Seizures, Wishes and Love
I'd swear we haven't seen the sun in a month in Austin. My brain reminds me we've had a couple of stellar days mixed in, but I can't quite recall how I felt on them. My boy has been using Texas-grown cannabidiol oil for two weeks now and I am getting worried that not only is it not helping, it could actually be hurting. It's hard to type that when you put so much faith into something. I knew going into this that M would likely be one of the many patients that needed more of the cannabis plant, and I have been gearing up to work with my Texas MAMMA chapter to gain the right to do just that in the 2019 legislative session. The thc that Texas legislators seem so afraid of is the reason Alexis Bortell and many others are now labeled 'medical refugees.' They've moved out of their homes and away from their families to states with legal access to medical marijuana because they needed access to the whole cannabis plant to save their lives...and it has.
I have logged M's seizure activity for the past two+ years. It's a strange world we parents of epileptic children live in. Seizures happen and (hopefully) are witnessed by my husband or I. We yell out to the other 'SEIZURE' (if we are both at home), and whoever wasn't there comes running. The majority of the time our amazing younger son, B, is there and he comes running too; Ready with a phone to time the seizure. Ready and on call to grab a towel to wipe up the aspiration or blood from his brother's nose. Ready and on call to help in any way an 11-year-old should not have to. We all stroke M and keep his body as safe as we can, while telling him how much we love him and that we are all here with him...for him. And then it ends and we do the best we can to get our uncomfortable and disoriented M to the safety of his bed where he will scratch his head obsessively, cross his feet over his knees repeatedly and inexplicably, and then finally settle into the long, post-seizure sleep his body needs to recover.
On average, we repeat this scene about once a week. Unfortunately since beginning this cbd oil two weeks ago, we have logged five of these evil seizures with notes about two others that possibly occurred when we were not in the room with him, but found him fast asleep in the middle of the day for hours.
All that said, I am not ready to give up on this medicine yet. The increased seizure activity is interesting to me in that it happens within the first two days of increasing his dosage. The following four to five days are excellent with noted positive changes in his demeanor, cognitive ability and participation at school. But I cannot accept even those good things at the cost of more seizures. Seizures can be deadly. I will continue to work to titrate the medication upward and I hope, hope, hope that we find a sweet spot we can stop at that will put the seizures at bay AND continue to give him positive increases in his mood and cognition. I accept that the severity of my son's condition will likely mean he needs a lot more of this medicine than the average human. The thing about seizure medication is that the 'right dosage' is different for everyone. There is no exact science for pharmaceutical anti-convulsants or cannabis medications. It is trial and error, unfortunately, and you risk your life or the life of your loved one as you try to discover it.
Which brings me to wishes and love. As in Make-A-Wish Foundation and Do It for the Love (Michael & Sara Franti's amazing, musical wish granting organization). About a month ago when I was getting M's blood drawn at his pediatrician's office the caring staff, as they always do, asked if I had any questions for the social worker. (We are blessed to be a part of the Dell Children's Comprehensive Care Clinic here in Austin. I highly recommend looking into this if you have a medically complex child--it has been life changing for M and I) So I sat with the social worker to ask if she could look into where we stand on the years-long waiting lists for medical programs here in Texas because I was curious about possible nursing and respite care benefits. These lists are generally 8-10 years long, and I am very fortunate to be blessed to not have to rely on them as so many patients do. As suspected, our number will still not come up for quite some time, so the social worker brought up the Make-A-Wish Foundation. I was surprised at the way this struck me. I immediately started bawling right then and there. Despite knowing the gravity of M's medical situation for some time now, I just never thought of us as people who would qualify for a wish. Wishes seemed to be for kids with cancer...not for my child. But these God-awful seizures have reminded me that like a child with cancer, M is on borrowed time.
My friend, Michelle, a medical refugee who left her home in San Antonio a year ago to move her son to Colorado, mentioned Make-A-Wish on Facebook today and it reminded me that it is okay for me to send in a request. No matter how blessed my family is in other ways, it is okay to ask for a special request to be granted that we couldn't otherwise fulfill to a beyond deserving young man. And so with a lump in my chest, this morning I filled out the application and look forward to hearing back from them. One of M's favorite things is the Dallas Cowboys and I'm hopeful a wish can be granted involving one of the players. I will keep you posted!
And since I was on a roll, I also submitted an application to the Do It for the Love organization. If you know me in person, you know I am a big fan of Michael Franti and Spearhead. I have had the good fortune of seeing the band up close and personal on several occasions, and B even got to go on stage and play drums with Manas, Franti's amazing drummer, at a show here in Austin last summer that blew our socks off! You guys, if you want to feel high in life, I can't encourage you strongly enough to go to a Michael Franti show. The love and joy you will experience will fuel you, I promise. When my kids and I are having a rough day we crank up some Franti and dance and sing until we feel better. This music is just that powerful!
