were also caused by things like looking at the sun, playing, running, taking a bath, swimming in the ocean, you know normal kid things.  I've tried my best to keep all the triggers at bay, but the seizures keep coming, triggers keep changing.  I've had in the back of mind all year my last resort would be to try the ketogenic diet again.   We tried it for three months carefully measuring all her foods and making sure no one left so much as a crumb laying around. We had to hide the trash can because she tried to eat anything she could get her hands on.   She screamed and threw herself to the floor everyday.  She had severe insomnia.  Seizures got better but for my own mental health and the fact I almost fell asleep taking the kids to school one morning I decided I had enough.  

So here we are a year later.  I would be lying if I said I hadn't lost much of the hope I had last year.  I'm planning on trying another oil soon. But, we are on our own, there are no doctors to give us advice on how much to dose.  We read on the internet, talk with other parents, go slow and hope we are doing the right thing. Many of us are risking being arrested for trying to help our kids. I can't help but think what if the Air Force had sent us to Colorado like we'd asked.  In Colorado there are far more options and doctors who are familiar with dosing and strains.  I would walk to the moon and back if I thought it would stop the seizures. 

 A friend whose child recently had a small and hopefully one time seizure asked me how I'm able to stay calm when Paloma seizes for upwards of an hour.  I have sort of a zen like approach to it now as cheesy as it sounds.  I know if she dies, she dies and I've made peace with that. No doubt it will hurt and nearly kill me but every time I stand over her hospital bed and watch nurses and doctors scramble over her trying to get her little body to stop shaking I feel a sense of peace and detachment from my feelings in that moment.  I know if she goes at least shes not suffering anymore.  

At church we talk about Lazurus. Jesus raised him from the dead after 4 days, an impossible feat and all I can think about is why can't he heal my child's brain.  Why can't he heal all the Dravet kids I've come to love this past two years brains.   I've taken comfort in Buddhism lately.  It brings me a comfort about suffering in a way that Christianity hasn't been able to.

And so here we are a year later, I'm less hopeful.  I have no more tricks up my sleeve to try and make seizures stop. I know if worse comes to worse I won't be able to keep doctors off my back about not adding more meds.  But in some ways I'm happier, I don't let each seizure devastate me anymore. She has seizures and we move on and try to live the best we know how.  We don't take the days for granted.  Paloma is full of life and because of that I try to be as well.

3 comments:

  1. I'm here, witnessing and abiding with you. Don't lose hope. Things always shift and change -- both the good and the bad. Your girl will be okay.

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  2. Hugs my amazing friend. My thoughts and prayers are with you and for you.

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