What do you do about Sophie's medicine at school and do you tell her school what she's taking?
You'll know later why I posted this daffy photo of myself that I took on hour five or so the other day that I spent in the Los Angeles airport, waiting for the Chicago airport to open. I loved those glasses, but they cost $65 which is ridiculous, even if they were vintage and everything's coming up -- oops, I don't want to give it away.
Here's what I do about Sophie's medicine at school. I don't give it to her at school but wait for her to come home to give her second dose. The first dose comes at 7:00 or 8:00 in the morning, about an hour or so before breakfast and before her other meds. The second dose comes about 3:00 or 4:00 in the afternoon, and the third comes at 10:00 at night when she's already asleep. That last dose is the most tricky, but so far we've been able to manage getting it in her mouth followed by a sip or two from her sippee cup and some gentle stroking of her cheeks to provoke the swallow reflex. She rarely wakes up.
Here's what I tell her school about the cannabis: nothing. I have told her teacher and aide, quite privately, that we're using it, but I haven't told the nurse or the principal or the vice-principal or the special education director or Oz Downtown because it's none of their business. You might raise your eyebrows at this, especially if you live in California and know about earthquake plans and emergency medicine supplies. I realized today that several months of the school year have gone by, and I haven't renewed Sophie's earthquake emergency medications in the school nursing office. To tell you the truth, I might have let the entire school year go by last year and not taken care of that either. That is wrong, I admit, and irresponsible. If there were an earthquake, and we were not able to get Sophie, she would be in deep shit without the regular administration of the two antiepileptic drugs that she takes, even though neither controls her seizures. Why is this? Because stopping these AEDS abruptly is very, very dangerous. Out here in earthquake territory, we are supposed to have water reserves for three days at a minimum and up to ten days. "They" recommend a week's supply of medication as well.
What does this have to do with cannabis? you ask. Here's the thing. I'm not worried about leaving cannabis with Sophie's school because going without the cannabis for a few days is unlikely to kill her. Yes, she might start having bazillions of seizures again like the old days, which is never very good, but she isn't addicted to the cannabis, and I can stop and start it with relative ease. Each dose is not harming her in unseen and obvious ways. That just struck me today, like an earthquake. I thought, too, about the questions I get from readers about how nervous they are to try cannabis, how they struggle with their disapproving doctors, how they wait for their doctors to lead their every single move. I might get into trouble with this (not real trouble but more the kind of disapproval that some people have for those of us considered difficult, crazy or uncompliant), but I do what I think is best, and I don't give a flying foofoo what the doctor thinks (beyond the obvious). Twenty years has given me that confidence, and while I wouldn't ever tell someone to "disobey" their doctor, I seriously question the whole doctor says thing especially when it comes to cannabis.
Now, if I could only get up the nerve to do another wean of one of those AEDs, everything truly would be coming up daisies. In the meantime, I'm going to get those emergency supplies to the nurse at school. May there be no earthquakes when Sophie's at school, though. Please.
As a SpEd advocate, just yesterday I was dealing with a case where a school nurse refuses to use Diastat, instead calling rescue three times so far, costing the family more than they can afford, and going against doctor's orders. There is no law or regulation in that state stopping the nurse. I said to the parent, "Just wait until he has to give her pot." Although we laughed, I was somewhat serious and thinking of you.
ReplyDeletePostscript: The nurse will be giving the Diastat as needed.
Single Dad -- The Diastat issue was a long fight here in California but finally won with a bill passed a couple of years ago allowing any trained person and not just nurses to administer it.
DeleteThis says so much about so many issues.
ReplyDeleteAt this point, no doctor in the world knows as much about Sophie's health and treatment needs as you do.
And I sure as hell hope that there are no earthquakes when Sophie's at school or when she's at home, either.
Damn.
darling elizabeth, it occurs to me that you're writing another book with these posts, a slim volume that many families asking questions about cannabis will want to read. you may not see yourself dong it, but you are doing a great service by sharing your experience here. i am grateful for your courage and honesty and for the fact that you don't give a flying foofoo. this is a very necessary trait in trailblazers.
ReplyDeleteHate the word uncomplliant. Used in health care to describe people who do not do exactly as the doctor orders. I'm one of those I suppose regarding my own health care. I'm really scared about the med weans as well but first we need to see success with the CBD or combo of CBD/THCA /THC if CBD a only doesn't work optimally. So much to think about and hope for. Thanks for the reminder re emergency meds. Resolve: no earthquakes during school!
ReplyDeletewish I could get my mom to take cannabis for her Parkinson's, but she is so brainwashed by "Just Say No" tribe that she cannot, will not, do it.
ReplyDeleteI have the same issues with my insulin -- I try to keep extra on hand in case of emergencies like fire or earthquake. Problem is, it must be kept cool. How likely am I going to be near my frig when the big one hits? Hmmm.
Let's hope Sophie and I don't ever have to find out.
The stigma around cannabis still kinda blows my mind. I wouldn't have the earthquake supply taken care of, either.
ReplyDeleteHi Dear One,
ReplyDeleteHaving not read, or commented for far too long, I just want to say "Bravo."
Your articulate sharing of your experiences inspires me to move my own pen/keyboard. More, it opens a window, allows more light to shine in on our medeval society.
cannabis is underestimated by medical "cartels". and indeed it has gotten an erroneous reputation since the "war on drugs". but again and again it is proven to be an excellent medicine, period. the 100 monkeys theory: eventually it is accepted as routine. the proof is in the pudding as they say.
ReplyDelete