uncharted territory

Minus eleven degrees outside. My mood is like the weather—icy, brittle, unforgiving, in need of a major thaw. On this first day of 2014 I wonder what lies ahead.

Yesterday, I picked up Calvin’s next month’s supply of Onfi (clobazam), one of his two antiepileptic drugs. A handwritten note on the bag containing it is a reminder for a pharmacist’s consult. Before speaking with her I already understood what it meant: that any change in dose or a discontinuation of the drug followed by reinitiation can cause a serious if not lethal rash called Stevens-Johnson syndrome.

In bed alone, Michael at a New Year’s Eve party, I’m reminded of the anecdotal evidence that medical marijuana can affect Onfi’s blood levels causing its side effects to increase. I wonder and worry if, when I finally start Calvin on his medical marijuana tincture, he’ll suffer worsened side effects from the Onfi—the dizziness, the drooling, the decreased muscle tone, the irritability. I wonder, too, since benzodiazepines and their relatives can cause respiratory suppression, if he’ll have trouble breathing at night or during a seizure and simply expire.

I’m not going into this green therapy lightly. I’ve done months of research trying to find the right strain of marijuana, the appropriate tincture and the best supplier I can find and trust. I think I am almost there, but when I am, there will be the question of dosing. What is the right dose for a kid like Calvin with his unknown kind of epilepsy? There is no hard and fast protocol. This is uncharted territory for parents and for doctors. Calvin is the first patient his neurologist recommended for the treatment, and it took some convincing before he did.

In the meantime, we had all of our blood drawn this week for what’s called a first tier exome sequencing—a test to search for any underlying genetic cause for Calvin’s seizures. Calvin is, again, charting new territory in that he is his neurologist's first patient to undergo this type of testing, which I'd learned about from a friend about a year ago. There are no guarantees they’ll find something, perhaps won’t even be able to decipher the results since the test reveals more about the nature of the DNA than is currently possible to interpret.

All I can do is to hold out hope, to work on my patience, continue to quest for knowledge, chart new territory and try to melt my frigid mood into something malleable, into something that won’t shatter under the weight of it all.


  1. Such a heavy load! You will make the right decisions. I wish you the warmth to melt your mood and to return the flexibility you need.

    RR Julia

  2. Happy New Year, Christy! May 2014 be the year that Calvin's seizures are brought under better control (fingers double crossed for the "green") and blessings for your peace of mind.

  3. I hear you on the icy mood - we started our New Year's day with a ketogenic breakfast, morning seizures, a pull-up full of *#$%, with a necessary shower for her and I that made me lose my appetite, followed by more seizures, more *#$%, a messy carpet, and then trying to get Topomax down in some jello. It took me until noon to thaw that ice...

    I read about your earlier trepidation of Calvin's impending puberty. We have gone through that, though with a girl, and we believe that no matter what medication she was on, her puberty trumped it. She started her period last July, and has since had 2 depo-provera shots, her second one taken by her body well which has stopped her period, though we're hoping that the progesterone will continue to level her hormones. I don't know about boys and their hormones and how or what could help regulate it - probably marijuana... ;) But no matter what meds she was on, she would go through episodes - usually two weeks straight of full-on, relentless seizures, with hospital stays. In the summer of 2012, we got full custody of Hailey (she is my step-daughter) and we had had enough of the daily meds that caused her to sit for hours like a zombie and drool, with no ability to concentrate, no motivation, and no emotion - high dosages of Keppra, Lamictal, Topomax, Clonopin, and Risperdal (put on years prior for behavior). I read about Risperdal's side effects from adults. Immediately we took her off that. Next was the Clonopin. We started the Keto diet in the fall of '12. We still don't know if it works... Keppra was next. Hailey couldn't take the sugary Keppra liquid so we changed to a pill, but the bitterness was out of this world, and so we had to open vials of injectable Keppra and freeze it into coconut oil. And the injectable Keppra was not covered through insurance. All around pain... Keppra was done that fall. Lamictal was next in early 2013. It was a long wean, and by November she was off completely. We introduced Onfi in March 2013, we found it didn't work even at 30mg daily, and so she was off by the fall. Topomax was reduced before the keto diet start, and we will wean this spring. Her small amount of Topomax and a reintroduction of Clonopin at a higher dose is what she is on now. With a change in doctor due to the keto diet we heard in a low whisper that she has Lennox-Gastaut. So many medications, so pointless.

    My apologies for the long post, but I wanted to share the meds pain, and my belief that until we can get it down to one med we have no idea what, if anything, is working. I'm convinced as you are that marijuana is the answer. Whatever fight I can help you with, as well as my own fight down here in the most non-liberal state of TX, I'm on board. If these god#$*% politicians had to deal with what you and I do on a daily basis, laws would be passed in a heartbeat.

    With wishes of a hopeful 2014,

  4. thank you amy. i wish the best for you and hailey. we went off of the keto diet after a year or more and it took a long time before he was eating a normal diet. it didn't put a dent in his seizures and was difficult for everyone. good luck!

  5. crossing fingers that this will help.

  6. Christy - how long did it take to wean off? and to get on a more normal diet? what was the process? what ratio was Calvin doing? I hear you on difficulty... bordering on moments of insanity...

  7. we weaned off of the diet by .5 ratior (i.e. from 4.0:1 to 3.5:1) every few weeks if i recall. we simply changed his meals in the ketocalculator by adding back carbs and protein and scaling back the fats. he was on the 4:1.

  8. Thank you for the information. I can imagine the difficulty of the 4:1. We haven't gotten higher than 3:1 or she gets excessive ketones. Looking forward to weaning her this summer and giving simple cereal for breakfast :)