Progress

One foot in front of another.  

One. Small. Step. At. A. Time.

Maybe, just maybe, we will get there someday.

A Ray of Light in the Darkness

I have touched briefly on the years of Hell we went through when the Blue Jay was little - actually from the time she was 13 months until she was 10 years old. Although seizures may not have touched our lives, directly, for the past seven years, those memories are not just burnt into my brain but a part of the very fabric of our family.

Such is the laser-story of the background to my reaction to what I discovered on FaceBook yesterday. [Perhaps FaceBook does serve some useful purpose, after all. Who knew?]

So what did I discover that has so completely garnered my attention? See for yourself.




You know, a very large part of me has to wonder why ... why is the use of such a discovery a big deal at all? Why are families forced to pack up and move across the country to get their child the treatment they need?

Perhaps it is the fact that I live in the Great White UP, where we have a system for the approval of the use of medical marijuana. I gather the situation is a little more cloudy in the United States.

Whatever the reason, I can tell you that without a moment's hesitation I would have tried cannabis for the Blue Jay in our darkest days. Yes, for the part of that time, she was only a toddler, but those seizures were robbing her of her life.

Although the situations are not identical, I strongly identified with the two families profiled in the video above. When we were living through our own personal nightmare, the ketogenic diet was the new kid on the block, looked down upon by medical professionals, and not just completely misunderstood by the general public but pretty much totally unheard of (essentially a step down from being completely misunderstood).

The food was much too "unpalatable", how can a child possibly survive without going to birthday parties, it's a regiment that is impossible for a family to maintain, no child will put up with it and, of course, it was much, much too unhealthy - we heard it all and I have a response for each and every one of them, although I won't bore you with that at the moment. Let's just say that families do what needs to be done and can be incredibly innovative and creative when need be. And done with a little care and attention, there is no need for the ketogenic diet to be so unhealthy.

The diet was our "miracle drug" (although, of course, not a drug) at the time. And I have never regretted it for one moment. Not when I fought with the doctors for months to get them to agree to merely try try it; not when we fought daily with the Blue Jay, herself, when we initially tried to get her to accept it and worked for months with a child psychologist to convince her to actually eat the food; not when, after going almost two years seizure-free on the diet, we lost control and essentially had to start all over again; and not the second time we lost control thanks to a doctor's neglect and the Blue Jay ended up in the hospital, not just actively seizing again but with dangerously low potassium levels.

Hard? Hell, yes.

Sorry, we gave six years of our and the Blue Jay's life to it? Hell, no.

So now you have a much more complete background to my response to the above video. Perhaps that's why I can't see the issue with using medical marijuana in this way. Instead of horror or concern, I was elated to learn of a new epilepsy treatment and fascinated to learn how, instead of growing plants to maximize the THC (the chemical that makes you "high") content, they actually manipulate to increase the CBD content, which is the compound that is effective in stopping the seizures.

The original post I saw on FaceBook, accompanying the above video, read like this:

Washington Post covers medical cannabis for pediatric epilepsy. What are your thoughts? How far would you go to save your child? We were happy, and a little nervous to tell our story so publicly. But I feel it is absolutely necessary. Families need to know this is an option, and they can work with their medical team to make the best decision for their child. ♥ Heather

I must confess I had some trouble grasping exactly why this family was at all nervous to tell their story, why they weren't, instead, just singing it from the rooftops.

But, hey, I am a lawyer by training so not totally clueless - yeah, yeah, I get that whole "illegal in some states" thing compounded with the likely cries of "Oh my God, what kind of parent would give children as young as toddlers marijuana on a daily basis? For heaven sake, call Child Protective Services immediately!". There's some in every crowd, you know ... but that, too, is a story best saved for another day.


So. Shortly after watching (and raving) about the above video, I found this one in my news feed.



Now I might disagree with the good researcher when he states that they know how most of the current anti-epileptic drugs work or don't work (and, by the by, he actually contradicts himself later in the interview when he notes most of the most effective anti-epileptic drugs were discovered by accident and they don't have clearly defined mechanisms of action for many of today's drugs), but to me, that is much less relevant than his comments on the "ethical issue" of giving marijuana to toddlers

After the interviewer notes that at a "headline level", the issue was still very much giving medical marijuana for toddlers, he asks the good doctor if he had any "ethical" issues with this. Apparently he does, "very much so", in fact, based on a long-term New Zealand study of people who had used marijuana, which found that the only group that showed permanent cognitive damage was moderate to heavy users of marijuana during adolescence.

Like it or not, not exactly a surprising result. But as noted in the interview, this study was looking at the effects of THC. And as noted in the first video, these plants are being bred to specifically lower the level of THC and increase the level of CBD.

I can understand accept that doctors require their double-blind studies and believe they "need to know" how/why a substance works before recommending it to their patients. But it's one thing to clinically speak of the 35% of patients with "difficult to control seizures" and quite another to actually be one of that 35%.

Because, trust me, until you have actually lived that, You. Have. No. Clue.

I wonder how many people will only hear and remember those headline comments. I wonder how many people out there will actually listen to the entire interview, the defining moment of truth of which comes only at the end

When asked if he, personally, would use marijuana for his child, the answer was more than telling.

If that were my child and I had a child with difficult to control seizures and knowing the risk of uncontrolled seizures, if I had something that would control those seizures without any obvious major adverse effects on the child, that would be, as my personal decision, I would do it. Not as a clinical recommendation, as a parent myself.

. . . 

Now if that was a child of mine and somebody offered me a less than perfect but effective treatment, I am going to say yes to it.

Why? Because the good doctor is well aware of the risks of status epilepticus  and SUDEP (Sudden Unexplained Death in Epilepsy - a phenomena they tend not to tell parents about, by the way) and that the risks of these things happening dramatically increase in a person with poorly controlled seizures.

End of the day (and you will, no doubt, be happy to know, end of this post), the bottom line in is that if a new treatment for epilepsy that has thing kind of success rate can be found, naysayers, busy bodies and governments need to get the hell out of the way. Because, believe me, unless you live it, you. have. no.clue.

Telling It Like It Is

Kudos to Dr. Brian Hennen for telling it like it is when it comes to life for persons with developmental disabilities in Nova Scotia.

I met Dr. Hennen and his colleagues for the first time the end of May when I took the Blue Jay to a transition clinic for young adults in Halifax. And I must say that I was very impressed with what they were/are doing - armed with the latest clinical guidelines for the care of adults with developmental disabilities, Dr. Hennen (a psychiatrist) and Dr. Clarke (a family doctor), joined by a supporting cast of a few other doctors and nurses offer a complete assessment of the young adult's physical and mental health, making appropriate recommendations to the family doctor for continuing care and, where necessary, referrals to other specialists.

Yeah, I was impressed - because really, how often do individuals with special needs (particularly adults) appear to be after-thoughts found on the side of the road, left to fend for themselves best as they can? Whether it be the health system, the criminal justice or elsewhere, this sadly appears more likely than not.

So I guess I shouldn't have been surprised to see Dr. Hennen's op ed in today's paper - an op ed which essentially sets out Nova Scotia's history (the good, the bad and the ugly) over the past five years in dealing with persons with developmental disabilities.

Offering both kudos and criticism where appropriate, Dr. Hennen notes the self-assessment undertaken with much fan-fare in 2008 by the Services for Persons with Disability (SPD) program, following which fewer than half of the resulting recommendations were fully implemented to the two reviews conducted by that same program following reports of abuse at a residential care centre in 2010 and the terrible treatment of an autistic young man in the Braemore Home in Sydney in 2011; both resulting in numerous recommendations, few of which were actually acted upon.

From research showing that half of the 156 adult Nova Scotians with developmental disabilities interviewed were unhappy with their living arrangements to the April 2011 report to the Standing Committee on Community Services concerning the inadequacy of residential options available to Nova Scotians with developmental disabilities (including the fact that one-third of individuals referred with developmental disability and psychiatric or behavioural challenges did not actually have mental illness, but were troubled by the inappropriate residential situations in which they had been placed). Kudos to the committee’s members who actually had the guts to admit their lack of awareness of the key issues.

From the Early Intensive Behavioural Intervention program for pre-school children with autism started in 2005 (for which demand far outstripped supply) that five years later finally opened its door to allow access for all such children to the highly successful Access to Community Education & Employment (ACEE) program, piloted in 2007, that offers a one-year program in life skills and vocational experiences to youth following the completion of high school, which was finally awarded secure funding in 2009.

Alas, Dr. Hennen fails to note the ACEE program (like so many) is only available to youth who reside in the Halifax Regional Municipality, leaving many, many who could benefit from it out in the cold (and most likely stuck in high school until they are 21 due to the lack of any other options).

Looking forward, Dr. Hennen notes that although that five years ago teaching programs for health professionals had little developmental disability content, the new undergraduate curriculum provides medical students with a minimum of 13 hours of such content over four years, with a further six hours of inter-professional learning about developmental disabilities planned. Family practice trainees will also have defined learning experiences in each of two years of training.

Leaving us exactly where, you ask?

I could do no better than offer Dr. Hennen's final words in reply.

As are other jurisdictions, Nova Scotia will be judged by how well it supports its citizens with developmental disabilities in their bid to live independently and contribute to our community. As care providers, teachers, advocates and government departments, we know we can do better. 

Cross-posted at A Primer on Special Needs and the Law

Humpty Dumpty Strikes Again

So, here we go again ... what's up with some people's apparent need to define words however they think they should be defined, either because it suits their own immediate purposes or ... it gets them in the news, perhaps? Hell, if I know.

My latest little rant involving a "study" (using the term somewhat loosely) by Canadian researchers on the effect "spanking" has on a child's future mental health. Which, apparently, is a two to seven per cent increase in the chance of said child later developing mental illness, such as mood and anxiety disorders, problems with alcohol and drugs and more.

Don`t believe me? Check this out:

Between two and five percent of disorders like depression, anxiety, bipolar, anorexia or bulimia were attributable to physical punishment as a child, the study said.

From four to seven percent of more serious problems including personality disorders, obsessive-compulsive disorder and intellectual disabilities were associated with such punishments in childhood.

Oh, where to begin?

First of all, I don't know how you might define the term "spanking" but to me it does not necessarily include "harsh physical punishment," or "pushing, grabbing, shoving, slapping or hitting as a form of punishment from elders".

To me (and, might I suggest, most sane people), a spanking means just that - "spanking" or striking a child's bottom, aka buttocks, aka rear end. Coincidentally, Wikepedia offers the same defintition. Now, I'm not among Wikepedia's hugest fans (then again, who exactly is?) but still ... it is what it is. And something tells me that definition would be very similar, if not exactly the same, for that of most people who stumble across this blog.

To be clear, in my mind, there is a huge difference between smacking a child on the bottom and smacking them up the side of the head; between smacking a child on the bottom and pushing or shoving them around. And I certainly don't equate the term "spanking" with "harsh physical punishment".

But who knows? Perhaps our Canadian researchers grew up in households where any kind of physical contact as discipline was taboo. Or, perhaps, they grew up in families where they were routinely "smacked around".

I suppose we should just be grateful that, unlike other supposed research studies on "spanking", this study actually excluded both sexual abuse and physical abuse "that left bruises, marks or caused injury". Wait, does that mean they included sexual and physical abuse that didn't leave bruises or marks or cause "injury"? You have got to be kidding...

But, presuming it's even possible to move past that little wrinkle, my point is that I'm pretty sure their definition of what constitutes a spanking does not equate with the majority of the world's or, at least, the majority of my generation.

But let's move on, shall we?