One Sick Mother

Brain Surgeon and Tachycardia

After several reschedules, I finally got to have my annual appointment with me brain surgeon last week. I know I am not a surgical candidate, but I see him annually to review the situation. I also like that this guy reads MRI films himself. He does not rely solely on radiologiost reports, (if I hand him both the reports and the films, he looks at the films first -love that guy!) so I brought along my latest films. I had spotted a huge error in the radiologist report for this series, and although it had been 'corrected', my faith was somewhat shaken in them and I wanted a new set of eyes on them.

Good news! The doc backed up the radiologist. My syrinx has indeed shrunk. He has no idea why, because he has no idea what caused it in the first place, but it has shrunk. Hurray!. I do wonder if correcting that B12 deficiency has contributed to the shrinkage. I know some people believe that there is a link between idiopathic Syringomyelia and B12 deficiency, and I know I definitely had a deficiency. -I just don't know for how long. Of course, I know me reflexes are still out-of whack below the level of the syrinx, but I guess we will just have to monitor that to see if it is residual damage or some kind of progression which is showing up clinically, but not on MRI

We talked about the epilepsy/no epilepsy thing and I mentioned the thyroid connection. He said that he believed there was some indirect connection between epilepsy and thyroid hormone, but I would need an epileptologist to figure it out.

He also mentioned again that the tolerances in my neck are very tight. That make sense to me. I know I only have to pop a disk in my neck a teeny bit and I will have pain from there down to my finger- and toe-tips.  Neither of us think surgery is warranted at this point. I can usually get a popped disc back in place within a day or two. I guess practice makes perfect!

Now I just have to get him talking to my neurologist (#25). This may prove difficult. I have been trying to get in touch with #25 myself since yesterday and we missed each other. I need to talk to him about a lot of issues I have been having with tachycardia recently. For example, I am just sitting here typing and my heartrate is 112. This is not normal for me. I think the problem is the Nortriptyline. I mentioned this to #25 previously and he blew it off, but it seems to have gotten worse in the past week (I only started monitoring it a few days ago).  Well, I nixed the Nortriplyline and so far, no improvement -although I believe this particular drug has a long half-life.

I guess the other possibility is blood volume. This crazy diet of mine is a natural diuretic and I know I had blood volume problems to begin with. I have been taking lots of salt and drinking lots of water to try and keep my volume up. So far it is not helping (which is why I suspect the nortriptyline even more).

I feel a lot more sympathy for people who have POTS now! Man! Tachycardia is exhausting!  I am low-energy to begin with, but now if I even wash the dishes, my heartrate goes to the 130s and I feel short of breath. It really is a bummer.  I know some people with POTs can have a resting heartbeat of 150 and I don't know how they get through the day. I suppose one adjusts over time. People can adjust to astonishing conditions, but I still feel for them.

Crazy Diet, Fewer Seizures

I spoke to #25 awhile ago, about the new drug because I thought it was not helping, In fact, I thought the seizures were worse. I also mentioned at the same time, that I had changed my diet back to low-carb (as recommended by my endocrinologist), but it didn't seem to make a difference this time, with the nortriptyline on-board.  Anyhoo 25 asked me to test my urine for keytones and he was interested to see if I felt better when keytones are high. (just FYI Keytones are produced when the body burns protein and fat for fuel instead of carbohydrates -that's the low-tech explanation).

Well, it took me awhile to get to that point. I had to change from low carb, high protein, low fat; to no carb,  medium protein, high fat. Kind of like Atkins on steroids.  It is not a fun diet, btw, but my ketone level went up.  I'm sure my cholesterol level did too...

However, If I make it past tonight, I will be free of major seizures for a week.

So all this is making me wonder about Epilepsy again.  You know, years ago -before Big Pharma, doctors figured out that if you starve an epileptic, the fits stopped after a couple of days. Naturally, this was not a sustainable course of action, because the poor epileptic would eventually die of hunger (but seizure free!). But the doctors reckoned that the key was in ketone bodies. When the body is starving and living off its own reserves, the brain mostly runs on ketone bodies, not glucose. So doctors set about devising a special diet to simulate starvation conditions in the brain.

It is called the ketogenic diet and is very complicated to follow. It is not used for adults because of the humgous fat content (90% fat!). It is often used as a last resort for children with intractable epilepsy who do not respond to the drugs. Johns Hopkins is the one place that has offered the ketogenic diet as a treatment since the 1920s, when it was first devised. Since the introduction of Dilantin in 1938, most epilepsy treatment centers forgot about diet and focussed on drug therapy instead. Nuff said about that or else this piece will turn into a OSM tirade agains Big Pharma, and we don't want that.  Not today, anyway.

So while I have not been following a real ketogenic diet in the strictest terms, I have been approximating it.  And it is early days yet, but it seems to be helping.  (so much for not treating myself with food.)

You know I always knew -and I TOLD anyone who would listen (and many who wouldn't) that my worst symptoms were after eating a meal and when my blood sugar levels were high. Of course. most didnt; believe me. They just assumed that I must have tested wrong, or my sugar had somehow plummeted and then raised up again and the fits were due to low sugar. Even with #25 on the phone the other day, I had this same argument! I don't know how much I have to hammer into these people's brains that I was a systems and business analyst. I don't present findings unless I am sure of them. Sheesh!

Now I am not jumping to conclusions after just a week, but I am definitely starting to wonder if my seizures, which have variously been called  "non-epileptic", "psychogenic", "panic attacks" and "pseudo-seizures" (and probably some even less flattering terms) are in fact Epilepsy after all?  And although I will be glad if this beast I am fighting finally has a name, I will be severely pissed that it took almost two years and untold money and  suffering (mine) to finally name and treat such a relatively common condition.

One Foot, Two Feet, Old Feet, New Feet

So I told you about Joe getting orthotics a few months ago due to flat feet and leg pain. I haven't had much time since then to talk about Joe's feet, because I have been too wrapped up with Joe's behavior -mostly in school. He has been having a tough time socially, butting heads with some of the kids and not handling overload and conflict very well. I put it down to developmental immaturity on his part, and the school has been great about working with us, but at the back of my mind, I wondered "why now?"  I had expected this kind of thing at the beginning of the year, not the end: Fourth grade is Joe's first year as a mainstreamed student, so it makes sense that he would have some difficulties, but so late in the year?

I kinda-sorta wondered if the orthotics might be linked to the behavior regression, because the timing seemed suspect to me. However Joe never complained about the inserts and if i asked him how he was doing with them he would answer "OK". So I pushed that thought to the back of my mind.

Then, about three weeks ago, the whole family -plus one or two other kids went to Target to pick up some stuff. I swear we were barely in the door, when Joe started complaining that he was tired and needed to sit. This has been happening a lot recently. Finally, I started to question him again about the shoe inserts. Yes they hurt him and bothered him. I took them out of his shoes.

We had an IEP meeting at the school today and Joe's PT mentioned how she thought that "sunny Joe" was emerging again, having (having been "monster Joe" (but she said it more nicely) for most of February and March). I told the tale of the othotics and several of the other teachers nodded and said that they had seen improvement in Joe's behavior and overall well-being in recent weeks.

Of course the podiatrist will probably beat me with a stick! Oh well, you can't please all of the people all of the time. I will take him back and maybe we will see if maybe we can do less aggressive orthotics.

In the meantime, we are all enjoying "sunny Joe"

Four Eyes Come Full Circle

A friend reminded me to update you guy on my daughter's situation.  You remember last Friday I took her to the ER because she had double vision for over 3  hours?

Well, on Monday I yanked her out of school early for an emergency ophthalmologist appointment.  She had only been there a month ago but they still gave her a very comprehensive work-up, particularly checking her tracking and how her eyes worked in sync (or not).

At the end of the appointment, the doc tell me that he is pretty sure it is a problem of low tone in her eye muscles. He said that her eyes sometimes diverge to work as two individual units instead of a whole. if she is tired, she probably cannot get them to converge again. He thinks eyestrain may be a contributing factor. She needed glasses last month -was just on the border for needing a prescription, but her regular eye doctor had wanted to hold off until after the summer recess. Well, we are holding off no longer. Right after the appointment, we went to the optometrist with our shiny new prescription and picked out frames.  We picked up up her new glasses yesterday.

She is delighted to finally be wearing glasses. I heard her telling one of her friends. "Next, I'm going to get braces!"   Quoi?  How strange is that kid?  What child *wants* braces and glasses? Has 'Ugly Betty' become such a cultural icon that 8yo girls are feigning squints and overbites? I could probably go back to the ICD-6 and find a suitable diagnosis for this behavior; Maybe "Hero Worship", "Mental" or "Away With The Fairies" is in there. I never thought to check.

Now if I were a good sick mother, I would have thought to take a photograph of my darling in her new glasses to post here, before she took off on her sleepover playdate. But I'm not.  I may get one and slot it in later.

But I thought glasses was fitting end to the double vision saga, which started with the statement "you have four eyes" Because now I can retort "No, I don't. But you do!" 

(Yes: Underneath it all,  I am actually 12 years old...)

A Little Time

I have been thinking about time a lot recently. Not in a bad or morbid way, mind you. But in a how-a-little-time-can-make-a-big-difference kind of a way.  Some nice things happened to me recently -betwixt all the madness- that is. And it was great to have the madness somewhat perforated by nice, because those little holes let the light shine through.

I recieved a beautiful gift recently. A friend knit a prayer shawl for yours truly. I was blown away by her kindness and by all the work and thought and prayer she put into it  -all for little old me; a person she had met exactly once. OK so that shawl didn't take a little time. I used to knit, and I know a lot of work went into it. It took more than a little time.

On Saturday and friend and I had breakfast together. After Friday evening spent in the ER, it was nice to go out and concentrate on someone else and just take a break from everything. I remember I walked out of that diner feeling very happy and elevated. I looked at my watch. I was stunned to realize that I had  been out of the house for less than 90 minutes. It had felt like much longer; so intense had been our conversation. And I just *felt* so much better for having had those minutes with a friend.  It struck me that a few minutes with the right friend can make a huge difference to one's well-being..

Sunday was a quiet day. It was rainy and miserable. The boys took off to see Speed Racer and my daughter and I had the house to ourselves. I was not feeling very well -not up to playing games or starting any big projects, but I wanted to do something with my girl. We very rarely have the house to ourselves. I went looking for her, and found her wrapped in my prayer shawl (to which she has taken rather a liking), watching TV.  Then I had an idea: It took a little searching, but I eventually found the box on a high shelf in a closet.

I took the box to the living room and asked her to help me open it. She pulled out balls of yarn, needles and long forgotten unfinished knitting and crochet projects of mine. Her eyes lit up, as I knew they would. So we selected some pink yarn, and some short needles. And right there, sitting on the living room floor, I took a little time to teach my daughter to knit.

The View From The Door.

Friday nights are busy for us. We eat pizza (pizza on Fridays appears to be the law around here), come home, the kids get changed into their Judo gear and we go to their Judo class.

So I am standing at the front door, holding it open with one hand, herding one kid out, and calling back to the other kid to hurry, when kid #1 looks up into my face, laughs and says "You look funny. You have four eyes".

Now if I wore glasses, I would not think twice of this remark, but I don't. "Four eyes?" I asked. "Really?" She laughed. "Yes!"

"How many heads do I have?"
"Two"
I held up two fingers. "How many fingers?"
"Four"
I stood back. "how many moms?"
"Two"

(Shit.)

Double vision in an eight-year old is not a good thing. I asked her when it had started and she told me it had started at school during gym class.
"What time is gym?"
"2:15". 
I looked at my watch: 5:17. So the kid had had double vision for three hours and not told anyone!  I instantly revised my plans and instead of going to the pizzeria, we went straight to the urgent care pediatrician.  I don't take chances with stuff like that. Forget 'wait and see'. We can 'wait and see' in the doctor's office where there are licensed professionals at hand should the view prove not to our liking.

The pediatrician wouldn't even see her. They told me she needed a CT scan and sent me straight to the Children's hospital. In Friday rush-hour traffic in the teeming rain.  Without dinner.  It was just me and the two kids so I had to take them both. I half expected Joe to melt, but he took the change in plans very well. I guess he understands that I only go to the hospital if needed.

Halfway to the hospital she tells me her vision is OK again.  I did wonder if I should turn around, get pizza and go to Judo, We would have made it. But then I thought I would never forgive myself if it did turn out to be something serious. And Judo probably isn't the prescribed treatment for an unknown neurological  or eye problem. That last part was just a hunch of mine, but I decided to go with it. I took her to the ER.

We were attended pretty quickly, even though by now my kid was fine and engaged in a spirited game of "hand spiders" with her mom (Joe had found a snack machine and The Cartoon Network on a TV and was happy).

Long story short: We were there for several hours. She aced all the neurological exams. They decided not to CT scan her for now and we have to follow up with her pediatrician and the pediatric ophthalmologist. She just saw him last month, but oh well...

So I was driving home and stressing. What if she needs glasses? Our vision coverage is crappy. Joe just got brand-new glasses last month. Within two weeks he had lost them.   They were lost lost. I had turned the house up-side down, had called the school, the community center, the pool, the bus company, the neighbors. Everyone. Those glasses had not shown up. I had resigned myself to buying him another pair. And now I am thinking what if *she* needs glasses too? Where will the money come from?  I had known she might need glasses in six months... But that was OK. If the kids' ophthalmologist appointments are six months apart, that is one pair of glasses every six months instead of two pairs every twelve months. That is easier to do.  But now I might be looking at buying three pairs in two months, and that is not very do-able at all right now. <...sigh>

At bedtime, I was trying to contain an overstimulated Joe, who was quite delighted to be going to bed at 10:45pm (although he reminded me that if you don't account for daylight Savings Time, it is only 9:45pm. I assured him; yes. this is a new record). I ended up in an unfamiliar location; standing in his room, at the door, calling for him to come to me. While I was waiting, I happened to glance to my right. I glanced again: There, on top of a battleship game, which had somehow gotten itself trapped behind the door, were Joe's new glasses.

At last something good has come of this day.

I'm going to bed quick before something else happens. I want to finish the day on a high note. 

For once.

The View From The Floor

In the past week or so my seizures have gotten much worse. I don't know if it is because of the diet change or the new medication. I suspect the medication, because this pattern of events feels scarily like the last time medication made my seizures worse. That last time was the time the Verizon guy had to call an ambulance for me. I bet he'll never forget that housecall.

So anyone who suffers with a convulsive disorder knows when you feel a fit coming on, you should lie on the floor.  One can't fall off the floor, no matter how violent the convulsions become. 

I have spent quite a lot of time lying on my floors this week. Carpet is better than hardwood or tile, BTW -just in case you ever find yourself feeling a fit with some seconds to spare.  Sorry to state the obvious (and my ex boyfriend would be proud). I made a mental note to self to go to a carpeted area next time I feel a fit encroach.

So yes. I have been lying on the floor a lot -in varying states of mobility, immobility and spasm. Your mind kind of wanders a bit when you have a seizure -at least mine does, so I can find myself thinking about fluffy bunny rabbits one minute and then surprised to discover Joe's long-lost blue sneakers under the couch the next. Then I might think about the woman who worked in the corner grocery store when I was 5. Then remind myself to vacuum that bit along the edges of the entertainment unit where the upright cleaner doesn't quite reach. Then be surprised to find Joe's long-lost blue sneakers... ad nauseum. I am not at my witty best in these moments. I admit.

And all the time I ask myself "what next?" because I am running out of ideas and specialists. I came very close to asking for am ambulance last night because it just went on so frickin long. But why go to the ER? They never ever help me there. They just treat me like some kind of freak. So I chose to suffer in the comfort of me own home. There may be more dust bunnies here, but they don't judge me and at least I know where they have been.

Other People's Children

Sometimes, as a parent of a child with needs (or two), it is hard to look at other people's children; how capable and related they seem in the world, and how easy some things are for them. They seem to breeze through those everyday social interactions which are so difficult for my children.

Now don't get me wrong. I don't resent other parents or their typical  children. I got over that long ago. I have long learned the only children I should compare my own against was themselves in the past. Looking back as where my children were 6 months, 12 months or 3 years ago, against where they are now, I can see how much progress they have made and how much they have grown and progressed. I can look back even farther and remember when I was told my son may never talk or go to regular school, and I am blown away by how far he has come. So I don't begrudge my friends their typical children. I learned as time goes on, that most of my friends have some kind of struggle or concerns about their typical children. Parenting isn't easy. Period.

My son recently discovered a new love:  The double chocolatey-chip Frappuccino at Starbucks. Man, It is great to have a new "something' to be used as a behavior reward. Even he can max out on Pokemon and  Bakugan cards and figurines. I know I maxed out on them years ago.

So today, Mother's day: Himself took our daughter out on a 'secret mission', and Joe and I were left to our own devices.  That kid is no fool. He knows his mom loves coffee Frappuccino  just as much as he like his chocolatey chip one. So Starbucks was casually mentioned in that way he has, looking at the ceiling, with one elbow aloft, (you know, casual...) and I agreed, -on condition that he order his own drink.

I'm a stinker. I freely admit it.

We practiced before we left the house, and again in the Starbucks parking lot. We role-played, with me being a barista and asking questions which might throw him like "With whip or no whip?" and he answered fine.

We waited in line and he was nervous. He jiggled and danced and flapped, but he was smiling and ready. Then his turn came. I kind of froze, trying to act casual. The barista was only half-listening to him, Sharpie at the ready,  not making eye contact. I am not sure it this helped or not. He stuttered a little bit, but then he took a breath an said it perfectly: "A tall chocolatey-chip Frappuchino with no whipped cream"  I had to prompt him to say please, but hey! That hadn't been in the script to begin with. The Gods were watching us, and no-one messed up his order (our local Starbucks people are very nice, but not perfect). We walked out of the store with our drinks, both with huge shit-eating grins on our faces. We both knew he had done well and we celebrated with a grin and a hip bump, Joe walking out about an inch taller than when he had walked in.

And in that moment I felt kind of sorry for the parents of other children. Their kids seem to just learn these casual interactions, they don't need to be taught or coached. A trip to Starbucks for them is probably a casual thing -nothing to think twice about. On the other hand, I knew that I would always remember this Mother's day when Joe ordered his first Starbucks Frap. And in that moment, I caught myself feeling sad for typical parents. I stopped myself and asked myself why would that would be?  And then it hit me:

Typical parents don't celebrate these little successes the way we do. They just sort of expect little successes and may be disappointed when they don't happen automatically. Special needs parent recognize and celebrate all these little victories. We recognise each achievement for what it is. Typical parents celebrate the big victories, but not the little ones.  Because of this, they have far fewer celebrations in their kids' lives than we do.

And I felt a little sad for them. And for their kids.

Autism And Schizophrenia Linked! Part III

(This is the third of a three-part series. The full version is available under the "Articles.." section <-- to your left)

I want to make a few things clear here: I am not claiming that every parent in this study who was diagnosed as schizophrenic was misdiagnosed. I don’t doubt that there could be a correlation between schizophrenia in parents and Autism in their children. However, I am saying that any correlation this study claims is probably not nearly as strong as suggested. I suspect that it is highly probable given the timing of the study and the diagnostic tools available at the time, that at least some of the parents may in fact have Autistic Spectrum Disorders (ASDs) as opposed to true schizophrenia.

 Here is the core problem as I see it: Dr Daniels is an epidemiologist. Nothing wrong with that at all.  Here is MedicineNet’s definition of the same.

Epidemiologist: A person engaged in epidemiology (not confined to epidemics). Epidemiologists include people with an M.D., Ph.D., D.P.H. (Doctor of Public Health), M.P.H. (Master of Public Health), R.N., and a number of other degrees.

So I suppose Epidemiologists are kind of like the actuaries of the medical world. They assess risk. They are essentially number crunchers, not diagnosticians. They are much needed to track progression and potential  distribution patterns of transmissible diseases such as flu and SARS. Their science works very well for this kind of information, because most of these diseases tracked are easily identifiable, and there are definite tests for them.

However applying the principles of epidemiology to something like the Swedish data is fraught with error potential. Especially when you consider the timeframe and the fact that several of the diagnoses in question did not exist for a lot of the first generation in the study. I think this means that the data sample is more than likely tainted, and Dr Daniels, -not being a psychologist, a psychiatrist or a neurologist, is not qualified to determine which of the cases (sorry . I cannot bring myself to say “cohorts”) in each dataset are real, and which may have been misdiagnosed.

Therefore I think Dr Daniels –in attempting to look purely at numbers- overlooked some circumstance of history and climate in Sweden at the time, and failed to establish if the diagnoses which may have been made years ago would hold up today, given the advances made in psychiatry and the changes in thinking which have transpired in the intervening years.

So in my opinion, the whole study was built on a house of cards. I would love to see someone like Dr Fitzgerald (keep going, he appears a bit later) get a hold of it.

...and speaking of him: I promised you some backup for me theory, didn’t I?

Well, I wondered if my hypothesis could be correct: i.e. that some people with Autism could have been  misdiagnosed as schizophrenic, especially some years ago, before Autism made it onto the map –so to speak. Even today, the diagnosis of psychological and neurological conditions is a tricky business. The DSM, The manual most commonly used in the USA, comes with it’s own set of disclaimers, of which I am sure the following is only one:

This is also an important limitation of the DSM system.   Patients sharing the same diagnostic label do not necessarily have disturbances that share the same etiology nor would they necessarily respond to the same treatment.   It is therefore critical to understand that the diagnostic terms and categories in the DSM represent only our current knowledge about how symptoms cluster together.   We fully expect that, over the coming decades, the DSM system will be radically reorganized as the etiologies of mental disorders become better understood.

Recently, I found an interesting paper published by a couple of my countrymen a few years ago. It is a great read about how Asperger’s syndrome can be mistaken or misdiagnosed, and outlines the potential misdiagnoses and the differentials.  Here is a excerpt from that paper.

Schizophrenia is a disorder in which psychotic symptoms (delusions or hallucinations), thought disorder and so called 'negative symptoms' cause social and/or occupational dysfunction over time. Because individuals with Asperger syndrome have  normal cognitive ability, restrictive behaviours and impairments  in social interaction and communication can be misinterpreted as evidence of schizophrenia. People with Asperger syndrome have difficulty understanding the subtleties of social behaviour, but this should not be confused with evidence of psychotic disorder. In a clinical setting, asking individuals with Asperger syndrome whether they hear voices may induce a positive response, and they might concur that they hear voices "when people aren't there", but they may be refering to the voices of people in an adjacent room. Deficiencies in concrete thinking and in understanding how other minds think may cause patients with Asperger syndrome to misinterpret what is said to them, and they might as a result be labelled paranoid. Misinterpreting social contacts can also lead to inappropriate emotional responses, contributing to this impression. Persons with Asperger syndrome sometimes speak their thoughts out loud, which again can be misinterpreted by a psychiatrist. 

That is interesting, isn’t it?    There’s more..

Schizoid personality in childhood (DSM-IV)
Schizoid personality in childhood is defined by solitariness, lack of empathy, emotional detachment, increased sensitivity, at times paranoid ideation, and single-minded pursuit of special interests. All these features are seen in Asperger syndrome, and comorbid issues (depression or behaviour problems in particular) are likewise similar for both conditions. On the basis of evidence presented in Wolff's (1998) discussion of schizoid personality in childhood, we have concluded that there is significant overlap between schizoid personality in childhood and Asperger syndrome. 

Schizotypal personality disorder (DSM–IV)
The DSM–IV diagnosis of schizotypal personality isorder depends on odd beliefs or magical thinking, bizarre fantasies or preoccupations, odd thinking and speech, odd, eccentric or peculiar behaviour and appearance, lack of close friends and social anxiety. All of these criteria can also occur in Asperger syndrome, and Wolff (1998) regards "Asperger syndrome and schizoid/schizotypal disorders as interchangeable terms that identify roughly the same group of children". The conditions do differ in at least three important respects. First, there appears to be an increased rate of develop-ment of schizophrenia in schizotypal personality disorder. Second, schizotypal personality disorder and schizophrenia co-occur in families and appear genetically related. Third, prospective research of children at high risk of schizophrenia (Erlenmeyer-Kimling et al, 2000) suggests that some individuals later diagnosed with schizotypal personality disorder developed without impairments in reciprocal social interaction and communication.

And here is some interesting information that it can and has happened, even here in the States:

"David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic."

...and a link to the Full Article http://www.post-gazette.com/pg/08037/854963-114.stm

You know, The more I dig into this issue and the more I question it, the more it seems very likely that Julie Daniels study had grossly exaggerated many of the numbers and ratios regarding parental mental illness and autistic children I believe history will show a more logical conclusion; that parents with an Autistic Spectrum  Disorder (ASD) are more likely to have children with an Autistic Spectrum Disorder. I hope it will have a positive effect (negative for Dr. Daniels) of highlighting how misunderstood was Autism in the past, and how many ASD people –now adults- were misdiagnosed as mentally ill in the not-very-distant past.

Now, I gave Julie Daniels a chance. I read her full article on the Pediatrics Website (linked below), I figured somewhere in there she would give some kind of a nod to the fact that she was comparing contemporary apples to historical oranges. The only thing I found is this:

"Diagnostic practices in psychiatry continue to change, and case definitions become more narrow for both adult and childhood psychiatric disorders. Thus, it will be important to  assess the relationships between parental psychiatric disorders and an offspring's risk of autism in other data with more detailed and complete ascertainment of psychiatric disorders for parents and offspring."

No shit, Sherlock.

Well Julie,. Perhaps you should have thought of that before you set a whole generation of parents –who have quite enough on their plates already, -thank you very much –back about 60 years.

Why not just be done with it bring back the term “Refrigerator Mother”?

I just thought of a new name for Dr. Daniel’s study. “Researcher vacuum-sealed researcher reinvents the refrigerator parent”.

Thanks, Julie Daniels. Thanks from the bottom of my arse.

 

References:

Text of the study in Pediatrics magazine  http://pediatrics.aappublications.org/cgi/content/full/121/5/e1357

Diagnosis and differential diagnosis of Asperger’s syndrome by Michael Fitzgerald and Aiden Corvin http://apt.rcpsych.org/cgi/content/full/7/4/310

The ICD-10 http://www.who.int/classifications/apps/icd/icd10online/

The DSM-IV-TR  http://www.dsmivtr.org/index.cfm

 

 

Autism And Schizophrenia Linked! Part II

(this is the second of a three-part series. The full version is available under the "Articles.." section <-- to your left)

I figured the place to start was at the beginning and have a look into how these respective diagnoses originated as official diagnoses as opposed to theory and research. Of course, there have been schizophrenia and Autism long before there was psychiatric medicine, but I think –especially as regards this particular study and these particular diagnoses- that the timing is key. As is the location. The study was preformed in the US. However, the patients, doctors and the diagnoses were all Swedish. Do the Swedes use the same diagnosing standards as the Americans? No. They use a different manual. (The ICD as opposed to the DSM in the States) That was accounted for in the study –kinda - although they did not take into account *when* the parents' diagnoses were made. Which I think is key. Also I wonder if there was a human factor at play here that may have been overlooked? Numbers are seldom purely random if humans are involved.

What do I mean by a human factor? Well, there are more than one. For a start let’s look at human doctors: A doctor goes to med school and learns whatever is in vogue to teach at the time. Later he (this is Europe 30/40 and more years ago. It is probably safe to assume the majority of shrinks were male) goes into practice and may or may not keep current with the research. He will get his updated diagnostic reference guide every 10 years and may or may not use it. Say a doctor practices for 40 years in his career, there will be at least 3 or four changes to the diagnostic manual in that time: What will a doctor gravitate towards? What he learned in school, or what is around now? I think many –being only human will go back to what they learned in school. I think this explains in part why these manuals take so long to evolve.

An old doctor diagnosing one of the older parents from earlier in the study who may have been diagnosed as a child, could conceivably have been applying 19th century psychiatry, which has now ended up in this 21st century study.  Think about it

And the manuals do take a long time to evolve. “Dementia praecox” was debunked as a diagnosis in 1911 –replaced by schizophrenia. However the term still appears in the manuals as late as 1968! Asperger’s Syndrome was first defined in 1944, but it first appeared in the US DSM Manual in 1994. 50 years later! So what of all those Aspies who were born in the States in the intervening 50 years? Food for thought, eh?

Indeed, what of the Auties and Aspies born in Sweden from the 1940s to the 1980s? We know they started to get identified in 1977 (whop-de-do!), but what of their parents?

Now –just for the record and to keep things simple: I am not disputing the Autism diagnoses of the children in the group study. Let’s assume they are sound. I am most curious about the diagnoses of the parents, because that is where I think the timing is most suspect.

The current diagnostic standard in use in Europe is the ICD-10. There have been ICDs 1 through 9 also. The manuals covering the period in which we are interested (if we assume the parents were between 20 and 40 when the kids were born, and could have been diagnosed anytime in their lifetimes, we are looking at a big window from 1937ish to the late 1980s or beyond (not taking doctror's age and education into account).

 
So what tools were in use in Sweden in that timeframe?
The ICD-5 1939
The ICD-6 - 1949
The ICD-7 - 1958
The  ICD-8A - 1968
The ICD-9 -1979 (probably not used for most of the parents)
The ICD-10 1999 (probably not used for the parents)

I found ICD numbers 7-10 online. I am kind of glad I couldn’t find # 5 or #6, because I was kind of shocked by some of the stuff the later versions contained. Now, I am used to reading published papers and research on conditions that I find on the Internet. I am used to the reading the current thinking on each subject. What I did not expect (and this explains a lot, considering the situation in which I currently find myself) was for the *official diagnostic manual* to lag so far behind the research across the board. If the diagnoses were made by the book, then there are definitely some problems with Dr. Daniels study.

Schizophrenia was put in the book sometime in the early part of the last century (I don’t know exactly when). Autism didn’t make it in until the 1980s. Asperger’s was even farther behind that. And -back to my “human” point- we have no idea when the diagnosing doctors were trained.

So let’s take a little look at that data with new eyes: this time with a view to the historical thinking on mental health. You get a different picture.

I didn’t have access to the ICD 6, but I reckon that it is safe to assume that it is even more outmoded than  #7 and #8. Autism was not defined as a separate disorder in either of them, but simple schizophrenia is (remember the 4 “A”?).

Interesting...

Also interesting are some of the other treasures of outmoded medical thinking to be unearthed in these diagnostic manuals. Here are some lovelies taken from straight from the The ICD- 7, the official diagnostic guide in use in Europe during the 1960s.

325 Mental deficiency

325.0 Idiocy
325.1 Imbecility
325.2 Moron
325.3 Borderline intelligence
325.4 Mongolism

Congenital malformations (750-759)

750 Monstrosity

So "Idiocy" and “Imbecility” were official diagnoses as recently as the 1968. Nice! So was "Malingering", BTW (795.1) and "nervousness" (790.0).   

But Autism was not.

So any of our parents who may have been Autistic and were diagnosed -in the state hospitals, people- in Sweden did not have a place in the book. The closest fit for them was probably one of these:

Psychoses (300-309)

300 Schizophrenic disorders (dementia praecox)

300.0 Simple type
300.1 Hebephrenic type
300.2 Catatonic type
300.3 Paranoid type
300.4 Acute schizophrenic reaction
300.5 Latent schizophrenic
300.6 Schizo-affective psychosis
300.7 Other and unspecified

 

OK so that maybe covers some of the older parents. But the manual was re-issued about every 10 years, right? Strides were made in the sixties and the benefits reaped in the 70’s right?

Well… yes... Some were.

However, the currently-no-longer-used term "Simple Schizophrenia” (4 “A”s) was still in use -inconveniently code-changed to 295.0. And no! Autism is not there. However "Involutional melancholia " (296.0) is! As is "Hysterical neurosis" (300.1) "Homosexuality" (302.0) (I swear I am not making this up!)  and this lot of lovelies which I just put in wholesale (who -in the name of God can physically affect their endocrine system? Or their “organs of special sense” Wha…?)

305 Physical disorders of presumably psychogenic origin

• 305.0 Skin
• 305.1 Musculoskeletal
• 305.2 Respiratory
• 305.3 Cardiovascular
• 305.4 Hemic and      lymphatic
• 305.5 Gastrointestinal     
• 305.6 Genitourinary
• 305.7 Endocrine
• 305.8 Organs of      special sense
• 305.9 Other

306 Special symptoms not elsewhere classified

• 306.0 Stammering and stuttering
• 306.1 Specific learning disturbance
• 306.2 Tics
• 306.3 Other psychomotor disorders
• 306.4 Specific disorders of sleep
• 306.5 Feeding disturbance
• 306.6 Enuresis
• 306.7 Encopresis
• 306.8 Cephalalgia
• 306.9 Other

"Malingering" still there in the 70s, BTW, now code 796.1

You know, all this would be funny, but I keep thinking of the real people and the real lives who were affected by this bullshit, and I just want to weep for them.

So where are we up to? Ah yes. We are coming into the 1980s. The parental diagnoses are probably tapering off, and the kids are being diagnosed. The ICD-9 was released in 1979. Maybe the ICD-9 will save us!

Good news! Infantile Autism (Kanner’s Autism) finally made it into the manual! It is 299.0 and it explicitly excludes schizophrenic syndrome of childhood (299.9)

Bad news: most of our parents would have been adults or teens in the 1980s (remember the first kids in the study were born in 1977) and would probably therefore not be considered for this diagnosis. What about Asperger’s syndrome? Is that in the ICD-9?

Actually, it is! …but it is not terribly obvious. It made it in as an AKA under the new category: “Other specified pervasive developmental disorders”:

ICD-9-CM Diagnosis 299.8

Other specified pervasive developmental disorders

· A childhood disorder predominately affecting boys and similar to autism (AUTISTIC DISORDER). It is characterized by severe, sustained, clinically significant impairment of social interaction, and restricted repetitive and stereotyped patterns of behavior. In contrast to autism, there are no clinically significant delays in language or cognitive development. (From DSM-IV)

· 299.8 is a non-specific code that cannot be used to specify a diagnosis (OSM Note: I took this from a 2008 version of the ICD-9 which is still in use in the US for billing and coding purposes. I think we can assume it was a valid code back in the 80s)

 

299.8 also known as:

· Asperger's disorder

· Atypical childhood psychosis

· Borderline psychosis of childhood

299.8 excludes:

· simple stereotypes without psychotic disturbance (307.3)

And in the ICD-9 there are now six  (6) different categories for simple schizophrenia (295.00-295.05)

So, if you are a doctor in Sweden looking to diagnose an adult, and these were your choices, which might you pick? One of the schizophrenias? Yeah. Me too. It is and established diagnosis and six times more likely than this new, unknown shit, right? Or maybe you would go with a simpler option like neurosis, a personality disorder or depression.

Um-hmmm….

I know some of you are saying that this is all pure and rather fantastical speculation on my part. So I read a few other papers.

...and I will tell you about them tomorrow.