Skip to main content

Choose Your Pill





We are one pill popping happy culture. There is a pill for this, and a pill for that. Swallow something down and sit back and wait for all your ills to go away. The search for the utopian answer is never ending. As an active participant in the pill popping mania, I can attest to the helpless feeling of dependency on something outside yourself for health and wellness. I'm fairly healthy, no big things yet, but I suffer and experience all the mind games as surrogate for my little lion. He is the innocent and unwitting party who has no say, but to who it all happens too. We make the decisions but he is the one who has to suffer the pills, liquids, sprinkles, shots, nose vaporizers and all the side-effects that go with them, and he is the one who has to teeter on that illusive balance beam which at any moments can pitch him over the line from healthiness into the dark land of seizures, hospitalization, and brain damage. It is a given that we, as his parents, will choose to keep him on the other end of the beam at all costs. But not all costs are the same, and how much is too much?


 Last Tuesday Leo got dumped in seizure land, though thanks to the meds in the above picture, his sojourn there wasn't long. For the few days leading up to the event, Leo was cranky, and just plain pissed off. I don't know what was going on, and it was pretty exhausting to be screamed at all day. He was frustrated and uneasy, which made the rest of us feel the same. Though I didn't even want to think about it, my subconscious wasn't surprised when the seizure happened. It knew what was coming down the pipes, and the anticipation was putting everyone on edge. It was a relief when it finally came, and it was, in some imperfect way, perfect timing. The next day we were scheduled to see his Neurologist to check on his meds etc, so immediately we were switched into thinking high gear about his whole medication plan. In his case, more does not equal better. Actually, I'm a firm believer that more is always worse, and moderation and balance is the key that unlocks all treasure boxes... Anyway, right now Leo gets two anti-seizure meds, and three other "supplementary" meds to keep at bay side effects from them.


We spent much of the appointment, other then Leo show-and-tell, talking about medicinal cannabis with the doc. We could tell he was excited about the prospect of researching the properties in cannabis that can stop seizures in their tracks. He is hoping to go up to Canada soon to attend some research meetings etc about it. Why Canada? Because they, apparently, get stuff done sooner than us Americans do. Race to the cannabis anybody? Anywho, it will take years, of course, before enough studies are done before Doctors will be able to understand and prescribe dosage and formulas for us pot hungry plebes, and more importantly, for our suffering, seizing, children. Until then, the standard variety of meds is the palette from which we can shape our life and little lion man's. Many of the "brain drugs" have particularly nasty side effects which include and are not limited to outrageous and or dangerous mood swings, hair loss or growth, teeth and gum problems, liver and kidney problems etc, etc, etc...
Is it terrible twos, or is it the "Keppra rage," is the thought boiling through my head as Leo throws himself on the floor in a classic heel kicking and fist mashing tantrum.


It is such a slippery slope, and the more I worry about it, the slicker it gets.

It is our reality, that we are making choices everyday and trying to make them be the "wiser" ones, even if they don't feel like the "best" ones. 
We are going to be weaning the Lion boy off of the Keppra (he has been on it since 4 months of age), slowly, but surely, because I have the feeling and the doc backs me up in it, that it is the Depakote that is controlling his seizures at this point. Since the introduction of this med, Leo's seizures have been very infrequent  and also, even more importantly, mild and stoppable by his rescue med. This is very important and desirable, because if you remember, Leo's seizures have an unfortunate tendency to spiral into "statues epilepticus" in a matter of minutes which constitutes as a "code" emergency for medical people or time to freak-the-hell-out mode for the rest of us. So any med that can keep the freak away is very, very, very good. We want.  In fact, we got to see this med in action when Leo was in the PICU last fall on the EEG for two days. Watching the brain spikes on the screen get less sharp and jagged as the sprinkles worked their happy magic in Leo's brain was fascinating to see. EEG reading tip for the stressed out parent: sharp and spiky = Bad. Little soft wiggles = Good. 


But could cannabis be the better answer? The miracle drug that will keep Lion boy seizure free with no side-effects? Who knows? Like everything in life, we need to deal with the moment now, with the reality of not having a "perfect" solution, and making the best of it. Leo needs his pills, because the alternative for him and for us is not acceptable.


And I believe, that learning to value and accept the "imperfection" is where the true peace lies. 
Learning to accept the reality of pills, side-effects, desires, fears, seizures, and dealing with them, the best you can, and then, letting it all go. Dare I say I've found my seizure monster antidote? And it doesn't come out of a bottle either. Even though on Tuesday my hands shook so badly that I had trouble drawing up his rescue med, but this time, it didn't scare me. Yeah I reacted, but I didn't loose it mentality is what I mean to say. It is what it was, a reaction, an effect, but it didn't control me and actually it was the opposite; it set me free.  It set me free to feel, and to be present and do what needed to be done without feeling incapacitated with fear. 


Comments

  1. prayers continue and always will....in fact, I begin my intercessions each day with "Thank you for the miracle of Leo.
    Claire

    ReplyDelete
  2. Prayers for finding a perfectly imperfect med for the Lion Man. I'm so impressed by your ability to manage such an elusive animal (by which I mean seizures-- not your little guy!). And, may I just say, that I think Leo has gotten ten times cuter since I last read your blog! That photo on the bench!! Too much cuteness!

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…