Wednesday, July 23, 2014

A Wink and a Smile

That's what I'm grateful for today. A small joke--- then a look my way, a wink and a deliciously big smile. Michael has re- arrived!

I know our situation is not nearly as devastating as so many. And in the moment when I acknowledge this, I feel an emotion of my distant Catholic past---- guilt! And then... I let it pass.

It's okay that I want Michael to have a better life. It's okay to be upset when the seizure beast returns during the day after a 5 year absence. It's okay to not want to settle for what I have but to want more, much, much more for my handsome, smiling son.

Tuesday, July 22, 2014

ONFI, Seizures and Cars

Let me just get this out of the way first--- ONFI SUCKS! Okay. Moving on.

I returned from working locally yesterday to a glum faced husband announcing it had been a tough day. Michael was sleeping upright on the couch. Barry related that Michael had a seizure at the gym in the morning. "A seizure? In the day? While awake? Was he climbing the wall?" All fired at him in rapid succession as I tried to control the urge to scream at the top of my lungs. I' m sure I managed to use the F word in some shape or form to vent my anger. "No, he was --- in between climbs--- so he fell on the floor, which is soft", he added. He went on to say the seizure was relatively short- a minute and a half, that he declined the gym attendants offers to call 911, that Michael recovered well meaning he was alert enough after the seizure stopped to stand up on his own and walk out of the gym.

A little bit of salt was added to the wound when they arrived home. Afternoon meds were taken as usual. Then Michael announced he was going to take some Advil because he had a headache. Fair enough. However, instead of Advil he took his nighttime meds. Hence the groggy, drugged up guy I saw at 4 pm.

I can 't lie. I panicked. We haven't had one of these seizures in over 5 years. I placed a call to Ray at ROC, then one to Michael's epileptologist (in that order). Ray was pretty certain it was the ONFI wean, later confirmed by the doctor and Cindy Mitchell who had pretty much broken it down to the day and hour the drug we started weaning a week ago Sunday would be out of his system, effecting a rebound seizure. This sounds so methodical and calm but trust that it was a flurry of texts, emails, Facebook messages and lots of hand wringing. What to do now?

This is our dilemma: Michael has achieved some degree of normalcy in his life. Though he has to be driven there he is able to attend classes at Cal State San Marcos and he is on a pathway to getting a degree in Mass Media. While he would like to take more than one or two courses a semester, the cumulative effect of 4 prescription seizure meds and nightly seizures during sleep prohibits him from doing so. Recently he took up rock climbing at a local gym. When he was more coherent last evening, bordering on fairly alert actually, he told me had some of his best climbs yesterday. No need to examine what was going through my head when I realized he could have been suspended mid wall.

Anyhow- so we want to maintain this degree of normalcy as we embark on our cannabinoid journey. I love the changes we have seen with THCA and look forward to adding CBD at some point in the future. We chose to wean ONFI because of the experiences of others. I wanted it gone or at a lower dose before we move to CBD. So---- what to do? We 've decided to add back that  ONFI dose and wait till the full dose of THCA kicks in, things have a chance to settle, and by that I mean we're back to a baseline of no daytime seizures, and then --- we'll try again.

What have we learned from this latest incident? Well--- I know that ROC is aptly named. I truly felt cared for and it was ---well--- comforting and reassuring. I know that Michael's epileptologist is fully supportive of our cannibinoid journey.She immediately placed the blame on benzo withdrawal and discussed WITH me, not talked TO me, about the next step. Some may feel we should have continued with the wean but I'm not willing to take the risk right now. Timing is everything, right? Now is not the time. But when we DO tackle this wean again, we'll be doing so using a pediatric suspension so we can go REALLY low and slow.

It's the day after. The sun is shining brightly. We are keeping  him "close" today as the neurologist advised. We are wounded , not beaten. We hit one of those "potholes in the road of life" my Dad used to talk about. Michael had two questions for me when he came downstairs a few moments ago: "When can we start the liquid ONFI? " Followed by, "IF not ONFI can we start weaning another drug?" And just now, "So yesterday probably eliminated a car in my future?"


Wednesday, July 9, 2014

It's Official: I'm Addicted

It's practically the first thing I think about after waking, second only to checking that Michael is NOT seizing and IS breathing. I definitely think about it often throughout the day and sometimes a family member points out smugly that they knew what I was just doing upstairs.
My name is MaryLou and I am a tapaholic. That's right- a tapaholic.
I have never in my adult life--- oh hell--- my entire life, been a fan of physical exertion otherwise known I suppose as exercise. I failed miserably at playing softball in my youth. My mother, an  excellent softball player, so much so that all her contemporaries say she could have played professionally, told me I threw like a girl. Yes. She really did say that. As an adult I tried it again when Barry and I moved to Michigan. I wasn't recruited for a second season. There have been multiple gym memberships, home exercise programs from Jane Fonda to Janet Jones to wii Zumba, and multiple contraption purchases including a stationary bike. Nothing lasted. I either was ill equipped for the sport, bored stiff with the routines or sick of working out next to the toned and buff.
But tap--- ahhhhh---- that's a different story. One hour of mixed music that transports me back in time to high school dates, college concerts, broadway shows, my wedding day, my kids childhoods and keeps me current with today's music as well. One hour of constantly changed up dance steps. Shuffle- heel-heel-pull-heel-toe-heel. That's the one I have been obsessively thinking about and practicing the past few days. What has happened to me? FitTAP: "the benefits of fitness, the joy of dance". Indeed!

Sunday, July 6, 2014

Changing Paces

 So Michael had a seizure yesterday at 5:37 AM---- in his sleep. Nothing extraordinarily different about it though it did come less than two weeks after the last. Once he was settled and sleeping I just went back to bed resisting the urge to write about yet another stupid seizure in some kind of violated and madder than hell state. Does all my ranting really do any good I asked myself?  Am I preaching to anyone other than the choir of desperate, despairing and depleted parents who just want their kids to stop seizing and have a shot at living some semblance of a normal or just a better life? 

I don't know the answers. I know I am beginning to think I need to do something different or do what I do differently. I know in our personal situation we have a long ways to go before we can determine if cannibidiol products and fewer pharmaceuticals will change Michael' s life. I remain hopeful though.

I'm thinking it might be a nice change of pace to practice "breathe in...............breathe out" as Michael has often instructed me. Or maybe, heed my father's long ago words, "MaryLou don't wear your heart on your sleeve". Maybe. I'm thinking.