Saturday, October 10, 2015

The past three months have been hard. Almost as hard as those first few months when seizures began.  We started the keto diet in hopes it would help get through the keppra wean.  It caused severe insomnia so this weekend I decided enough was enough after almost falling asleep driving the older ones to school.  This weekend as we've transitioned back to a modified keto diet with more carbs and less fat, Paloma has had several seizures.  I can't help but feel guilty watching her seize thinking it's my fault because I couldn't deal with the insomnia.  This journey never seems to get any easier.  I never know if I'm making the right decisions.

For my magazine writing class I had to submit an article for publication to a magazine of my choosing. I chose The Sun.  My Hemingway loving professor ripped my essay to shreds and cut 600 words. "To wordy" he said.  I happen to like words. I don't think it stands a chance for publication.  To much telling and not enough showing but I'm glad I finally sent something out and I have learned a lot in my class so far. I wanted to learn the technical side of writing. I have the passion and ideas but if what I write doesn't come off with clarity and wisdom I know it will be never be anything more than narcissistic ramblings. 

I've always loved fall. I'm trying to enjoy it despite the exhaustion and hopelessness I've felt lately.  This was two years ago. Right before the first seizure.  Before things got hard.  I enjoyed it fully. I must have known something was coming. 


  1. You are doing the right thing. I love you JRR

  2. I hate to bring alive an old thread, especially if this is a wound that has closed over. My son almost died at two months. He recovered with severe brain damage and now has West's syndrome. The page I came here from you were trying to use essential oils. My friend who introduced me to doterra helped me make an oil recipe of about 20 oils. I had just come off a 60 day water fast and prayer, and he just started keto. He was seizure free for three months. Then they slowly started to return as the oils ran dry. Have you had any further success using oils and what brand did you with? On an aside, Steven King has a decent book on writing called ... well On Writing. I wish you in your endeavors. Sincerely Patrick Walker

    1. Hi Patrick, thank you for leaving me a comment. I'm sorry to hear about your son. We also had success with using oils that first year. I used Frankincese from Dottera and it lifted my daughter out of her fog she was in from phenobarbital. It also stopped a couple of smaller non convulsive seizures for us. I'm no longer using them on a daily basis because my daughter is doing well and her seizures have been reduced to a couple a month. We actually ended up moving to a legal cannabis state in order to get access to thc oil. It has made the biggest difference for us. I'm no longer having to use rescue medications. Before we were using them 4 or 5 times a month and in a downward spiral of needing more and more. I'm also doing Fiji water (sounds weird I know) but a lot of us Dravet families are having success with it. We tried keto and got three months sf but it was so difficult to do with my daughter. She loves food and and eats all day long....Just to give some hope, my oldest daughter had severe brain damage, she was hit by a car and was in a coma for a month. Doctors gave me no hope. She has mostly fully recovered. Kids brains are very resilient. I know it's not the same thing you're dealing with but don't loose hope. Keep doing what you're doing, researching, praying etc. I wish you guys the best. Also, weird I'm reading that book right now!