One Sick Mother

What Would Milton Do?

I guess the world and it's mother knows by now that the Milton Hershey School turned away a student because he is HIV positive.

I cut & pasted this directly from the Milton Hershey School's own website.

Every day children are born into neighborhoods fraught with extreme poverty and limited opportunities. Many parents are unable to provide their children with the support they need to reach their potential. This is the reality of at-risk children in communities throughout the nation. Milton Hershey believed that providing children from families in need with a first-rate education and the support of a nurturing and caring community would enable them to break the chains of poverty.

I guess they forgot to add the following line

...But only if their HIV status is negative.

I guess one teen won't be reaching his potential because they are afraid he will have unprotected sex with another teen. At least, I hope they think "another teen" and it's not a case of a faculty member who doesn't want to use protection. Seriously. I was raised in an orphanage. You have to question these things. 

Milton Hershey founded this school because his own schooling was quite fraught. He wanted to create a place for disadvantaged kids to learn.

I think being HIV+ is a pretty big disadvantage for a kid to have.

I wonder what Milton Hershey would say or do if he were around today?

 

Would he support the school's decision, I wonder?  What do you think?

"The value of our good is not measured by what it does, but by the amount of good it does to the one concerned."
                                            -Milton Hershey

 

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

Scamming in The Name Of Religion

UPDATE:  The church did apparently return (some of?) the funds after the story broke (and started to go viral). It goes to show what can be accomplished through advocacy and word of ...computer.

But I'm not changing a word of my original piece, which follows (we may choose to forgive, but never forget):

 

Most of the scam artists I write about are selling "medical" products and they profit off peoples' pain and desperation.  The worst of these -by far, is Gordon's Herbal Research Center, which is supposedly based in New Zealand, but is actually based in Pakistan. 

Today I heard about a new scammer, who is really  
based in New Zealand this time (Napier). This guy is every bit as despicable as the snake oil vendors. His name is Bruce Collingwood. Bruce purports to be a pastor, and is based at this ...  um "church".  Here is Brucey with his wife, looking buff, wearing what looks like a sparkly-accented shirt and a fetching medallion.

You can find the "church's"  website here.  Note how they mention their new building, right on the home page.

So somewhere along the line Brucey came in contact with a gentleman by the name of Whetu Abraham, a man who suffered a serious accident several years ago, leaving him with brain damage and in a wheelchair. Brucey Baby and/or some of his congregation used to visit Mr Abraham in the nursing home where he lives, soliciting donations, leading Mr Abraham to believe that if he didn't give generously, he wouldn't go to Heaven.  It so happened that Mr. Abraham had a nest egg of about $20,000 dollars.

He doesn't have it any more.

Yes, Mr Arbaham's money somehow all made it to the "church" of Bruce Collingwood, "freely" given by the poor man under threat of Hell.

Now he can't even afford to have his teeth fixed, while the "church" got itself a new building.

 

...and -funnily enough- they don't come to  visit him anymore.

Except once this story broke, Brucey suddenly stopped by with a disclaimer for Mr Abraham to sign, and loomed angrily over the poor man's wheelchair until he had to be removed from the premises by staff (I can't make this shit up).

Brucey is a nice guy, huh?      

Here he is, sitting in what looks like a new leather comfy chair, wearing what looks like a silk shirt, while the man who probably helped PAY for those things can't even afford dental care.

...all in the name of "God". 

Really?  Is that how Jesus would behave?

Please let Brucey Baby know what you think of him. His contact details are below.

"The Oasis" 15 Owen Street

Napier 4110
New Zealand

Pastor: Bruce Collingwood
Phone: (06) 835 6480
Fax: (06) 835 6485
Mobile: 027 630 7738
Email: theoasis@xtra.co.nz

I was going to contact the head of the Elim Movement, to which this "church" belongs, and ask if Brucey's behaviour is in keeping with their philosophies.  And then I saw a picture of their brand new headquarters, opened in 2009.

 

...nevermind.  I think I probably know the answer.

I should give a shoutout to the nursing home staff, who seem to have really tried to look out for Mr Abraham's interests. Too often we hear bad things about nursing homes, but there are many good facilities out there and a very great many caring and dedicated staff.

They are much needed.

Et tu, Tendons?

About five or six weeks ago, I performed an action, which I perform hundreds of times a day, and I got this excruciating pain across the front of my wrist, which radiated both directions, up my forearm and down my hand. I didn't yelp. I practically YOWLED. Unfortunately, both kids were present.

"Mom are you OK" 

"Yes, Love. It's just my hand"

"Did you pop a bone?" (don't you love the casual EDS shorthand we have in our house?)

"Actually... No." (I don't know what I had done. I just knew it wasn't a bone. And it hurt!)

My hand was hot, tender, very painful and virtually unusable for hours afterwards. Ever since then, certain movements can really, really  hurt. I knew it was soft tissue. The pain wasn't IN the joint, but around it and radiating from it. I thought maybe I had a bone out of place in my wrist, which was effecting ligaments or tendons.  I tried to fix it.  Unfortunately I was at the dinner table at the time. Grace said  (in exactly my tone of voice) "Do you HAVE to fix your bones at the dinner table? That's disgusting, Mom!"  (Ha!)

I kind-of hoped that maybe it would go away. Certain movements, like pincer grasp seemed to aggravate whatever-it-was, so I tried to avoid these and rest my dominant hand as much as possible (again: Ha!). 

Then one day I used a manual can opener and YOWCH!  I ended up on the kitchen floor, actually crying with pain.  From soft tissue!  Who knew?  So I decided enough was enough and called the Rheumy the next business day.  I finally got to see her this week.

I have tendonitis in my wrist. Thankfully, it is not De Quervain Syndrome (thank you, God!).

"Can I still knit?" 

"Does knitting make it worse?"

"No"

"Then you can still knit"

(oh good)

So I have a diagnosis and a treatment plan, which is good. However, I can't help thinking that here is more connective tissue that has let me down. First it was the ligaments, now tendons are complaining.

What's next?  Will my cartilage take out a work-to-rule (and WTF IS a work-to-rule anyway?)

But -Good news: I think I have finally found an application where Voltaren gel actually works! 

Happy days.  (or something) 

Missed My Bloggiversary

Again.

For some reason, I had Nov 27th flagged in my head as my  Bloggiversary date. But I just looked back on my first post and it is dated November 10th, 2007.  I thought then that I wouldn't be blogging for long. Not blogging about searching for a diagnosis, anyway. I figured I'd be able to riff on all sorts of crazy stuff; that I would move on to use the other meaning of "Sick" in the blog title (I had it all planned, you see:  The three "B"s: Blog, get Better, write Book).

I didn't think two years later, I would still be in the same boat as when I began, and still no closer to a diagnosis than I was when I started. That's depressing.

And galvanizing.

I'm  going to call my PCP (#2 if you are counting) on Monday and get in his face.  

I'm Still Waiting

I went to see doctor #30 in September and I didn't hear back in over a month. I was seriously starting to wonder what was going on with this guy. It turns out the doctor got sick, needed surgery and was out for a few weeks. He assured me he is All Better Now.  I'm happy for him. However in the meantime, I am nowhere near better and thoroughly sick of feeling horrible all the time.  I suppose there isn't much you can do if your very highly specialized doctor is sick, except wait until he is better and hope he doesn't die.

So in case you haven't guessed, we finally spoke last week. None of my labs were surprising, according to #30. My Epstein Barr titers are still very high, as are markers for Parvovirus.  He didn't test me for the new CFS virus that everyone has been talking about recently. Nor did he test me for porphyria, which he had specifically said he would do.  I had that abnormal result months ago and no-one is willing to follow up on it.

*sigh*

So #30 seems convinced I have CFS. He said he is getting together with a expert on MR Spectroscopy  on Monday -today actually, to talk about new imaging techniques for the brains of people like me.  I am to call him tomorrow and talk about ...something.  I'm not sure what. I go the impression that they were thinking of putting together a study, but I'm not sure. I'm in two minds about a study.  The last one in which I participated ended up with me getting unnecessary and experimental surgery and being charged for it.

But it also looks like this imaging; -although definitely interesting-  is considered experimental (but non-invasive) and therefore not covered by insurance.

And I'm poor.

AND there is still the whole having-to-trek-into-the-city-three-times-per-week thing which has not been resolved.

Maybe we'll get it all sorted out tomorrow. 

But I'm not holding my breath.

Stay tuned.

An Open Letter to Martin J. Wygod, Head of WebMD

Dear Mr. Wygod.

Sorry to take you away from your racehorses, but I tried to go through normal WebMD channels and my e-mails have remained unanswered.  Then I tried to find the CEO of WebMD, but there is none. Nor is there a head of advertising or public relations. Therefore I went to the holding company, HLTH Inc, and I could find no-one there who seemed to have a descriptive title ("member of the board of directors" doesn't really cover it). And so I decided in desperation, to address this to you. You are after all, the acting CEO and Chairman of the Board of Directors, so the buck stops with you.

It's a straightforward question:

Why does WebMD allow filthy scammers to advertise on the site?

What do you mean you don't and it's against your advertising policy?   You DO and  -maybe you don't know this, because maybe it happened in the lower management echelons, but your advertising policy is specifically designed to allow it to happen.  There is a humungous loop hole built right in. So I know HOW you have filthy scammers advertising on WebMD  (and I will explain how later for the benefit my other readers who may not have noticed).  But please, Mr Wygood,  tell me WHY it happens?  Do you need the money so badly?  Does WebMD get so much money from Yahoo for each "click" a scammer receives through this loophole in policy, that the company would fold without it?

Do you make so much money from supporting scammers that you are willing to risk the reputation of WebMD? Because -trust me, that is what you are doing.  All those editors and reviewers. All the medical boards and MDs and other people who work so hard to put out good and accurate content are made to look like idiots because the first link in a search will go to a scam site selling "miracle cures" for serious and fatal illnesses such as Multiple Systems Atrophy.  All in total violation of your very excellent advertising policy,  which prohibits such practices and which has as a closing statement, the following line

No Advertising will be allowed on the WebMD Network that could injure the good name or reputation of WebMD or the WebMD Site.

Um. You have this, this, this, this and this company directly advertising on WebMD, tucked right in there under the logo so that lovely sentiment is a FAIL.

You see,  There is a little paragraph higher up in the advertising policy that reads like this (excerpt)

"...As described in the "Ads by Yahoo" hyper link in the Ads by Yahoo section on our Search pages, these "Ads by Yahoo" are listings that have been purchased by companies that want to have links to their sites appear adjacent to search results in response to specific terms. WebMD may receive payment from Yahoo in connection with displaying the sponsored link results..."

Sooo. "Ads by Yahoo" is a separate deal, not covered by the advertising policy that prohibits miracle cures or false claims and a bunch of other stuff the scammers do.  

Here is the "Ads By Yahoo" policy... -actually it's more of a disclaimer:

"Ads by Yahoo!" are paid advertisements. These advertisements have been purchased by companies that want to have links to their sites appear in WebMD’s search results when you search on specific words or phrases on WebMD. These advertisements are administered, sorted, and maintained by Yahoo! and are displayed on the WebMD site. WebMD may receive payment from Yahoo! when you click on any of these advertisement links. The advertisements have not been reviewed for accuracy, objectivity, or balance by the physicians or editorial staff at WebMD and are not endorsed by either WebMD or Yahoo!

So in theory, I could pay to advertise kiddie porn on WebMD (not that I would) using "Ads By Yahoo", and neither WebMD  nor Yahoo would do a darn thing.  -OK maybe Kiddie porn is taking it too far because that is overtly, rather than covertly illegal. But I could claim a bogus herbal remedy for ...say Motor Neuron Disease (hello, ALS) that gives "results within Days" and that would be allowed.  You think not? Well, here is Exhibit A:

   

 The three circled sites are all scams.

The bottom one; that 'results within days' one that I mentioned?  Well, that particular advertisement is from Healing Plants Ltd, a scam operation that was outed before here on OSM.  Healing Plants have both direct and indirect advertisements on WebMD. The direct version is seen as an example above (they have around 60 bogus products for different diseases, and yes. Several more of them are on WebMD). The indirect ones are in the form of bogus comparison sites that point people to Healing Plants or to two or three other -even worse- "'guaranteed treatments";  some of which contain strychnine, mercury, arsenic or ground-up hairballs.

...all available a few short clicks away from WebMD.  Are you proud to see your life's work exploited so?

Another thing I have found -a little flaw in your site design, is that "Ads by Yahoo!" has a smarter matching engine than you. So if you mistype something, you get no WebMD results, but their ads are all there, nicely listed. Most people will probably just click on the nearest ad, cutting out WebMD altogether.

 
(As you can see here: four out of the six "Ads by Yahoo!" results are scams. Man-problems are very popular with the scammers)

Mr. Wygod, I have demonstrated using  your own text and screenshots that WebMD supports scammers and is paid to do so.  I have to ask you out straight:  Is this policy deliberate or an oversight?  I can't help but think it is deliberate, as the policy was so carefully structured to protect the Yahoo stream; -which is the one on which all the scammers enter WebMD- from your rigid advertising policy. And yet there they are, plain as day, looking for all the world to the casual observer (which most are) as if they are legitimate and endorsed by you.

Now I have to ask, did you know about this policy?  I can't believe you did. I can't believe you would allow that to happen. Not because I think you are so wonderful or anything -I don't know you at all (except for what I have read here), but because I think you are a good businessman, and a policy like that on a site like WebMD is simply bad business. It is undermining the entire brand for a series of "clicks" which are probably worth a fraction of a penny apiece.  And I know WebMD doesn't get most of its revenue from advertising, anyway. So to  jeopardize the entire franchise for the sake of  pennies is just dumb.

So this is the situation you have on your hands right now: WebMD is supporting scammers to the following effect:

• It looks like WebMD is endorsing these scam sites and products (and several of my readers who were fooled, actually said it was because the referral site was a legitimate one, such as yours)
• It allows these criminals to make money off of sick and desperate people on the back of (and to the detriment of) WebMD's reputation.
• Some of the products are harmful, so some people may be hurt by them, when they came to WebMD for help. Theoretically, -despite all your disclaimers, WebMD could be open to a lawsuit if this happened.

I am urging you to please put a process in place that performs better due diligence on the type of companies advertising on WebMD through "Ads by Yahoo!" and similar feeds.  I can provide a pretty comprehensive list of the scammers I know about (I am sure there are plenty that I have missed). Actually, the lists are here on this site,  under the "scams" section, but I can provide it in a better format -in any format you like.

I don't expect a direct answer from you. I didn't get one when I went to customer service, despite the friendly little box that said they would get back to me in two business days, so I know you won't respond. But even if you don't respond you will be responding: Your response will show in the WebMD site. I predict that you will do either one of the following

1. Nothing
2.  Remove all the scam ads
3. Leave the "Ads by Yahoo!" feed untouched, but with a more visible disclaimer thereon.

I hope  you  do the right thing and choose Option #2; -but I have to tell you (and you can color me cynical), my money is on #3.

BTW: If you need help identifying the scammers, I was serious in my offer to help.  My e-mail is linked on the top left-hand corner of this site.

Sincerely

One Sick Mother

Gardasil, The First Frankenvaccine

A friend, a young lady of college age,  recently posted a link to this video on her Facebook page.  It is the story of Gabrielle Swank, who has become very ill after receiving her third Gardasil vaccination.  Aside from the obvious impact such a story would have on anyone; two particular aspects of it struck me very hard:

1. Many Of Gabrielle's symptoms are very similar to mine; although hers are  more severe and sudden in onset.  I checked out some other stories and a similar list of symptoms emerges.  Hmmmm.
2. My daughter, Grace is nine years old. Very soon, I will face the Gardasil decision on her behalf. (Ugh)

 

So I decided to investigate Gardasil. Like you do. And to share my findings with you.  Because there is a lot here and it is interesting, while at the same time; kind of scary:

The first thing I found out is this: Gardasil is the very first of a new breed of vaccine, which is manufactured by a completely different process than traditional vaccines have been.  There are two new vaccines in a similar vein racing through the FDA as we speak: Cervarix, by GSK, another HPV vaccine and a direct competitor of Gardasil, and a new H1N1 "swine flu" vaccine by Novavax.

Hello, Big Red flag!

Traditional vaccines are made using a live virus, which you then put into the embryo of a developing hen's egg. You leave it for three days for the embryo to develop  some more, replicating furiously and making new virus as it goes. Then you crack the egg,  extract the virus, kill or disable it so it won't cause the actual disease, clean off the bits of dead chick, and voila!  One single vaccine dose!  So you can't make a vaccine without breaking some eggs. (idle thought: Do vegans get vaccinated?  Hmmmm.)

Here is a video explaining the process.

There are several problems with this method: It is slow, labor intensive, expensive and is very dependent on the supply of chickens/eggs.  Apparently they prefer to use young hens in their first laying season, then they "sacrifice" them before the next virus season, presumably rearing a batch of their offspring as a replacement. ('nother idle thought: You know, reading all this, I wondered how they would make an avian flu vaccine? What if the flock got infected with the bird flu virus? ...Or would that be a good thing, and save the trouble of introducing the virus to the eggs artificially?).

The Gardisil vaccine is made using a brand new process -long overdue-  using something called VLPs, which stands for virus-like particles.   I know, right:   WTF is a virus-like particle?  Well it is a fancy,  state-of-the art piece of genetic engineering.

Best as I can understand; it works like this (this is my over-simplified and somewhat over-dramatized version, but it is not entirely inaccurate):

You take a virus, remove it's brains, and then put it in a little bath of yeast and nutrients. The virus will reconstitute itself into something mute that looks and walks and like a virus, but isn't technically a virus anymore. Therefore the name "Virus-Like particle".  

 

I prefer to think of it as a Frankenvirus.  

 

With the brains removed, the Frankenvirus  cannot cause that specific illness,
but it can still reproduce  (similar to  many man I know, no brains, but ready to reproduce with anybody not fast enough to get away)!  And so it does just that, merrily making more Frankenviruses without the lab needing to use any hen's eggs at all (and I bet all the vegans reading this are heaving a HUGE sigh of relief and queuing up to get Fraknenvirus injections...).

Because VLPs -or Frankenviruses as I now prefer to call them (it is less cold) LOOK very similar on the outside, the human body reacts to them as it would to a regular virus, generating antibodies and therefore immunity to the original virus. Apparently the process can be further tweaked, adding bells and whistles in the form of protein coatings that may trigger different immune responses in the "host" -which is the drug company's preferred term for "person" in this scenario (it is more cold).

Frankenvaccines are believed to be safer than traditional live or killed vaccines because there is no way they can inadvertently cause the illness for which they were designed. This all sounds very well and good.

But what about causing NEW illnesses?  Did anyone think to check that one out?  -Before Gardasil went into mass production on our next generation of mothers, I mean?

Yes, there were clinical trials, but this is brand new technology. There have been NO long-term trials -intended to be run "post-marketing" (i.e. we'll inject it into all of your little girls and let's see what happens!).  I wonder how many parents were informed that the Gardisil vaccine that was being injected into their daughters was the very first product in a brand new generation of vaccine technology? Because that is information I would want to know, and I think I have a right to know it before I am guilted into making a snap decision in the pediatrician's office

 As a former software person, I know that  "version 1" of any product is usually loaded with bugs (pun intended). Every person in my business knows that you have to get to at least version 3 before they get most of the glitches out of the software. So generally, we install our new code on our colleague's computers befire our own (Really. it's mean, but we make an excuse and we do it).

The big th 
ing about new software code (and presumably new vaccines and Frankenviruses), is that they may work just fine in the lab, but you never know what kind of conditions they may encounter out in the real world. W hen you release them into the world, there can be all sorts of actions, reactions and interactions with other entities and other ...stuff that you could not possibly have predicted under lab conditions.

...not to mention the long-term effects, which have not been studied at all.  

 

 

 

Eventually, we iron out all the little glitches and we release a cleaned-up and safe product in version two or three.

 

 

 

 

Did the FDA, the doctors or ANYONE warn patients or parents that Gardasil is a 'version 1.0' -not just of a vaccine, but of a whole new technology and  processing methodology?  If anyone has been offered this vaccine, I would appreciate them letting me know if they were told this (thanks).

 

OK now to completely change the subject back to me for just a second.

I have been told I might have Chronic Fatigue Syndrome (CFS).  This was based on the fact that my system contains an abnormal number of antibodies against a virus. In my case, it is Epstein-Barr, but other cases of CFS have been linked to the HPV viruses.  I was very struck by the fact -as I mentioned earlier, that many of the people who got sick after the Gardasil shot had very similar symptoms to mine. Scarily similar.

And this got me thinking -funnily enough (in light of earlier descriptions)- of chickens and eggs:  Namely can CFS or a similar illness be caused by an immune response, rather than a viral infection?  In other words, could a Frankenvirus, which cannot cause illness in itself, cause a different kind of illness by triggering an unexpected immune response in some individuals?

Good question, no?  I wonder if anyone with any actual say in these matters has asked it?

..and I also wonder if IVIG or similar might help some of those girls and women who have had their lives destroyed by Gardasil?

Another big question surrounding Gardasil and other FrankenVaccines, -quite apart from the Frankenviruses therein, are the other additives, called  adjuvants, which are  chemicals added to the vaccine, supposedly to make the virus more effective.  The main one used in Gardasil is approximately 225 mcg of aluminum (as Amorphous Aluminum Hydroxyphosphate Sulfate adjuvant).  There have been many questions raised in the medical community, asking if this additive is really necessary?  The Frankenvirus has been shown to work perfectly fine without it.

Gardasil is not the only HPV Frankenvaccine out there. Cervarix, which is GlaxoSmithKline's (GSK) version, has been approved for use in the UK and parts of Europe. Cervarix only contains two Frankenviruses, (as opposed to Gardasil's four) but  GSK have been bragging hugely about their adjuvant,  known as AS04, saying it provoked an even better (i.e. stronger) immune response than Merck's boring old aluminum salt.

'scuse me, but is that a good thing?  Just how much immune response can a body take before it goes into overdrive or starts to shut down?

The one death which had  initially  been linked to  Cevarix, now turns out not to have been linked at all. The 14yo English girl who died had undiagnosed cancer, which had become quite widespread. OK fair enough, but I still think the shot thing was probably a bit more than a coincidence. What else had changed with her?

I don't want to create mass panic here.  I know millions of girls and women have received the Gardasil shot and been fine.

So far. 

But is their long-term health being monitored?  How many have gone on to have babies?  How ha  v  e those babies been?  Really. Enquiring minds want to know: 

What are the long-term effects of Frankenvaccines?

There have been thousands of serious adverse events reported and several deaths have been attrib  uted to Gardasil. I don't think the FDA is looking at this as anything more than just another vaccine. I don't think the FDA has said to itself (as I would if I were in charge) "This is the very first in a brand new generation of vaccine technology and processes. We think we'll follow it up more closely than if it were a traditional vaccine".  No.  The FDA, the CDC, the AMA and everyone looking at the cost of cervical cancer treatment and are pushing hard for us to have our little girls injected with this stuff -which -let's face it- is to prevent against a sexually transmitted disease (it is NOT a cervical cancer vaccine. It is a HPV vaccine. Yes, HPV can and does cause cervical cancers, but HPV is transmitted sexually. How many NINE YEAR OLD GIRLS -other than the abused- are sexually active?).

Several things need to change : The FDA needs to instigate some kind of process to more actively monitor and follow up on brand new technology such as genetically engineered viruses and proprietary adjuvants. Currently, they only audit every two years. I would be more comfortable with every six months in cases like these.   Sorry if that's a lot of extra work on an already-stretched agency, but the public needs to be protected.

But instead, the FDA is pushing through more and more Frankenvaccines. Cevarix is set to be approved any day now and a new H1N1 Frankenvaccine, developed by Novavax in Maryland, is being watched with interest. They were the first to put a swine flu Frankenvirus together after the CDC released the sequence, taking less than a month to do it. This is impressive and could change the whole face of the industry.

But at what potential human cost?

Frankenvaccines  have only been in production for three years. They have NOT BEEN FULLY TESTED. The pharmacutical industry is forging ahead nonetheless. I did a little search on VLP patents which are in development or approved:

Over 3,800 of them, including at least one for HIV.

None of this is bad in itself. it would be great to have a safe and effective vaccine against HIV.   However,  I am reminded of the whole Thimerosal thing in the 90s, where vaccines were tested and approved individually, with no thought given to the overall load of virus and chemicals injected into tiny babies. This meant that many babies were injected with mercury at many times the adult recommended levels, because most of the vaccines contained it and no-one had done the math on the cumulative levels (It sounds unbelievable, but it is true. This is the kind of shit the FDA routinely overlooks).

Who is studying potential Frankenvaccine cumulative load and interactions with other Frankenvaccines, I wonder...?

I remember the 90s and it seems to me the whole Frankenvaccine issue - as it is currently playing out, has a much greater potential for interactions and adverse long-term effects than anyone in the pharmaceutical companies or the agencies that are supposed to regulate them are letting on.

So I won't be giving my kids a Frankenvaccine anytime soon.  -especially in light of my own health problems. I already have some of the reported side-effects of Gardasil already, possibly due to my immune response to a different (non franken-) virus. 

What if whatever I have is genetic?

Therefore, Grace will be "one less" person getting Gardasil.

 

Other People's Shoes

I think generally,  people understand that most people with an Autistic Spectrum Disorder (ASD) cannot (easily) put themselves in "another person's shoes". That is, they have a hard time understanding what that other person may be feeling or thinking and how things may be for that person. Many cannot even conceive of "walking a mile in your shoes".

 

They are stuck in their own shoes

My son Joe, who is (high functioning) Autistic, would probably pass by someone who had collapsed on the street, thinking that person maybe chose to lay down right then and there; and if that is the case, who is he to say anything?  An Autie such as Joe doesn't tend to factor in things like "normal behaviour" or "likelihood" into these scenarios, because to him, NTs are all so weird anyway. There is no telling what we might do! So who is he to question?  However, if I explained to Joe that the person might be in trouble or distress, he would move Heaven and Earth to help them if he could.

Perspective is a funny thing.

Of course, most NT people in the same scenario would instantly figure there is something wrong -even if the person had chosen to lay down right there! (OK the odds are that they didn't. But I'm just saying...)

Most of us non-autistic people, think we have good... whateveritis you want to call it: Theory of mind, empathy, perspective-taking. Most of us think we can place ourselves in another person's shoes and understand where they are coming from.

Sometimes we can. Sometimes we can't.

I have been thinking about this a lot recently. One of the comments on the piece I wrote about Caster Semenya was written by a man trapped in a woman's body. I tried to imagine what that might be like (and I tried to imagine if I were trapped in a man's body).  I couldn't do it. 

I can only imagine my body: My "shoes".

I didn't realize I was quite so unimaginative until now. Now, I know that some experiences cannot be imagined or described, but I thought I could manage simple enough ones like "male" and "female". 

But I can't because they are not that simple at all. At least not for humans.

I remember years ago, reading an interview with Stevie Wonder and he; although born blind, was saying that he does "see" things in his head. Of course he cannot describe them to anyone, having no knowledge of a sighted person's concept of (say) "color"; indeed, having no sight references at all. So we cannot know what he sees. I do wonder if he shares it, wittingly or unwittingly? I wonder if his vision colors (pun intended) his music?

Interesting, no?

Recently, I watched the season premier of Season 6 of "So You Think You Can Dance", which is one of my favorite shows. Allison Becker, A deaf dancer auditioned in Phoenix. She was great.  What got me was that the judges were so flabbergasted that she was great. They danced (pun intended) around the core issue until Mia Michaels finally came out and said in a somewhat roundabout way what everybody else was thinking (I'm paraphrasing here): 

"Why do you (how can you) dance when you can't hear the music?"

The answer was simple.

"I hear it differently"

Then Nigel was waffling on about wanting to see how she would do in choreography and again she just said

"I'll be great"

And she was. She killed the choreography. Here is a link to the video.

(And although somewhat off topic, I have to give a shout-out to the same-sex ballroom couple, whose video is here.)

 

There are some shoes we cannot occupy. Some scenarios we cannot understand, no matter how we try. We cannot understand how a deaf woman hears or a blind man sees. We cannot fully get what it is like to have Autism, ADHD, Dyxlexia or OCD. We can try and understand it on an intellectual level, but we cannot truly get it.

In a funny way, I thnk Joe has an advantage in this over me. He KNOWS that he doesn't get other people. Therefore instead of trying to understand them, he usually just accepts them. He has no problem at all with the concept of a deaf dancer. She's deaf, she dances: So what?

Whereas I, who consider myself an empathetic person, find myself trying to understand instead of simply accepting. And then I realized that I have been guilty of "Murakab"  in my attempt to teach Joe about putting yourself in other people's shoes. I had assumed that I could always do it, and that one always should do it. I didn't fully realize that there are times when one CAN'T do it. I didn't fully understand that: Hence murakab, which means 'complex ignorance"; I didn't know that I didn't know (as opposed to simple ignorance, where you know you don't know).

I have now realized that there are times when Joe's approach is better than mine. There are times when I cannot -simply CANNOT place myself in another person's shoes. That does not mean their experience is invalid (not that I ever thought it was). It just means that instead of trying to project myself onto them, I will choose to accept them on blind faith, like Joe does.  That isn't easy for me.

Having just said that, however,  if I ever do see a person collapsed on the street, I will not assume they chose to lie down and take a nap.

(All the art in this piece is by Renee Magritte, 1898-1967)

Where Was I? ...Oh Yes: #30

So, in my unrelenting quest to find a diagnosis and treatment for my disabling medical condition, I took myself off to see doctor #30 last Wednesday.  This guy is a metabolic endocrinologist and works mainly in pediatrics. I found him through a buddy of Joe's, interestingly enough (long story). I had called  #30's office, hoping to see him, or at least to get a recommendation for an adult version of him -if you know what I mean (because he is an adult, obviously).  I mentioned before that he had called and after a long conversation, agreed to take my case.  Hurray!  Most doctors who see me coming start crying for their Mommy.

So I packed the kids off to school and undertook the 2 hour walking-and-public-transport commute to the hospital where #30 practices, which is big and internationally recognized. And far away.

What with public transport, hospital red tape and my appalling sense of direction, I was an hour late. #30 is a very kindly mature gentleman and he agreed to see me anyway. He spent a lot of time with me. He had copies of all the stuff I had faxed to him, but no printouts of the documents I had e-mailed. Now, I usually bring copies of all correspondence, but my printer had chosen that morning to run out of ink, and had crapped out right before the most important document: the one depicting the timeline and sequence of events leading up to my first fit (ugh).

Nonetheless, #30 took a detailed history, although he concentrated more on stuff before I was sick than when I was sick -we kept getting sidetracked and I had a few minor seizures, which didn't help with anyone's concentration. So with the afternoon well advanced and no-one fed, he finally sat back and told me what he thought.

"I think you have a variant of Chronic Fatigue Syndrome.."

(whaa...?)

"...and none of the treatments for it work..."  (I nodded, speechless. It is known there is nothing you can do for CFS) 

"...except ours..."

He went on to explain that there are some variants of CFS that present with right-sided weakness, facial droop, seizures and pretty much all of the symptoms I had presented with (except the drug reactions). He invited me to Google it.

I did, of course and I found this piece, which is excerpted below. I have bolded the part that I think pertains to my symptoms:

Research on subgroups of CFS is underway, but is still in very early stages. To date, however, clinical experience and limited data suggest that subgroups of CFS may include the following:

• Post-ADD CFS: Young adults who had attention-deficit disorder as children, who have flipped from hyperactivity to fatigue. Such patients have severe hypersomnolence (sleeping too much, sleeping any time or anywhere). Such patients respond well to psychostimulants.
• Neurological CFS: Patients have more severe cognitive symptoms than patients in the other groups, including trouble thinking, remembering, and paying attention. While cognitive difficulties affect the vast majority of patients with CFS, this group experiences significantly more severe symptoms. Visual-spatial problems are common as are sensitivities to light and noise. Other symptoms in this group include seizure-like episodes and other abnormalities suggestive of temporal lobe seizures. Patients in this group tend to have severe sleep problems in which they never achieve stages 3 or 4 of the sleep cycle, awaken unrefreshed, and respond well to sleep-improving drugs.
• Post-viral CFS versus gradual-onset CFS: According to some experts, an estimated 70% of patients are healthy until a particular illness strikes at a definite time. In gradual-onset patients, however, symptoms develop gradually, and patients are unable to recall any specific viral or infectious illness that initiated the process.

Further delving into my medical records, which I had brought with me, uncovered some unusually high titers for Epstein Barr (AKA infectious mononeucleosis AKA Glandular fever), which #26 had uncovered almost two years ago (but done nothing). #30 said that many people with CFS have antibody profiles that look like mine.

Then #30 went on to explain that their treatment for CFS is a structured regimen of exercise therapy and nutritional support, which would have to be undertaken diligently for several weeks before any results would start to show.

Now I have no problem starting a monitored exercise program. I would love to lose a bit of weight and my response to exercise has been a bit ...um ...unpredictable in the past. I was fired from Physical Therapy for having too many seizures in their office.  But I asked the Big Question anyway (already knowing the answer):

"Could I do this program near my home, or does it have to be in the hospital?"

"It has to be here, in the hospital"

Fuck. I was afraid he would say that.

Here is my problem: Himself and myself are (legal) immigrants with two special-needs kids. We have no family or close friends nearby who can help us. The hospital is two hours away, only accessible via public transport and there is no-one who can accompany me on these trips. Therefore, if I go to the hospital, do my thing and then have a massive seizure on the NYC subway going home (or there!), I am basically screwed. -An epileptic lady I once struck up a conversation with on the subway said that if you have a fit on the subway, they call 911 on on your mobile phone and then take off with all your jewelry and belongings. At least they call 911!

Even supposing I don't have a fit: Grace gets on her bus at 9am and Joe gets off his bus at 3:10pm:

Allow an optimistic two hours to get to the hospital: 11:am

Allow 40 minutes for hanging around, getting registered and prepared etc: 11:40am

Allow 40 minutes to do the exercise program: 12:20 am

One hour (at least) cool-down and monitoring: 1:20pm

Two hours to get home and discover a hysterical Joe on the doorstep: 3:20pm

...and all this is assuming no problems or delays. There is no way I can do it.

Himself has been good about working from home on days when I have to schlep into the city for a doctor's appointment, but he can't do it three days a week for three months. And there is the other question:  What if I am in the hospital, and I get a call from the school, that Grace has dislocated a hip, or Joe has had a meltdown?  I will be two hours away and Himself -if he is at work- will be over an hour away in a different direction. There is on-one locally who would be able to deal with either of them under those or similar conditions.

That won't do.

In a way, I am stressing out prematurely about this. I had seven or eight vials of blood taken yesterday for #30 to review. Maybe he will find something not indicative of CFS therein and will change his treatment plan?

I guess we will wait and see....