One Sick Mother

Responsibility

I always thought that taking responsibility was a learned skill. I didn't think it was something people did automatically and without life lessons. Or at least not without a lot of nagging.  Mostly from their mom. I have had to remind my kids many many times that X, Y or Z didn't "make them do it" that "doing it" was their action alone and  that is why they were the one being punished.

However, sometimes Joe surprises me. Sometimes he will come right our and accept responsibility for something he has done. He 'confesses'. I sometimes wonder if he is being super-smart and he knows the best way to defuse the mom-bomb is to disarm her first by admitting to the mayhem before she discovers it for herself. But although I would love to think that, I honestly don't reckon his social skills are up to that level.

I think he just can't help himself.  That he just blurts it out. Maybe the guilt of keeping a secret is too much for him?  Or maybe he can't stand the suspense involved in waiting for his "crime" to be discovered?  I don't fully understand the mechanics of this process with Joe, but I do know that he often takes responsibility for stuff; and way more than he should. He has apologized when I slept in and made him late for school.  "I'm sorry Mom. I should have woken up."

"But I'm the one with the alarm clock!"

My notion of reresponsibility and what it entails has been challenged to the extreme in the past few weeks by a small electronic device:

Joe's cellphone.

It became apparent after a few weeks of middle school that if we wanted to prolong my life, we would need to get Joe a cellphone. The point was that he could contact me if he got lost (which had happened several times). I decided to go with a pay-as-you go unit, so he had minute counts and other stuff to monitor, to remind him to be responsible and not go nuts texting everyone in the directory. This is quite an affluent town, and a lot of kids have fancy hardware and unlimited plans. However, I wanted to teach him the value of a minute, if not a dollar.  You know, to be responsible.  And we are not affluent, anyway.

Joe liked the phone, but not the responsibility of owning it.  (I didn't realize just how much responsibility owning a cellphone entails.)  Although I had assured him that the phone is insured, and no real harm will be done if anything happens to it, he is ridiculously protective of it. He keeps it switched off to preserve minutes and battery life, despite my telling him several times that this defeats a lot of the purpose of having it, as I cannot call him if I am running late, because then we have conversations like this:

Joe: "Mom, where are you? I've been waiting..."

Me: "You only just turned your phone on now so you could call me, right?

Joe: "yes"

Me: "Well, I have been trying to call you for the past 10 minutes to tell you I am stuck in traffic and to catch a ride with Mrs S."

Joe: "But Mrs S. left already..."

Me: ...(who knows that Mrs S only just left and am therefore too busy biting the inside of my cheek to utter anything intelligible, much less printable)

Me: (takes a deep breath)

Me: "I'm on my way. DON'T turn your phone off after you hang up." (because if I forget to tell him that, he will turn it off)

Suffice to say, we have had a few Issues around the damn phone. It is about the responsibility of owning a phone. He hates having to remember to take it places, not lose it, turn it on, keep it charged, track his minutes, not get it lost/broken and generally take care of it.  It is a lot of stress for him.

This leads to me trying to pro-actively anticipate everything that might go wrong the the fecking thing and try to prepare him for it.

On the night we had the biggest 'phone' Issue (to date), it occurred to me that I had forgotten to show Joe how to put the battery back in. We have all dropped our phones and had the battery go flying across the room/ restaurant/ airport/ train station, right?  I figured (rightly) that if this happened to Joe he would freak out.

So I started to take out the battery.

Joe: "what are you doing, mom?"

Me: "I need to show you something"

Joe: "It looks like you are taking my phone apart"

Me: "well actually, I'm trying to"

Joe got very upset and walked into the adjoining room, out of my field of vision. I continued to remove the battery, struggling a little with bad fingers and a tight casing. When I finally got it open, I looked over my shoulder for Joe,  only to see him standing right behind me with a heavy musical toy held aloft in two hands, about to smash it down hard.

On my head.

It is really hard to explain the emotions you feel when you realize your beloved firstborn child was about to smash your head in over a mobile phone.  I was absolutely crushed.  I wanted to scream my head off and smash the fuckin phone against the wall.  But I didn't.  I got cold and stern and told him to Put. That. Down. Right. Now.  And he was in deep trouble.  Then I told him to finish his homework while I went into another room to cry and try and figure out what I had done that was so wrong.

I'm still not 100% sure. I know that in Joe's mind, the phone was considered the most important thing at that time. There were Rules about the phone, first of which was don't lose or destroy it. I had put the fear of God into him about keeping it safe. When he saw me taking it apart, he didn't know what else to do, but attack me to "save" it. (no it didn't occur to him to ASK me why I was doing what I was doing. He is after all, autistic).

You can fool most of the people most of the time.

You can even fool your mother part of the time

But underneath it all you are still Autistic.

I'm so lucky he hesitated. I was home alone with the kids at the time. He probably would have knocked me out (at least) if he had followed through with his plan.

Later, after we had both calmed down, and I had demonstrated how to replace the battery ("Ohhhh!"), I spoke with Joe about the incident, starting with the question that was foremost in my mind:

"Were you really going to smash that thing down on my head, or was it just a threat?"

"No. I was really going to smash in down"

(oh.)

(sometimes Aspie honesty isn't all it's cracked up to be)

I then tried to explain to him that mobile phones are ten a penny, but his mother only has one head, which is unique and irreplaceable, but he didn't get it. He kept saying stuff like "But you told me to protect the phone. I didn't know what else to do!"  Then I gently explained that he could have ASKED me what I was doing, instead of jumping to conclusions which could have led to pretty serious consequences.

"Oh." 

(my thoughts exactly)

We talked some more, but the upshot is this: Joe still doesn't fully get where he was wrong. He is hyper-responsible in some areas, but oblivious in others. He doesn't have the ability (yet) to prioritize life over possessions, or that it is sometimes appropriate to break Rules.  

I am hoping he will gain these skills in time, and without anyone getting seriously hurt.

ahhhh... Parenting is such fun!

Power

A few months ago, a transformer blew on our street, setting fire to a tree right outside our house.  Since then, our street has lost power four times. Just our street.  As we are the first house on the street, we can clearly see that the houses behind us and on the cross-street right next to us are all merrily lit.  This is frustrating.

The first two times the power failed wasn't a problem at all. It happened late at night, and power was restored by morning. The kids didn't even know it had happened. Himself and myself, having been raised in Western Europe in the 70s, and having experienced the great Northeastern Blackout of 2003, are reasonably well prepared for short duration power cuts and weren't phased at all. 

Then a couple of weeks ago, the family arrived home after an evening at the movies to discover the power had failed again. The adults immediately went to the locations where flashlights and candles are kept, but the kids were completely freaked out.  Particularly Joe. Aspies don't like change, and an unexpected change to his safe place definitely unnerved him.

Luckily there was a charged laptop available, as so we all sat down with a movie to approximate normality for awhile.  I didn't realize how upset Joe was by the whole deal until he asked to sleep in our bed. He NEVER asks to do that. Joe loves his bed and his personal space.  So the kids and I slept in the big bed that night, while poor Himself, dispossessed,  slept in Joe's room.  The power was restored a few hours later, and nothing more was said, although each kids quietly received an extra flashlight to keep by their beds.

On Friday evening after dark, the kids and I were alone in the house and the power went out again. I called out to them to stay put, got the flashlight and enlisted their help in lighting the candles.  Himself came home shortly thereafter and wisely suggested a trip to the movies. After the movies, Himself, who was having good ideas that day, suggested we drop into Target and pick up some camping lanterns.  We got a few small lanterns and one big one. We also got a couple of glowstick/flashlights thingys for the kids. 

The lanterns were an inspired idea. Turns out Joe was freaked out as much by the naked flames of the candles as he was about the dark house, causing a lot of conflict (you blow out the candle to neutralize the threat of fire, it gets darker).  So he relaxed after we got the lanterns on and the candles off. He even announced that he wanted to sleep in his own bed.

I realized when I saw him wandering around on his tippytoes (he is a toe walker) with a lantern in one hand, a flashlight in the other and a glowstick around his neck, that his staying alone was probably a bad idea, but I said nothing.  As Grace and I were getting ready for bed he changed his mind:  "I think I am too scared to sleep in my own bed. Does it make me a chicken if I want to sleep in here after all?"  I said it didn't make him a chicken. It made him normal. And honest. So we all snuggled into the big bed, where I told them stories from my childhood and confessed that I liked power outages because I never got an opportunity like this otherwise.

Later, as I heard Grace's breathing become slow and peaceful in one ear, and Joe's slow and serious in the other, I thought back to his change of heart about sleeping in his own bed: I think he thought he had somehow failed by admitting he was scared, whereas I know it had been a kind-of breakthrough for him.

How can I explain to an eleven-year-old that knowing your needs and limitations is not weakness, but is a different kind of power?

Smell

Grace has been having trouble falling asleep recently.  She becomes scared of monsters and unnamed threats when left alone in her room. No amount of reassurances will allay her fears. She needs a different comfort. I have been lying with her to help her fall asleep, but this means either I fall asleep too, and wake up cold with a sore neck/back, or I lie there bored out of my mind, thinking of all the other stuff I could be doing. 

Even though I spend most of my weekdays alone, I like my time after the kids go to bed. I use it to watch some shows I have recorded, to knit, and to view any "Not Suitable for Work" (NSFW) material that might have been sent to my inbox. I have learned the hard way that NSFW means "Not suitable for Children".  I get twitchy when I miss my evening time.

The other option is to put Grace in the big bed, where I can at least spread out and/or read while I am staying with her. But Himself and I never sleep as well when Little Miss Pointy Elbows is in the bed.  

So last night, Grace -who always used to snuggle down happily in her own bed, was crying and apologizing that she was scared. I reassured her and told her there was no need to be sorry. Her fear -no matter how irrational- is real, and I although I do ask her to make an honest effort to self-comfort, if she can't do it the first time, I will stay with her.  But last night I had a TON of stuff to do and Grace was in my bed, not wanting to be left alone. "Can't you bring your work up here?" she asked. "I can't wash the dishes up here".  She laughed at that thought.

Then I had an idea. I took off the shirt I had been wearing, turned it inside-out and handed it to Grace.

"What does this smell like?"

She gave it a cautious sniff, then inhaled deeply.  "It smells like you!"  She cottoned on immediately and snuggled down with the shirt.

"I feel like you are holding me"  (I was sitting on the edge of the bed, not touching her.)

"Do you want to try staying alone for five minutes, and I will come and check on you?"

She was already visibly relaxing into the bed. She nodded.

I checked on her five minutes later. She was fast asleep.

WIN!

When I went to bed a couple of hours later, she was still cuddling the shirt.

They say that the sense of smell has the most connections to the emotions and to past associations. I guess that is true.

Tomorrow night, I am going to try her with the the shirt in her bed.

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 thing 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. When 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 have 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 attributed 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.

Only An Aspie... ;)

Joe returned home late yesterday, having stayed on at school for the Games club (he did warn me in advance that he was planning to do this).

Me: "So Joe, how was the games club?"

Joe: "I didn't go to the games club. It was too crowded. I went to Mathletes instead"

Me: (who would rather stick a fork in her eye than volunteer for Math): "So how was Mathletes?"

Joe: "It was fine."

Me: "Are you going to do it again next week?"

Joe: "Sure!"

His Grandad would be so proud...

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....

Resisting Urges

We've all had to resist urges in our lives: That urge to blurt out something funny but inappropriate (although I personally have probably failed to resist this urge more than I have succeeded. I blame ADHD). The urge to just drop everything and take a plane to somewhere sunny; the urge to push everyone out of the way and jump to the front of the line. The urge to tell your mother-in-law just where she can put her cat plates. The urge to beat your daughter's orthodontist to a bloody pulp with your cane.

Oh. You've never had that last one?  That must just be me. 

...yesterday.

As I mentioned before, Grace irretrievable lost her palate expander while we were in DC. I thought they would just make a new one from the old mold, but as several months have passed, they decided to re-cast her mouth and make a totally new one.

She went yesterday to have it fitted. She immediately complained that it hurt, so the orthodontist loosened it. She still said that it hurt, and they were having trouble getting it to fit. Finally, he asked her to point to where the problem lay? She pointed at the very top of her palate. The unit was too high and was digging painfully into the roof of her mouth. The guy basically said that he couldn't adjust that part, but she would "get used to it". I saw Grace's hands go to her eyes in a gesture that is characteristic for her: one in which she quite literally tries to hold back tears (I figure she read that expression in a book and this is her Aspie implementation). 

Time to get into mamabear mode:

"You know, I have seen her dislocate a hip and not cry. So if she says it hurts, she isn't being a drama queen. It hurts." Their attitude changed at once and the expander was removed.  The assistant said something like "That is good to know, because my daughter is the opposite and will cry at anything". And we had a little discussion about which was worse (we both agreed that "drama queen" is worse, although you usually can pick out a cry of real pain instantly).

In an attempt to troubleshoot (which used to be my profession), I asked the orthodontist to check if he had received the correct unit? I know these things are custom made. I wondered if maybe there had been some mixup and we had mistakenly gotten an expander that had been cast for someone else? He didn't check. He just shook his head and said it was the right one. OK maybe he had checked already (but he could have told me that). I mentioned that the expander did look much "taller" (and a completely different shape) than the old one, but as we didn't have the old one for comparison, it was just my word, which apparently accounted for very little

Then he got out the dental power tool and tried shaving some stuff off the top of the expander. But there was not much to work with, so it didn't help.  Finally he admitted defeat and said they would make a new one.

"So you are going to re-cast her mouth?"

"What (as if this was an alien concept)?"

"Well, I can't help but think if a new unit is made from the same mold, that unit will have the same problem, right?"  He looked confused as the young assistant nodded vigorously.

So they re-cast her mouth.

And afterwards I took her to the smoothie place to get an overpriced smoothie as a reward for not punching the orthodontist (though I didn't phrase it like that).

I had one too.

More Bus Drama

My regular readers may recall that last year, I had to petition the school district to make a new school bus stop nearer to my home. This is because my children and I all have Ehlers-Danlos Syndrome, and I was afraid that the walk to the old bus stop, which involved walking on a street without a sidewalk and crossing two streets, might be dangerous in icy weather. If you have EDS and you slip on ice, there is a very good chance you will dislocate at least one joint (and not be able to get off the ground unassisted).

So last year, I had a series of battles with the district and the doctor's office to get it all sorted out. You can read about (most of) that here and here.

Last week, around Wednesday or Thursday, I realized that I had not received the little yellow cards that tells me the bus route details. I was pretty sure Grace's would be the same as last year, but Joe starts middle school this year and the times/routes are definitely different.

So I called the district to find out the routes.  "Your daughter is being picked up at 8:56 am at the New Stop (i.e. right by the house).  Your son will be picked up at 7:38am at the Old Stop (i.e. up the street, in Potential Dislocation Land)"

"Um... why are the stops different for both kids when I provided medical documentation last year for them both, stating that they needed to be picked up closer to home?"

"No. the documentation you provided was only for your daughter."

"No. I'm, pretty sure it was for both (but could I find my copy of the letter right then?  No.)"

"Well, you'll need a doctor's letter for your son.  ...you need one every year anyway because medical conditions change" -This made no sense because they had accepted last year's letter for Grace, but I kept my mouth shut on that point. Instead I said.

"This is genetic. It won't change. He was born with it; he'll die with it. But OK. I'll get a doctor's letter."

I hung up.

"I will die with what, Mom?"  (Oops! I hadn't realized that Joe was right behind me!)

"Ehlers-Danlos Syndrome."

"Oh. OK"

The phone rang a few minutes later. It was the district. They had found the original doctor's letter, and I was right: both children were mentioned by name therein. They would change Joe's stop to pick up at the same location as Grace's. I have to say, of all the offices I deal with in the District, Transportation are probably the nicest.

Unfortunately, the bus company is a whole 'nother story.

So day one of Middle school: Joe and I were out at 7:30. I wasn't sure if the new stop would pick up before or after the 7:38 stop down the street, so we went out early in case it was before (Joe, bless his little heart, had been all prepared: packed, washed, brushed and shined since about 7:10).

We saw the bus arrive at middle of the street and then turn down our street, away from our house, stop for a microsecond at the 7:38 pickup point and then take off in the wrong direction, away from us. OK maybe that was a different route. We waited just in case.

It wasn't a different route.

At 7:45am, with Joe wigging out about being late on his first day of middle school, which would -in his mind- start some kind of chain reaction to Armageddon; I loaded both kids in the car (poor Grace had been hauled out of bed early and asked to get dressed -just in case)  and dropped Joe off on time.

That afternoon, I waited for Joe's bus, which is about an hour ahead of Grace's. No bus went by my house.  I called the bus company. 

"My son isn't home yet. School finished a hour ago and I'm worried"

The lady was breezily unconcerned. "Oh the second wave of buses is just leaving his school now. He is probably on the second wave."

She clearly doesn't know anyone with Asperger's Syndrome. NO WAY was Joe on the second wave! I tried to explain this to her, but she blew me off as an overanxious mom.

Fuck YEAH I was overanxious! My kid was MISSING!

I started going through the elementary school phone book, trying to think of other people who would be on the same route and would have Middle school-age kids to see if these people had received their kids home OK. But the only person I found wasn't picking up.  I was about to call the district when the door opened and Joe walked in, out of breath and sweating.

I turns out, he had been on the first wave bus (of course) and when the bus had breezed by our stop, he had stayed on, thinking maybe it would go around the block or something. It hadn't, and as he got farther and farther from our house, he realized they bus wasn't going to stop for him. So not knowing what to do (although I have pounded "tell an adult" into his brain -apparently pointlessly -since he could vocalize),  he got off several blocks from our home and he ran back to our house, afraid that he was somehow in trouble for the bus's failure to stop.

*sigh*. That kids takes too much responsibility on himself. Apparently this is common with Autistic Spectrum kids.

So I called the district, thinking maybe they hadn't sent the paperwork to the bus company. They had. The lady said. "I even put 'medical' next to it in big letters, so they would know".  I believe her.

So I figure the afternoon bus driver can't or won't read.

You know, I just wish these drivers and administrators really understood the impact this sort of nonsense has on special needs kids. It may be a line on a list or a simple clerical error to them, but to the kid, the perception is (rightly or wrongly) that it is HUGE and potentially life changing. 

And somehow all their own fault.

Or their mother's fault.

Or both.

Joe spent quite some time stressing about the bus situation last night. I reassured him as best I could and told him that I would work with the district and the bus company to fix things, but like last year, it might take a few days to get it right (and don't get me started on substitute drivers, but I didn't go there). Joe got it -probably better than most kids would. "you shouldn't have to do that, Mom"
"Yes I should. It's my job. And if I have to stay on the phone all day to fix this, I will."

I really hoped today would be better than yesterday. As I made his lunch at 7am this morning, I wished and hoped that it would be.

We went out again at 7:30; waited, and again, we watched the bus come to the middle of the street, then turn away from our house. This time I was ready with my trusty phone in hand. I called the bus company, while frantically motioning for Joe to NOT run down the street, to chase a rapidly diminishing bus.  The bus company put me on hold for several minutes. Then they told me "a bus will be there in a couple of minutes to pick him up." Not YOUR bus:  A bus.  So they had screwed up. Again.

Well, but this time it was past Joe's 7:45 cutoff for having a meltdown. I hung up and he was pacing and flapping, all the time talking about fish:

"...so you had the fish and you just didn't reel it in. And in the meantime, I am starving and Grace is starving and you just won't reel that fish in..."

"What do you mean, Joe"

"it's an expression."

"I get that, but I don't understand the expression. What's the fish? Is the bus the fish?"

"Yes. ...No. I don't know.... Look, it's just an EXPRESSION!"

Joe understands about expressions and figures of speech. For years I have been telling him to 'keep his hair on", to "hold his horses" and that he is "on thin ice".  He understands this stuff a lot better than many Auties/Aspies his age.  But this making up of expressions is new to me and this particular autistic expression of speech is completely opaque to me; -to both of us, apparently. Maybe

he knows what he means somewhere in his brain. But I think he just got several metaphors mixed and I somehow ended up being the bad guy with a fishing rod and starving children.

And he managed to make it sound like that had been my sole ambition in life.

Eventually, an empty school bus arrived and stopped on the main road at the side of our house. I asked the driver: "Is this the spot where you will normally stop? Because the elementary school bus usually pulls around the corner out of the traffic?" The driver shrugged.

I don't know. I'm just filling in for the regular guy, who missed this stop." (Oh well, at least he was honest).

I walked back into the house at 8am, mentally exhausted.

I am now wondering what will happen this afternoon?  Where will Joe end up?

And I am also seriously considering the statement he made last night. "If I had a cellphone, I could have called you when the bus didn't stop. Maybe I need a cellphone, Mom"

Maybe he does.

I wonder if I could charge the cost to the useless bus company?

Something Smells Fishy

I was rummaging through the medicine cupboard (outgrew a 'cabinet' long ago!) and a pack of Zicam nasal swabs fell down and hit me on the head.

 

Oops! thought I to meself. I forgot this was here. I need to throw it out.

But before I did, I decided to check on the current status. Has Zicam actually been recalled yet?  Because the last time I checked (which was some months ago), people were complaining that Zicam had caused them to lose their sense of smell, and the manufacturer of Zicam, Matrixx Initiatives, was pushing back pretty hard, saying it was perfectly safe and the hundreds of complainants were all making it up.

Around that time, I got quite engrossed with the unearthing all the herbal remedy scams I had found and I stopped following the Zicam stuff. I actually forgot about it until one fell on my head.

(Hello, Mr Newton)

So it turns out, I had stopped following the story right before the FDA stepped in. Sometimes the FDA, being big and lumbersome, is a bit slow to respond.  Anyhoo, the FDA set a letter to Matrixx, telling them to cease manufacture of three products, and on the same day, they issued a consumer warning about the same three Zicam products. The following is only an excerpt:

On June 16, 2009, the Food and Drug Administration (FDA) warned consumers to stop using and discard three zinc-containing Zicam intranasal products. The products may cause a loss of sense of smell.

Intranasal products are administered through the nose.

What products are affected by this warning?
FDA's action affects Zicam’s three intranasal products that contain zinc. The three Zicam products claim to reduce the duration of the common cold and the severity of cold symptoms.

The products (listed with their size and product numbers) are

• Zicam Cold Remedy Nasal Gel (15mL, NDC 62750-003-10)
• Zicam Cold Remedy Swabs (20 swabs, NDC 67250-003-20)
• Zicam Cold Remedy Swabs, Kids Size (20 swabs, NDC 67250-003-21)...

...Why did FDA take action?
The agency has received more than 130 reports of anosmia—the loss of sense of smell—associated with use of these three Zicam products.

So yes, I should officially throw out that Zicam. And unlike my secret (and dwindling) stash of VIOXX, I actually will.

But I still had some questions about how Matrixx Initiatives have handled this whole incident and continue to handle it. They did not immediately recall the product when the complaints first started. Instead they waited until AFTER the FDA sent them a letter TELLING them to withdraw the product. And even then, they were protesting all the way!  See this story from US News, particularly their response to the writer's e-mail.

And on their website, in the Frequently Asked Questions page, there is this little gem (the question is "what research has Zicam done to show that its Cold Remedy nasal products do not cause loss of smell?")

The safety of Zicam Cold Remedy is substantiated with multiple studies:

(1)    An epidemiological study demonstrates that three of the most common conditions associated with anosmia are the common cold, sinusitis, and nasal injury.  This population study in 3.7 million patients demonstrated statistically significant associations between anosmia and numerous medical conditions and multiple classes of drugs.  These factors confound any attempt to attribute an association of anosmia with Zicam Cold Remedy zinc gluconate nasal gel.

(2)    Anatomic and behavioral data obtained in animal studies showed no detrimental effects on smell associated with single doses of Zicam intranasal zinc gluconate gel equivalent to between three and 6x the recommended dose for humans.  Even at doses up to 15x the recommended dose, little or no effect to detect odors was uncovered.

(3)    Human in vivo and cadaver studies using our dosage form and nasal pump delivery device confirmed that Zicam intranasal zinc gluconate gel does not reach the upper area of the nasal cavity where smell reception occurs.

(4)    Four peer-reviewed clinicals of intranasal zinc gluconate gel products showed no difference in olfactory function between the treated and placebo subsets.

...and another answer to an FAQ (in response to a "frequently" asked question about the "unpecedented" FDA action:

We believe it is unfair for any Federal agency to take the kind of precipitous action it took against the company in a situation like this.  Had it talked with us, we would have shared with this regulatory body the compelling data and information showing that Zicam Nasal Gel and Gel Swabs are not unsafe.

WHAT? 

As I brought it up already, let's look at the VIOXX recall in comparison to this one: Merck noted in their OWN data that there was a small chance that VIOXX caused heart problems, so it voluntarily recalled the product first, then told the FDA and everyone else. Even though this decision probably cost them billions of dollars, they did the right thing. I don't usually have much good to say about Big Pharma, but I have to hand it to Merck here. They realized there was a chance that  people were being hurt by the product, and they did the right thing. They put people and reputation before money. ..and yes, OK: They probably thought it might avert some lawsuits (It probably didn't. This is America, people).

Unfortunately, the FDA needs to rely on manufacturers to do the right thing. They have limited resources, so they can only audit every two years.  If a problem is noted right AFTER an FDA audit, there is two-year window before the FDA will find it (unless complaints direct from the public or medical community start flooding in). Therefore, the FDA needs to rely on the decency of the drug companies to report issues, because most people and doctors who find a problem with the drug will report it to the drug company first, and may not report it to anyone else. As I pointed out before, Many people -particularly consumers- don't know they can report directly to the FDA and many doctors won't bother -particularly as Zicam requires no prescription.

So, this is directly to Matrixx Initiatives about their whining: The FDA took this action because they had no choice. You were not only ignoring the complaints, you were trying to dispute them. The FDA had to step in to protect people (and children -there was a children's version on that list!) because you refused to.

And now you have the nerve to whine about it? 

Grow up!

But I'm not finished. Here is another little gem from Zicam's FAQ page. This in response to a question about consumer complaints being withheld from the FDA:

Matrixx has always cooperated fully with the FDA, willingly shared all information requested by the FDA, and fully complied with its understanding of the FDA’s regulations. Any reports to the contrary are simply not true. As required by FDA regulations, Matrixx has always maintained detailed records of all consumer complaints and followed up with them. In the past four years the FDA has conducted two audits of the company, most recently in May 2009. During each audit, Matrixx made available to the FDA all adverse event complaints received by the company, along with complaint trends. These included all consumer complaints alleging loss or diminishment of the sense of smell.

Let's read between the lines here, and remove some of the spin.

...and fully complied with its understanding of the FDA’s regulations

Translation: we didn't KNOW we had to report adverse reactions to the FDA (yeah, right)

As required by FDA regulations, Matrixx has always maintained detailed records of all consumer complaints and followed up with them.

...but not actually SHARED them with anyone, like other consumers or the FDA.

In the past four years the FDA has conducted two audits of the company, most recently in May 2009. During each audit, Matrixx made available to the FDA all adverse event complaints received by the company

OK that makes sense, the FDA audits biannually. The timing is very interesting here, don't you think? The FDA audits them in May '09, then issues the warning in June '09.  Why?  Because Matrixx didn't report the adverse complaints voluntarily, that's why. Instead, they waited for the FDA to go in there and find them.

Let's just imagine the scene:

FDA Guy:  "hey, Mr. Matrixx Executive, What's in this folder tucked in here at the back of the drawer?"

Matrixx Executive (breezily):  "Oh that's nothing.  Just some positive consumer feedback.  ...er.  Have you any plans for the weekend?"

FDA G.: "Well let's take a look." (starts to remove the folder and open it)

M. E.:  "No!" (starts to move towards the FDA guy, hand outstretched to take the folder, thinks better of it, stops and clasps hands awkwardly) ...it ...it's nothing really..."  (sees the FDA guys face) Oh. You mean THAT folder?  The red one? That's the complaints folder. I was just about to show it to you..."

FDA guy: (scanning the contents) "Some of these are pretty serious. Loss of smell? How come I have no record of these?"

M.E. "but we followed up with all of the customers. We're not supposed to tell you about this stuff, are we?   I thought that.. I mean, well... (claps hands, smiles, attempts lightheartedness; -fails) ...you know about it now!

...Hang on a tick. I need the bathroom..."

(Matrixx executive rushes from the room, looking ill. However, he heads towards the CEO's office, in the opposite direction of the bathroom)

(I should write for (bad) TV. My friend AM always said it.)

And so the FDA action was taken.

One might wonder why Matrixx were so reluctant to report this adverse data and recall the products. Well the answer is very easy: Money. Have a look at their stock price. 

June 15th: $19:24
June 16th: $05.78.

Note that the volume spiked hugely too, in what was obviously an enormous selloff.

If I take into account that MTXX now have about 9.46 million shares out there,  we can estimate that the company was devalued by approximately $127 million dollars in one day in the US alone. (there are at least two other listings on other exchanges, but I didn't check them. I am pretty confident the Matrixx stock price didn't rise anywhere in June).

That's $127,000,000.00.  Just in the US.

Ouch.

So unlike Merck, Matrixx put money before people or reputation.  But you know, I bet if they had done the right thing, they would have lost less money. In fact, as a former Wall Streeter, I can almost guarantee it.  believe it or not, the market does actually take notice of things like corporate responsibility.

Speaking of corporate responsibility: I noticed when researching the stock price stuff that there was a change in principal officer. Great!  I thought They are cleaning house. But no. Instead they are promoting the guy who was acting helmsman at the time of the FDA action, to official helmsman.

Nice.

I have now decided not only to throw out the nasal swabs. But I will also throw out the (not-recalled)  Zicam tablets I got for the kids, too.

I'd rather deal with a cold than use their product

P.S. I had to laugh: When spellchecking this piece, the spellchecker, which did not recognise "Zicam" as a word, kept suggesting "Scam" as the alternative! 

P.P.S. Matrixx have until Sept 15th to respond to a class-action lawsuit (the first?) Let's watch the stock price then, shall we? 

Just for a laugh...