Progress

One foot in front of another.  

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

Maybe, just maybe, we will get there someday.

When Up is Down and Down is Up

Good drugs ... let's admit it, we're all looking for some, right?
Okay, maybe some of us more than others.

But I am definitely looking for a good drug at the moment.

A new drug.

One that won't make me sick. 
One that won't make me crash my car. 
Or make me feel three feet thick. 

One that won't hurt my head.
One that won't make my mouth too dry.
Or make my eyes too red.

One that won't make me nervous ... 

Well, you know the rest.

Here's the thing - we're playing with my MS drugs at the moment. Upping this one and downing that one. And some days, like today, it feels like a real roller coaster ride.

So tell me, does anyone know?
Did Huey ever find that drug he was looking for?

Cuz, if so, I'm thinking he better be willing to share.

Or else, things might just get a wee bit ugly around here.
And trust me, nobody wants to see that.

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.

Science Gone Mad

UPDATE: Pogue made some good points in a comment and finding it a little unwieldy to include all the links in a comment, I decided to go the update route.

So first, Pogue's comment:

OK, not having seen what the original research proposal was it's difficult to say what funding was specifically approved for. As I read the article, the form of H5N1 they worked with is not contagious to humans, so I don't know how it was made "more deadly" other than for headline effect. I doubt that the proposal was to make it an airborne pathogen. In my circles that is referred to as "weaponizing a virus" and I'm not surprised that there is discussion about classifying it. The technique is the issue, not the specific result. When we get into a "government shouldn't have funded that research" argument be careful what you wish for - almost any research may have some potentially dangerous applications, so we shouldn't support stem cell or HIV related research, right?

First, let me say, that for me, personally, the issue of who financed the research is much less of an issue than that scientists intentionally set out to do this. [See my previous comment re: just because you can do something doesn't mean you should actually do it.]  Although, I must say, seeing who the backer was does make me stop and shake my head more than a little bit.

Moving on, I think I see where/why you got the idea that this specific strain of H5N1 is not "contagious to humans". Unfortunately, the quote was a little misleading.

The researchers, led by Albert Osterhaus of the Erasmus Medical Centre in the Netherlands and Yoshihiro Kawaoka of the University of Wisconsin, mutated the H5N1 strain of avain flu, which could not be transmitted between humans, to an "airborne" strain that can be transmitted in coughs and sneezes between laboratory ferrets, the best animal model of human flu.

What they were (rather badly) trying to say was that (prior to the present research) this strain of the virus was not transmittable between humans - from coughs or sneezes. However, although it's ability to infect humans was limited (transmission required direct contract with either infected poultry or contaminated surfaces) it has proven to be deadly when it does. In fact, you might recall back in 1997, when it spread through live-poultry markets in Hong Kong to humans, killing 6 of 18 infected people. So far, on average, it's killed roughly 60% of the humans it has infected. You can find a list of the confirmed human cases and mortality ratehere.

So as far as I am concerned both the technique and the result are the problem. I don't know whether they started out with the intention of "weaponizing the virus" (frankly, I have no idea what they might have been thinking at that point) but that certainly does appear to be the result.

I must admit I can't quite follow your comment about not supporting stem cell or HIV research because almost any research can have potentially dangerous applications. From what I know about stem cell research, the only down side is that some individuals have used aborted fetuses to harvest infant stem cells. Putting aside the fact that adult stem cells are suppose to work just as well (if not better, in most cases), I see that as a problem with how people choose to use new scientific knowledge as opposed to a problem with the research itself. And, quite frankly, I can't quite get my head around what you might be thinking about with HIV research.


Could somebody please explain this to me?

But, please, speak real slowly ... because you're going to have to work really hard to make me understand, let alone accept, this one.

A new report out Tuesday claims Dutch scientists have created a highly contagious, airborne form of the bird flu, which could potentially be capable of killing millions.

Unlike the normal H5N1 strain of avian influenza - which was only contagious through close personal contact with an infected person - this form can be spread by merely coughing or sneezing.

The lab-created bird flu strain was engineered by a team of scientists led by Ron Fouchier of Rotterdam's Erasmus Medical Centre. The researchers said the mutation only required a few variations to the original strain.

But wait ... it gets better!

The research was funded by ... wait for it ... the United States National Institutes of Idiocracy Health.  And ... and for the piece de resistance... officials of that same government have begged requested researchers not to release information concerning the virus to the scientific community.

Because ... you know ... if they did, well, maybe, just maybe, some terrorist group might get ahold of it. And you know, kill us all. The theory of unforeseen consequences always being at play and all.

But, hey, don't take my word for it.

The decision was made after the US government warned releasing the details could be kill millions of people if it was used as a weapon of biological warfare.

Of course, freedom of speech and scientific integrity being the laudable constructs they are, the idiots scientists involved have expressed concern "about withholding potentially important public-health information from responsible influenza researchers".

As to the justification for that concern - apparently, "many scientists within the influenza community have a bona fide need to know the details of this research in order to protect the public, especially if they currently are working with related strains of the virus".

Right, that.

And yet it seems rather self-obvious that there would be a lot less need to know and a lot less to protect the public from if this particular virus hadn't been so painstakingly created in the first place.

I mean just because you can do something ... does that always mean you should?

Just for giggles, I note that the scientific community isn't all that impressed with the request to have the research information withheld; first, because they note that, perhaps,the government ought not to have authorized the research if they did not know how to deal with it and, secondly, it's all a little too late considering that several details had already been shared with hundreds of researchers and governments in open meetings.

So, has everybody had their flu shot for this year?

Water Water Everywhere?

Once upon a time.

Once upon a time, I use to be heavily involved in international development issues, particularly as they related to children.  Yup, that's my catch, children.  Always has been, likely always will be.

But in my pre-disability days, before I knew what an IPP was, long before I had ever heard of a Program Planning Team (let alone knew that I was to be a member of many) ... I was involved with a group called Results Canada.

Results (they are active in many countries around the world including Australia, Germany, Japan, Mexico, United Kingdom and the United States) is a volunteer political action group dedicated to "creating the political will to end global poverty and needless suffering, and to demonstrating that individuals make a difference when they exercise their political influence".  It was pure political advocacy work - coordinating a media strategy; letters, letters and more letters to newspapers and politicians; community outreach and fundraising to keep the mostly volunteer organization going.

It was good work, work where you felt you might just be making a difference in the world.  I once had a politician ask me why I, personally, was involved in this work.  I walked him to my office and silently pointed to the picture on my desk of my then 3-month-old child. Enough said.  He got it.

Can one person really make a difference? Yes, I believe they can.  And how many times is that difference magnified when that one person works in unison with others of a like mind?

But life took over - a challenged child with a significant health issue sucked up much of my time and emotional and mental energy.  And as she grew (particularly as she got closer to school age), I realized that a person can only do so much.  And it seemed that there was much I could and should be doing to help others right here in my own Province.  I still supported (and continue to support) what Results is trying to accomplish but my political activity shifted much closer to home as I focused on assisting challenged children and their families navigate our province's educational and community services, to ensure that they had access to the services they are entitled to.

But then I received an email last week - an email "reminding" me that this year's Blog Action theme is water - access to clean water in developing countries, the over-consumption of water in developed countries, water and the environment and "water solutions".  One item in particular in that list struck a chord in me - and you might just guess why based on my previous involvement with Results.

One of the many issues we dealt with at Results was access to clean water - can there be any more basic a need?  Monthly actions and ongoing campaigns were picked based on strategic opportunity, political climate, context, and impact and issues were usually ones where there was a proven, cost-effective solution and for which there are not many champions.  Issues like child and maternal health, sanitation and hygiene, primary education and microfinance - that last of which is an amazing subject, by the way, well deserving of its own post. Perhaps for another day.


Did You Know?
Did you know that unsafe drinking water and lack of sanitation kills more people every year than all forms of violence, including war?  Water, or rather lack thereof, causes 42,000 deaths each week.

That more people have access to a cell phone than to a toilet? Today, 2.5 billion people lack access to toilets. This means that sewage spills into rivers and streams, contaminating drinking water and causing disease.

That every day, women and children in Africa walk a combined total of 109 million hours to get water? They do this while carrying cisterns weighing around 40 pounds when filled in order to gather water that, in many cases, is still polluted.

That it takes 6.3 gallons of water to produce just one hamburger? That 6.3 gallons covers everything from watering the wheat for the bun and providing water for the cow to cooking the patty and baking the bun.

That the average North American uses 159 gallons of water every day – more than 15 times the average person in the developing world? From showering and washing our hands to watering our lawns and washing our cars, we use a lot of water. To put things into perspective, the average five-minute shower will use about 10 gallons of water. No wonder the Navy doesn't allow Hollywood showers!

While these facts may be grim, there is hope for real solutions as more and more people around the world are waking up to the clean water crisis. Earlier this year, the UN declared access to clean water a human right and groups like charity: water and Water.org continue to work tirelessly to bring water access to the developing world.

No, I am not advocating that we all dress in ashes and sackcloth and repent for our sin of living in an industrialized country.  I know I'm not going to anyway!

What I am suggesting is awareness - it's been a long time since I, myself, have turned my mind to these issues on anything approaching a regular basis and when I looked today at the statistics on how many children die every day from lack of primary health care and clean water or for the want of simple and cost-effective interventions such as breastfeeding, prevention of mother-to child transmission of HIV, immunization, micro-nutrients, and oral rehydration therapy to treat diarrhea .... it makes me very very sad.  It reminds me of just how lucky my family and I are.  And it turns my mind back to the obligation we, who have so much, have to those who have so little.

Margaret Mead is famous for the words, "Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.”  

Whether we work in concert with those of like mind (be it paid or volunteer), teach and remind our children that there is a much, much bigger world than that they can see from their back yard or direct our attention on occasion to those charities with a proven track record of dealing successfully with some of the most basic of human needs around the world, I believe know we all have a part to play.

Headlines: Clarification

Just to clarify, what really irritates me about this is that nobody I am neither asking nor suggesting that any provincial government should be paying out for liberation therapy at the moment.

What we're talking about here is funding for clinical trials.

Clinical trials, people.

After all, isn't that what everyone has been talking about - you can't possibly expect us to provide funding for new treatments unless we know they're both safe and effective? Anecdotal evidence just doesn't cut it, right?

Okay, fair enough.

But.

Exactly how much research is going to occur if nobody funds it?

Then again, I am probably looking at this all wrong.

I mean what better way to slow the rising costs of health care budgets then to tell people that they must patiently wait for clinical trials? And then make sure those same trials never occur?

It's brilliant.

Headlines

Yesterday, the Province of Saskatchewan stepped forward as the first in Canada to fund clinical trials for the latest media darling in the treatment of MS, commonly known as "liberation therapy".

In a striking departure from his political counterparts across the country, Saskatchewan Premier Brad Wall says his government will finance clinical trials of liberation therapy, a contentious experimental procedure for multiple
sclerosis patients.

“There isn’t unanimity on the issue, I understand that,” Mr. Wall said on Tuesday. “But ... the province of Saskatchewan is willing to play a funding role.”

The move shunts Saskatchewan to the forefront of Canadian efforts to introduce a treatment that has researchers, politicians and the MS community divided over the roots of the mysterious nerve-wasting disease and the pace of Canadian medical research.

By the by, Premier Wall noted that Saskatchewan "has the highest rate of MS in the country", the issue being somewhat personal for him, apparently. No doubt because "there isn’t anybody who doesn’t have a family member or friend who is battling it”.

Did I ever mention that yours truly I your humble scribe hail from Saskatchewan?

And based on today's news reports, it looks rathter unfortunate that I hadn't stayed there.

Ontario will not follow Saskatchewan’s lead and fund clinical trials of a new operation that offers hope to people with multiple sclerosis, Premier Dalton McGuinty said Wednesday.

* * *

Manitoba Premier Greg Selinger said Wednesday he won’t commit to funding trials of the liberation treatment.

Selinger said the Manitoba government is working with other provinces to continue to find the best ways to treat MS, but he wouldn’t commit to funding clinical trials.

No word on Nova Scotia yet ... Wait!

Wow, looks like a good thing I wasn't prepared to hold my breath.

So much for that idea.

One note of dark humour though (we might as well laugh, right?).

While slamming Nova Scotia's NDP party for this decision, the Liberal Health Critic might just have stepped in it.

Liberal health critic Diana Whalen said Nova Scotia has the highest per-capita rate of multiple sclerosis in Canada, so it makes sense to conduct the research in the province.

So, they can't both be right, can they?

I mean I couldn't possibly be that unlucky ... consider that I already live in a country known for having one of the highest prevalence rates of multiple sclerosis in the world.

Then, to add insult to injury, did I really move from the province with the highest per capita rate of MS in Canada to the province with the highest per capita rate of MS in Canada?

Geez, if it wasn't for bad luck, I would have no luck at all ...

Running Walking Scared

I hate to be a whiner.

Or, perhaps more accurately, if 'n I'm going to whine, can I at least have some cheese with that?

Blogging remains light. Both here and at the other blog. And that bothers me because, after all, it is me, so of course I have things to say. And yet, as much as that bugs me, it's really the least of my concerns.

In the past 24 hours I found myself trying to express (with conviction, nonetheless) the same thought, albeit for very different reasons, to both my husband and a good friend. Namely that although there is much in life we can't control, the one thing we always do have control over is our attitude, how we choose to respond to what life throws at us.

Sounds rather noble, doesn't it? Ain't I smart?

The problem is that I'm feeling a mite hypocritical at the moment. Because although I tried to give myself a rather stern talking to this afternoon on the very same topic, I seem to have trouble taking my own advice heeding my own words of wisdom. In other words, apparently I am having a bit of difficulty adjusting my own attitude to what life is throwing at me at the moment.

Not to put too fine a point on it. But. I. Am. Scared.

And wimpy. And whiny. And more than a little bit cranky too.

I haven't been feeling well lately. That you know.

What you most likely don't know is that I'm not exactly starting to feel any better. And I could very easily freak myself out just a little and start to believe that things are actually getting worse. But I would really rather not go there.

Which leaves me here. Wondering if I should create a new blog label. "Warning - Whining Ahead".

And struggling to control my own emotions. To not "freak out", so to speak.

I go back to see the specialist in May. And my plan had been is to simply wait it out until then. Keep on keepin' on.

Which is what I will do suppose. Seeing as how I don't seem to have many other options at the moment.

And yes, yes, I did question whether this was an appropriate blog post. And then, after giving the matter the careful consideration it deserved, decided ... to hell with it.

It's my blog. I'll cry if I want to.

The Centre. Can. Not. Hold.

I really love blogging.

I thought I would tell you. Just in case you couldn't tell.

I've been at it for two and a half years now and manage two blogs. Admittedly, some days better than others.

And I am very conscious of the fact that if you blog on something approaching a semi-regular schedule, they will come. Of course, the converse is equally true. If you don't ... they won't.

But as I posted in my Under the Weather post, I have not been feeling well as of late. Really not feeling well. Not a simple cold or some other type of virus. But a major flare-up of a chronic health condition.

And so it as that life is piling up at the moment. As is, not coincidentally, the pile of stuff on my desk about which I would like to blog.

So now I ask the very serious question .... What's a middle-age woman girl to do?

And the answer, in all honesty, is that I don't know.

Obviously, this is about stuff a lot more serious than just blogging. [She says with no small amount of chagrin ... just blogging, indeed. Sacrilege!]

Work.

Two teenagers. Both running in very opposite directions at the moment.

A house. A home. A family.

I've been to the doctor. We've played with my meds. [Yes, doctor. More drugs. Please. More drugs.] So for now, I suppose, we wait and see.

And so it is that I ask my semi-regular following of two to stick this out with me. I want to keep this up. I really do. But, for the moment at least, it just doesn't seem doable.

I will still, no doubt, be found at my regular haunts (you know who you are). But as for own blogs ...

Now having said that, I could well be back in a day or two. Bright-eyed and busy-tailed. Or some variation thereof. So, hey, if writing this post ironically results in my "cure", I'll be the first in line to cheer. But if not ... all I can say is that I will be back. Eventually.

Until further notice then.

Under The Weather

So much to post about it. Such little energy.

What's a girl to do?

It was pointed out to me that the recent post in which I expressed my pride in the Canadian military's efforts in Haiti did end with a bit of cliffhanger. Somewhat intended, to be sure. It's just that I didn't intend to leave it hanging this long.

I finished Sarah Palin's book and the same intrepid soul who pointed out the cliffhanger has suggested that I post my final thoughts. Which I'm okay with that but ...

Then there was a nice piece in the Jan 19th edition of the Chronically Horrid (alas, too old to access now) concerning foreigners' attitudes towards Canada's seal hunt - something about them eating horses in Europe. 'Twas to be aptly titled "Hypocrisy".

And from the darkest corners of my mind something about climate change. And our upcoming Purple Day events.

Well, I hope you enjoyed that little stroll down memory lane because, for now at least, I'm afraid that's all you're going to get.

I am officially ill. Sick, as they say.

Afflicted. Ailing. Below par.

Aka feeling awful. Feeling rotten. Feeling terrible. Indisposed. Infirm. Laid low. Off my feet (that one is very fitting). Out of sorts. Peaked. Poorly. Run-down. Unwell.

Did I, by chance, mention under the weather?

And so, until I get this under control, I'm afraid I might be a bit scarce. But hopefully not for too long.

Until then, I bid you a (temporary, to be sure) fond farewell.

Illogical Logic, Irrational Fear?

The story of the 13-year-old boy from Ontario who died on Monday is enough to scare any parent.

Almost enough to scare this parent into reconsidering the vaccination issue for her kids. After all, Kit Kat has mild asthma and the Blue Jay has a neuro-developmental disorder, which presumably puts them both at higher risk. Hell, even my own MS, some might argue, might put me in a higher risk category.

But here's my problem.

There's still everything Dr. Mercola has to say on the subject. And although this video interview is quite lengthy, it's worth a listen. He makes a lot of sense. And the interview will tell you a lot more than the text on the page, which makes some valid points on its own.

My two problems in particular have to do with the fact that although we are told repeatedly ad nauseum that flu activity is increasing in the United States, with most states reporting "widespread influenza activity", a three-month-long investigation by CBS News revealed some very different facts.

The CBS study found that H1N1 flu cases are NOT as prevalent as feared. A CBS article even states: "If you've been diagnosed "probable" or "presumed" 2009 H1N1 or "swine flu" in recent months, you may be surprised to know this: odds are you didn't have H1N1 flu. In fact, you probably didn't have flu at all."

Apparently in late July 2009 the CDC advised states to STOP testing for H1N1 flu, and they also stopped counting individual cases. Their rationale being that it was a waste of resources to test for H1N1 flu because it was already confirmed as an epidemic. Okay, fair enough.

But. Just like that virtually every person who visited their physician with flu-like symptoms since late July was assumed to have H1N1, with no testing necessary because, after all, there's an epidemic.

Before beginning their investigation, CBS News asked the CDC for state-by-state test results prior to their halting of testing and tracking. The CDC did not initially respond so CBS went to all 50 states directly, asking for their statistics on state lab-confirmed H1N1 prior to the halt of individual testing and counting in July.

What did they find? CBS reported:

"The results reveal a pattern that surprised a number of health care professionals we consulted. The vast majority of cases were negative for H1N1 as well as seasonal flu, despite the fact that many states were specifically testing patients deemed to be most likely to have H1N1 flu, based on symptoms and risk factors, such as travel to Mexico."

In other words, the diagnosis of swine flue is being repeatedly made NOT based on any lab tests. In fact, the diagnosis is made even when the test results prove otherwise.

And just to back up that little observation, last night I was watching the CTV news. Which was where I first heard the tragic (to say nothing of scary) story of Evan's death. But that piece was followed by another piece on the mass immunizations programs now beginning in which it was stated that you can self-diagnose the swine flu.

Get this. Supposedly, if you have fever and two or more of the following symptoms, you can diagnose yourself with swine flu. The additional symptoms included things like

• cough
• sore throat
• extreme fatigue
• headache

Well, excuse me, but based on those criteria, I must have had the swine flue at least 500 times in my life. In which case, I should have built up a whack of immunity and pretty well be swine flu proof by now, right?

Yeah. And that logic seems to make as much sense to me as the constant non-ending hype demanding that I must vaccinate myself and my family against this great pandemic.

By the by, I'm sick. Have been for two and a half weeks.

It sucks. It's very hard to get through the day without a two-hour nap. Sinuses, bad. The cough is intermittent. But I think a fair bit of it is coming from my nose draining, if you know what I mean. Fever? Maybe. I think so. Sometimes.

I have no doubt my doctor will tell me tomorrow that I have swine flu. But I won't buy it unless he can prove it to me with a blood test. Because, personally, I am 99.5% sure that I don't. That last 0.5% only because anything can happen.

Although if I do, I would actually be okay with that. Because I can get it over with and forget about it. And everyone else in the house has been exposed, too. So we won't have to worry about that any more, will we?

Enough Said

"Epilepsy strikes and kills about as many people every year as breast cancer, which gets five times more federal funding."


Watch CBS News Videos Online

More Americans are suffering from epilepsy than Parkinson's, multiple sclerosis and cerebral palsy combined.

*Please watch the video*

H/T to Take Five

Sick and Tired

It's official.


I'm sick and tired of being sick and tired, I am.

About That Needle in the Haystack

Far be it from me to recommend to anybody one way or another whether they or a family member should be vaccinated for swine flu.

But I have no hesitation in being an advocate for individuals having all the knowledge possible and making an informed choice.



No, I'm not suggesting that you should make a decision one way or another based on this piece, either. That would simply be foolish.

But admitting my own biases upfront when it comes to vaccines [my older sister suffered severe results from vaccination encephalitis many years ago from a small pox vaccine and I believe vaccines triggered (not caused, but triggered) my oldest daughter's challenges], I only suggest that people take the research plunge and make a decision based on their own perceived risk factors as opposed to blindly taking the vaccination plunge.

You could certainly do worse than to start your journey with Dr. Mercola.

Buried Like a Needle in a Haystack

Speaking of the impeccable integrity of journalism, I found it a mite bit strange last week when I came across this story about the possibility of seasonal flu shots raising a person's risks of contracting swine flu buried deep in Section B of Nova Scotia's provincial newspaper.

Strange because Section A (in other words, the entire front piece) of that day's paper, all 10 plus pages of it, made no mention of what could have turned out be such an important little fact. Instead it was full of stories about like this one, setting out Nova Scotia's plan for inoculating its residents against both H1N1 and the seasonal flu and others concerning whether or not pharmacists might be used to give the H1N1 vaccine.

It's always good to see even, unbiased reporting, says I.

Then again, in their defence, I suppose they might have been a little concerned that if they put the story in the front half of the paper, there might just be some readers out there gullible enough to think that there could possibly be any legitimate concern [scroll to the bottom of the link] about this newest, or any, vaccine. And we would never want that to happen.

HUH?!

Which would pretty well sum up my reaction upon reading this article in today's edition of the Chronicle Herald which portended to delve into the "culture clash" between the Western world's child protection systems and various religious and cultural minorities. Due to the writer taking a major left turn halfway through the article.

After noting that "not one of the world’s major religions sanctions child abuse" [ED. A point open to debate - after all, if female genital mutilation isn't a form of child abuse, then what, pray tell, might be?], that "bridging the cultural gap in western countries would be easier if professionals, such as doctors who are compelled to report child abuse to the authorities, were exposed more often to people of diverse backgrounds", the reality that many medical graduates have never met a Muslim, a Sikh or a Sunni and that UNESCO reports some 250 million youngsters worldwide "suffer child abuse in the form of slavery, bondage, serfdom . . . child pornography, prostitution and yes, female genital mutilation", completely out of left field, at least for this reader, the article goes on to note that in Canada, "the biggest legal controversies involving child protection and religion have been well-publicized disputes involving Jehovah’s Witness families and their views on blood transfusion". According to Queen’s University law professor, Nicholas Bala.

My problem with this coverage of the fifth World Congress on Family Law and Children’s Rights in Halifax is the comparison of the issue of blood transfusions in Witness families and child abuse in any form, let alone slavery, bondage, serfdom, child pornography, prostitution and female genital mutilation.

As Mr. Bala rightfully notes, in cases of Witness children younger than age 12, the situation is generally pretty cut and dried - within a blink of the eye, the child is made a ward of the state, given a blood transfusion and then returned to their parents. Although this latter point he somehow neglects to mention. As these children become older (usually ages 12 to 16) and begin to articulate their own religious views, the courts are placed in the position of struggling with how much weight to give to the child’s wishes.

So tell me this, please - although I certainly make no argument against a valid interest in the state intervening if doctors feel a child needs life-saving medical treatment, is this really akin to child abuse?

Unfortunately, I know a fair bit about your more typical child abuse cases (leaving out of the discussion issues such as child slavery, bondage, serfdom, child pornography, prostitution and female genital mutilation for the moment) due to my regular reading and review of such legal decisions in my current work.

Two thoughts come to mind - first, I find it difficult to characterize a parent's refusal to provide consent to a blood transfusion for their child for religious reasons the same way as the horrific stories of neglect and abuse I regularly read and, secondly, trust me when I say that the children involved in such cases where abuse is found are rarely never simply thrown back into the offending parent's care, case closed, end of discussion. At least not these days. Not in this jurisdiction. If a child has been found to have been abused, they are not going back home without, at a minimum, supervision, follow up and the parents having participated in appropriate training and services.

And as far as comparing issues such as child slavery, bondage, serfdom, child pornography, prostitution and female genital mutilation to a parent's refusal of a blood transfusion for their child ... pulleaze. Give. Me. A. Break.

Granted, both child abuse and parental refusal to consent to medical treatment are child protection issues. But in my mind, to lump together child abuse (even in its more common forms of sexual, physical and mental abuse and neglect, let alone it's even more horrendous forms) with the issue of state intervention for children whose parents refuse to consent to a blood transfusion as done in this article is nothing if not disingenuous.

I also can't help but note the article's failure to make any mention of those cases where adult* Witnesses have had blood transfusions forced upon them agains their express wishes (to the extent of doctors tranquilizing patients against their wishes or even having them forcibly restrained). Which, while perhaps not technically relevant in a discussion of child protection issues, might be material in regards to full disclosure on the issue of the interaction between members of this particular religious sect and the medical profession around their medical care.

In the interests of full disclosure, although I most definitely am not a member of the Jehovah's Witnesses, I was raised as one and, as such, am quite familiar with both their beliefs and their history.

* See para 26 of the linked decision

Unacceptable

The word barely covers it.

Obscene. Disgusting. Pathetic. At least they come somewhat closer.

That a funding skerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sadly, perhaps, not surprising.

But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.

For mother Crystal Hart, it means she may have to say good-bye to her daughter, Priscilla.

"I want her to get the services that she can get," she said while wiping tears from her eyes.

Priscilla Hart has Ritscher-Schinzel Syndrome. She can't speak or eat and needs to be fed through a tube. She requires constant care from a respite worker who looks after Priscilla when her parents go to work.

The Norway House Cree Nation has been paying for those services, which are required by 37 children on the reserve.

However, the band said the money has run out and the services will end May 31.

And this four years after another sick child, Jordan River Anderson, spent the entire five years of his young life in a Winnipeg hospital because when doctors were ready to release him to a medical foster home at age two, provincial and federal government officials argued over who should pay for it. They couldn't even decide who would cover the cost of a special shower head he needed, for heaven's sake. Jordan never left that hospital and eventually died in February, 2005.

But don't worry, they learned their lesson from that. Or so they would have us believe.

In December, Members of Parliament vowed never to let such a thing happen again and unanimously voted in favour of a private members motion providing that children should come first when it comes to funding disputes and "should receive the same level of service … as children with similar needs living in similar geographic locations". Because the politicians apparently needed just a little help to figure that one out."

Aptly called 'Jordan's Principle', it apparently still isn't working so well.

Despite a letter penned by Minister of Health Tony Clement in 2007 professing that "Indian and Northern Affairs Canada is working closely with Health Canada as well as provincial and First Nations partners to ensure that jurisdictional issues do not impact a child's quality of care" and despite the Premier of Manitoba declaring that his province would be the first to implement Jordan's Principle, les enfants terrible rage on.

In an interview with CTV News, Manitoba Health Minister Keri Irvin Ross said the provincial government is not required to pay for the children's care. "These issues are a federal responsibility," she said. "We need to make sure the federal government is held accountable for it, but we are committed to supporting this community and these children."

But not with any funding. Irvin Ross said the provincial government is offering its support by working with the Norway House Cree Nation in its negotiations with Ottawa. Irvin Ross said the fact that the provincial government is at the negotiating table is "new ground", and is a signal of its support for Jordan's Principle. She said the federal government has yet to respond to numerous letters requesting its involvement in finding a solution.

Perhaps it's time for some new election issues.

For example, where does the Nova Scotia government stand when it comes to Jordan's Principle? More mere lip service or is anyone really willing to put their money where their mouth is?

And as for Ottawa?
They should be ashamed of themselves. Utterly. Ashamed.

Move Over Diamonds

So yeah, I do have some serious stuff I want to blog about.

But when I worked in the city all day today and I am going to a conference all day tomorrow and it's been a long week ... well, some days we all need a chuckle, right?

Now everyone knows that diamonds are a girl's best friend. And I'm sure there's some truth to that.

But after dropping a comment this morning over at Take Five about whether health care was actually a "luxury", when I saw this video tonight I thought it was perfect.


Boyfriend With Health Benefits - Watch more Funny Videos

Anybody remember that old song "Que sera, sera. Whatever will be, will be"?

USA. Canada. Wherever.
After all, if you can't laugh at yourself, you might as well laugh at somebody else...

H/T to Pipecleaner Dreams for the video link

The Last Day of the Rest of Your Life

Can anything be worse than the pain of losing a child?

Personally, I feel like I know a bit about grief and mourning lately. But I can't even imagine, can't even begin to fathom, the pain of losing a child. It's beyond me.

I know of parents who have survived that kind of loss. Who have, in fact, not just survived (which I am afraid might well be beyond my capabilities) but even thrived, managing to transform that tragedy into something amazingly beautiful. Something that helps other children and their families. I am honoured and humbled to count such people amongst my friends.

But imagine not just losing your child. Not just. Like that could not possibly be hard enough. Imagine being accused of killing your child. Imagine being convicted and sentenced for your child's death. Imagine spending the past 14 years in prison.

For killing your child. Incarcerated for 14 years. As you mourn the loss of your child's life. And the loss of your own. Because you know what no one else seems to recognize. That you, too, are an innocent victim. That you could never, you would never, you did not harm your child.

That, you, yourself, are the innocent victim of someone else. The pediatric pathologist from hell.

On Thursday, 14 years after being convicted of killing her two-year-old son, Marquardt was granted bail.

Though the courts haven’t yet decided if they’ll hear her appeal, Marquardt was beaming after being released.

"Today I finally have my day," Marquardt said outside the Ontario Court of Appeal, struggling to catch her breath through her tears. "This is my day. I’m out. I made it."

She was the last known parent who remained behind bars based on the testimony of Dr. Charles Smith. Marquardt was convicted of second-degree murder in the death of her son Kenneth and was handed a life sentence in 1995.

She said she found the boy tangled in his bedsheets, but Smith said he was mothered or strangled.

Marquardt’s lawyer James Lockyer said not only did she not kill her son, but no crime was ever committed. Kenneth had seven documented trips to hospital for seizures, Lockyer said.

Smith’s findings have since been rejected by six forensic experts, including one who said the epileptic boy could have died from a seizure.

"Pathology can no longer determine the cause of Kenneth’s death," Lockyer said outside court.

"There’s every reason to believe that he died as a result of seizures that he’d suffered from all his life."

SUDEP, or Sudden Unexplained Death in Epilepsy, is not only a tragedy, but also, exactly what it says.

The sudden. Unexplained. Death. Of a person with epilepsy. Often in their sleep. Uusally without any evidence of a seizure having occurred. But then again, if the person was asleep (and alone), who would know for sure whether or not there had been a seizure?

It's not something that's talked about a whole lot. Not information that many parents of children who experience seizures are made privy to. 'No need to upset them. To scare them. About, you know, something that will never likely happen', the thinking goes.

Not that common, perhaps. But SUDEP does account for 10% of all epilepsy-related deaths. Admittedly, 85% of these fatalities occur between the ages of 20-50 years. Still, the incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year which is at least 10 times of the sudden death rate found in the general population. Which means that if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".

Yeah. That's what I said.

Perhaps that's what happened to Tammy Marquardt's little boy. Perhaps it was something else. But either way, it appears that there was no credible evidence that his mother was at fault.

I can only wish her well, hope that her legal troubles are soon over and offer her my deepest sympathies, both for the loss of her child and for the past 14 years. And struggle with the realization that yes, there is something worse than losing your child. That would be losing your child and then being accused of and convicted for his murder.

And as to the other tragedies in this story, the life of a two-year-old little boy snuffed out and the higher risk of death for persons with epilepsy ... I can only offer this.

Thursday, March 26th is Purple Day.

Which I will be blogging more about soon. But as a recent slogan I've seen says so well ...

"A cure may be found someday.
But someone needs your help today".

It's A Terrible Thing To Think But ...

Thanks, at least in part, to Nova Scotia's new Protection of Persons in Care Act, there has been an increase inthe number of reports of incidents of abuse and neglect in Nova Scotia nursing homes.

Not necessarily an increase in incidents but an increase in the reporting anyway.

Another report out today.

Staff at a Nova Scotia nursing home repeatedly left infirm patients unattended while they went for smoke breaks, including one resident left lying on a bathroom floor, says a Health Department inspector’s report.

The three employees at a unit at the R.K. MacDonald home in Antigonish took their seven-to-15-minute cigarette breaks together outdoors on "several occasions" during the May 5-6 night shift last year.

Donna Dill, director of monitoring at the continuing care division of the Health Department, described the incident as "serious" because "if residents are left unattended anything can happen."

"They’re in nursing homes so they’re supervised and attended," she said in an interview.

The inspector wrote that "when the staff were in the courtyard at midnight, an incident occurred where a resident was found on his bathroom floor. The call bell was pulled by the resident’s roommate, who was requesting for the bathroom light to be turned off."

The report adds there "is no indication as to whether the call bell was ringing while the staff were in the courtyard, or had it just been pulled once they were back in the building."

The report said the bell couldn’t be heard outside the unit, which has 39 beds.

Incidents like "a wet, soapy facecloth " being "placed in a resident’s mouth by a staff member while completing morning care" after the resident lunged at the worker's chest and a question as to the appropriateness of a resident's "relationship" with a female resident due to a decrease in the woman’s mental competency in a home which was understaffed are particularly troublesome to me.

And not just because such things are happening to our senior citizens.

We were very close to having my Mom placed in a nursing home. In fact, we had put her name on the list for placement last February. It was just after we were forced to put her back in the hospital last summer that her name came up on the list for her preferred home. Which spot they promptly gave to someone else, citing a need to reassess her given that she was in hospital. Which, by the way, they never quite got around to doing.

At the time, we were quite upset by the whole thing. Earlier that year, my Mom, my brother and I had visited nursing homes in the local area and had all agreed without question that this was the one we wanted. And I'm sure (or I would like to be) that it would have a really nice place for Mom.

But reading these reports of neglect and abuse ... makes me almost think that it was better that it ended as it did. Because although chances are that she would have received as good or better care in the nursing home as in the hospital, I can't really be sure of that now, can I?