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?
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.