How We Do It, Part LV

I drove up Venice Boulevard today, back from a doctor's appointment on the west side, no traffic, blue skies, hot dry sun, the silk floss trees dropping their pink petals. This is what I thought. Sophie had a huge seizure this morning, a big one, related, I'm certain, to the fact that we've cut her drug in half. I rubbed some THC on her gums during the seizure, and she recovered fairly quickly. I don't know what's what, but what I do know is that I've lost all trust, or maybe not all but most trust. You must have figured that out all ready.  Trust in what if not what's what? I don't remember exactly when I became unmoored -- was it when that doctor from New York City told me that I'd had a good idea when I suggested that the three drugs my baby was on were perhaps interacting with one another? Was it that moment when he hmmmmed on the phone and I realized the gig was up? Is it because I'm a woman, formerly a girl who was taught to please, to defer to authority, to pipe down, shut your mouth, too opinionated, your head in the clouds?Just the other day, I was told, Who told you that you're special? What makes you think that? with all the implication that I'm not, which I know, at last, to the questioner. But this -- this trust -- lost -- the sense of trust lost, the yearning to hand it all over (not let go, let god), the impossible decision-making, the plunges, the leaps. The silk floss tree blossoms are like windmills on Venice Blvd, spinning and falling. The trunks are spiked, so sharp that we shaved them from the tree in the backyard when the children were young.  My windshield -- wind shield -- covered with flowers that fall, whole. She seemed confused today, her brow furrowed, her eyes too often swiveled to the right, a jitter, a blip. I imagine taking Sophie under my arm and running, running to China, away. She's still that baby, under my arm, so many trips to China. Don't get me wrong. I'm not going anywhere but there in my head. These seizures, those, this loss, that baby, trust gone -- they are compressed in time, over and over, just mused over on Venice Boulevard while I drive.

How We All Do It

M using her vaporizer system for MMJ while an inpatient

Back in April, my friend Heather connected me to her friend S, a Canadian mother of a sixteen year old with severe disabilities. Here's the email that S sent me:

Heather gave me your contact information because we are really struggling with our daughter's seizures right now. She is 16 and previously had been seizure free for 2 years!! Now we have been in status Epilepticus twice in a week that requires massive drugs to stop. It's a matter of time before she is intubated and takes her at least 4 days to recover from. I have heard so much about CBD oil and need to try this. Not sure what resistance I will encounter with her neurologist but want to arm myself with information. I was not even sure I could get it in Canada. I am very excited about this option and would appreciate ANY information you could offer.Thank youS

I responded immediately, but because I am Not A Doctor  and have only a tiny, little mother mind,™ God forbid I should give any medical advice. I referred her, instead, to Realm of Caring, to the Facebook groups and to my Canadian friends who use CBD with their families. I also suggested that she watch the CNN series Weed. 

A few days later, S responded:

Thank you! M. is on Vimpat, lacosemide, clobazem(onfi), and now adding phenobarbital that she had an allergic reaction to 15 years ago. They hope she's outgrown it???!!! So many drugs, each one has its own side effects. Our neurologist today told me he will not support CBD oil because he has no proof it works and is not legal here!!!!! So frustrating. I still will pursue this because I have heard such overwhelming real life accounts of its benefit. I am not sure how to join the support groups. When I  click the links I get a page saying I do not have permission to enter the site. I am super excited to be able to hear Canadian stories. Gives me great hope. How do I join those groups?Thank you. S

I'm sure you heard my giant sigh when I read what her neurologist said. It was probably in direct proportion to how the neurology world perceives my tiny, little mother mind™ and the government views the evils of marijuana or Big Pharma anticipates profit, but I got back to S with what I knew about medical marijuana in Canada (that it's NOT illegal) and then referred her again to the Canadian mothers I know who are using it successfully. I'm not sure what happened next, but about a month later, I got this message from S:

Just wanted to give you an update! I took M to a Cannibus clinic against the neurologist and paediatrician!! They were not supportive - the opposite of that really. I begged my family doctor for the referral. She wanted to put M in the Hospice and pull all treatment. I begged for this saying then at least I know I have done everything. Well we started 17 days ago. We have not had one single seizure in 17 days!!!!!!!! So thank you from the bottom of my heart. Your help has given us another chance at life with M!!! She has had some significant brain injury due to the severity and frequency of the seizures. The only way we can move forward and heal is to get a rest from the seizures. We have that now. Hope it is onward and upward from now on!!! Thank you again for your help and advice.

On June 11th, S wrote this:

Day 35!!!!

Unfortunately, this past Friday, S informed me that M had to be admitted to the hospital because her feeding tube site got infected, and S had to then worry about giving the CBD oil in-hospital. Here's what she wrote me:

We are trying to get her medical marijuana approved to use here in Hospital!!!!! Yesterday a resident asked the team and they said yes. I was so excited until we went to use it. That resident never wrote orders for it!!!! So that's my mission today. She has gone 3 days without it. I will be devastated if she had a seizure because she was not allowed to use it!!!! I hope the oils get established and provided here!!! We are here because M's feeding tube site got infected. We brought her in Sunday and they did not believe she was sick! They were so rude and condescending. By Tuesday morning I had to rush her here in septic shock. They believed me that time. So looks like we are here for a while. Hope not too long!!! This place drives me crazy as I am sure you can relate!!!!

I can definitely relate, although my experiences in the hospital with Sophie were, thankfully, years and years ago. Knock wood three times right this second. S and M are far bigger rock stars than Sophie and I!

In any case, S updated me further:

I got the approval!!!! Can't believe they are going to let me do it in the Hospital!!! They say it is a first!! It seemed like a big deal. They had to take it into their possession and lock it up in their narcotic cupboard. Makes me laugh!!! I have enough Midazolem in my diaper bag to drop a horse but the less that 2% THC product that wouldn't affect a fly is confiscated!!!! Oh well, at least I got approval!!!!! I would love to see the look on the neurologists face if he hears about this!!!!!!

I know some of you think I dramatize stuff, that I might spend too much time writing about the negative experiences of our children with special healthcare needs and not enough time with the positive. I am perfectly aware that there are plenty of wonderful doctors and healthcare facilities all over the world, and I'm grateful for all of them. The reason why I highlight a lot of this stuff, though, is because it can be life or death -- literally and figuratively. It's a literal life and death situation for many of our children. Those of us who parent or care for children with severe disabilities and epilepsy in particular die a thousand deaths figuratively when our children seize. We are traumatized by the condition itself and then doubly or triply so when we face bad care or doctors who dismiss our concerns or who fight our decisions, openly, even as they have no hand to deal.

But back to our unfolding story. You're keeping up, right?

On Friday, S sent me this message:

Yes!! M got her medical marijuana tonight in the Hospital. Children's Hospital!! She is sound asleep and peaceful. It is such an amazing and wonderful medicine for her!! Natural healing power!!!

There's both the literal and the figurative saving of lives. 

I was so excited to hear this that I asked S whether I could post a story on the blog about them. This is what S said,

Absolutely!!!! If M's story could help one person or inspire someone that would be wonderful. I think this is an important time for this era of medical marijuana acceptance. It is definitely something that I believe in and has improved the quality of M's life beyond anything else that has been medically offered!!!

So, there you go. Reader, please share M's story.

We're all connected, and this is how we do it.

Snappy Answers to Stupid Questions* and Some Observations**

Questions


1.
(The well-meaning stranger)

What's wrong with your daughter?

She has a rare form of epilepsy.

Can't they give her something for that?

What a great idea! I'm going to call the doctor first thing!




2.
(The man popping peanuts at a cocktail party)

Does your daughter feel love?

No, but she does feel hate, and you'd better move out of the way because she's a really good shot.



3.
(The social worker doing a conservator interview)

Does Mom let Sophie make her own decisions regarding her sexuality and marriage?

No!  I've already arranged for her to be married to my oldest gay friend so that she can get some decent health insurance benefits!



4.
(The Neurologist standing in hallway of hospital)

Have you thought about the drug choices I gave you as the next treatment for Sophie?

Yes, and I think I'm going for the one that can cause aplastic anemia instead of the one that causes blindness, and I'm not sure whether the other one is right for a six month old. Doesn't it have pretty bad long-term cognitive side effects?

Well, what's a few points drop in IQ really matter?

Probably not much in her case since she's already told me how to construct a bomb and blow up your office!


Observations

1.

We live in a country that likes to drop bombs, both literal and figurative, and then clean things up and rebuild afterward. This observation pertains to wars (Iraq), vaccination "science," cancer treatment, pharmaceutical companies, the medical-industrial complex, the tobacco industry, fast food companies, anti-obesity efforts, etc.

2.

When you engage with A Neurologist, you have to do a certain amount of suspending your belief that these are people with advanced degrees and therefore able to make intelligent inferences that don't involve their egos or ties with certain pharmaceutical companies.


3.
(in response to SB277 passing through committee)

I'm interested to know if the California government plans on chasing down those families who choose to delay or decline vaccinations for their children and themselves. Will they carry syringes as they run after us? Will all public places be verboten for those of us who refuse to get a mandatory flu shot? Will herd immunity be strengthened? I saw a pig fly the other day.

4.

Obduracy and control go hand in hand.


5.

On Friday I will be attending my 17th Individualized Education Plan for Sophie, and other than expressing my gratitude to her teacher and aide, I don't give a shit what happens in it. I plan on bringing donuts and, perhaps, a flask of bourbon. I will, as usual, wear a leotard and do my customary tightrope walk routine.***

















*All questions are factual. Answers were inside my tiny little mother mind.™

**All observations are from my tiny little mother mind™ and should only be construed as opinion, except for the first part of Number 5 about gratitude and not giving a shit. Those are facts.

*** More observations on what happens at this meeting are forthcoming.

Car Office and Futility

I dropped Oliver off at two very cool seminars for homeschooled kids the other day and decided to work in my car with my new laptop. I rolled the windows down, parked on a side street and began to work on the two presentations I'm doing this weekend at the Epilepsy Summit in Manhattan Beach. I also worked a bit on the ghostwriting project. I listened to birds in the almost piercing silence of the neighborhood (a great relief from the almost constant Mcnoise from McMansion construction in my neighborhood that includes really loud mariachi band music), put my face up to the sun and felt glad to be alive and grateful to be working.

While honored to have been asked to participate twice at this weekend's summit, I have to be honest and tell you that I sort of, kind of, hate these things now. I opened the program and saw, immediately, that the biggest sponsors are the big pharmaceutical companies. There will be some wonderful family seminars and programs and, undoubtedly, lots of information, but contemplating the big picture just makes me feel trapped and tired and alien. Just today I spoke with a friend in New York City who wants to try cannabis for her young daughter who suffers from a terrible brain disorder. Charlotte's Web Hemp Oil is available to be shipped in most of the states because of its classification as hemp, but there's still a lot of gray area, and we were going back and forth on whether it's better for me to pick it up for her here and then ship it to her in New York or whether she should drive over into New Jersey and pick it up there. Bullshit, right? On top of that is the question of her nursing staff at home who might not be able to give her daughter the oil because they can only administer meds prescribed by a doctor, and there aren't any doctors right now who can or even would do so. Ironically, while the Powers That Be futz around with their need for more research, I'm reading (for a project I'm doing) about the reams of studies and evidence of efficacy done, in some cases, scores if not hundreds of years ago. 

Sigh. I guess my ambivalence has something to do with the fact that nothing traditional has ever really helped Sophie or my family, and while I don't want to throw the baby out with the bathwater, I'm hard put to participate in anything at this point under the auspices of big pharmaceutical companies. I admit as well to backing out of doing the hard lobbying work that some of my comrades and colleagues are doing right this very moment to pass a bill in Congress that would make cannabis oil more readily available.

We're talking years and years, people, for any of this to truly happen.




Sometimes I just want to put Sophie under my arm or throw her over my shoulder and run far away. At the very least, I'd rather sit in my car typing while listening to the birds than shout into the vacuum that is the medical world.

Anticipation: Magical Realism

 Just one glance at her face was enough for Maria to know that no amount of pleading would move that maniac in coveralls who was called Herculina because of her uncommon strength. She was in charge of difficult cases, and two inmates had been strangled to death by her polar bear arm skilled in the art of killing by mistake.

Gabriel Garcia Marquez 

from "I Only Came to Use the Phone"

in Strange Pilgrims

Skilled in the art of killing by mistake. How delicious is that, particularly those of you -- us -- who loathe the world of medicine for reasonable and unreasonable reasons.

.

I'm not a doctor, but.

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months. 

Melissa Healey, The Los Angeles Times

 September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures. 

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy. 

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable? 

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

Urban Observations and Musings on Mindfulness and Disappearance

I left the CVS last night at dusk and on the way out listened to a woman, on her way in, lamenting the death of Robin Williams. It took a moment for me to realize that she was not all in her right mind, as they say, because she was asking questions of no one in particular. Robin Williams is dead? Was it a suicide or did his wife kill him? For not doing the diapers? I made tentative eye contact with her, and she asked Do you want to change dirty diapers?

As I walked home, I realized that in my purse I carried nearly $1,000 of a powerful narcotic but that I was hardly the richer for it. I also carried a $12 razor and $20 razor blades for my older son. Narcotics and razor blades nestled in a brown leather purse.



Today I took Sophie to her every three month or so neurology appointment. While I really like and admire The Neurologist, have I told you how much I hate my life when I have to go to hospitals and appointments with Sophie? You'd think at this point that I'd be sort of numb to it all, but I'm not. At the very least, my mindfulness practice enables me to identify that the physical nausea, elevated heartbeat, stifled whimpers that would so much like to eke out of my mouth, and pinprick of tears behind my eyeballs are all just -- there. I can just acknowledge them as visitors, in a way, not suppress them or hate them or indulge them. It's very precise work, though, to do that -- one of those tightrope walks that I've told ya'll about. I have no idea why I have this problem, if you can call it that. At worst, I fantasize about various ways I could disappear -- not so much suicidal thoughts or death wishes but just an end to it all.


Those legs in that photo belong to three women who were in the waiting room in the neurology department this morning. Directly behind them is a sign on the wall in large letters, spelling out the word:

C O N Q U E S T

Whenever we go to see The Neurologist, I stare at that word and the plaques below it, memorializing the generosity of various people who, I guess, have helped to conquer neurological disease. I rarely feel gratitude when I look on this but rather am reminded, again, of how much I hate the medical world and, particularly, war imagery. Don't get me wrong, I'm grateful that I'm not waiting to see a doctor in Africa -- let's say -- where the walls and floors are speckled and splattered with Ebola-infected blood. The world is vast and cruel, my own issues and problems dwarfed. I just hate the idea of conquest and warriors and all that lingo. I make myself laugh by thinking it should read:

D A M N A T I O N

or maybe:

H O L Y  S H I T

I recognized a kindred spirit in one of those three ladies attached to the legs in the photo. She was an old woman, flanked by another old woman who was her sister and a middle-aged woman who was her daughter. I know these things because the three of them spoke loudly throughout our wait to see The Neurologist. The kindred spirit woman was the one who had some sort of problem, and while her daughter and sister were relentlessly cheerful in the manner of those who aren't sick, she said at some point or another that rather than have the test, which I think was a spinal puncture, she wanted to just go ahead and die. The middle-aged daughter remarked that her mother was so negative, and the sister, who was markedly thinner and sported a bouffant hairdo and make-up, opened her mouth in a sort of gasp and declared, Well, then, who is going to take care of me when I am older? I sort of wanted to get up and go over to the sick one and put my hand on her shoulder, tell the other two to knock off the positive shit and then say, Let's get the hell out of here, but just about then, the male nurse called out Sophie's name so I got up and reluctantly walked away. I did hear my kindred spirit tell her sister testily that she did have two daughters to help her out, but the sister said, It's not the same thing, and you need to cooperate and have a better attitude and then I was out of range, on my way in to juggling Sophie while the nurse tried to get her blood pressure and to walking her up and down the bland hallways waiting for The Neurologist to appear. 

I confess that the fantasizing happened in the parking lot, after the appointment, when I forgot where my car was parked, an occurrence that happens so regularly as to belie my otherwise formidable memory. Again, mindfulness practice helps, but oh, to disappear.