WOW, D.F. ! ! ! That was about the clearest answer I have ever heard on this confusing topic! Thank you! It helped me to clear up my own thoughts about this.

That last part may be what was most puzzling to me - the part where the medical illness and all the stress from that biology interacted with the biology predisposing to schizophrenia. I realize it seems silly to separate them out into two different biologies - as if the predisposition to schizophrenia is a separate biology from the rest of the child's biology, but that is what we tend to do - compartmentalize them. I tend to see it all as the whole of my daughter. I found that saying "this is the schizophrenia biology" and "this is the migraine biology" and "this is the endocrine biology", did not recognize and treat the WHOLE. I felt that everything was interconnected. The migraine biology, sensory processing biology, endocrine problems, and even the "schizophrenia biology" was all HER BIOLOGY, and that biology and poor treatment of it influenced her "schizophrenia" biology escalating to the point it was called "schizophrenia".

What you said about it remaining labeled "schizophrenia" even after the symptoms de-escalate back to the where they were before the "schizophrenia" label is discouraging. That is like saying they really had "schizophrenia" before the label was given, but that is something I myself have mused about. She really did have a slew of problems and the biology of "schizophrenia" since birth. Even if we had prevented the acute prolonged break that go her the label "schizophrenia", it would NOT have prevented her schizophrenia biology she already had - with the sensory stuff, stress stuff, hallucinatory stuff, the brief psychotic episodes... in other words, they would have said we "prevented schizophrenia" but she still would have been SICK, just not with that label.

Now that we are treating her underlying biology (the "whole" - migraines, immune system, endocrine, etc), she is better off than BEFORE the "schizophrenia" diagnosis.

But if I understand your thoughts on this, the same symptoms that would not have been called "schizophrenia" BEFORE the acute prolonged psychosis would now still be called part of her "schizophrenia".

Hmmm... I actually think I understand the logic of that. BEFORE the label "schizophrenia", all the symptoms are just considered a **possible** "schizophrenia prodrome". Afterwards, those same symptoms are called "residual" schizophrenia symptoms.

But from my own point of view as her mother, that is silly. It is all the same biology. The "prodromal" biology could always easily escalate to psychosis with "stress" from medicines, stress from rashes, stress from happiness, stress from diet, stress from allergies, etc. So here is a new question...

If it had been kept at that level, we would have "prevented her schizophrenia". So, why not, now that we are back to that point, is it not considered to be that we have "cured her schizophrenia"????

Either way, we don't really "prevent" her biology, nor "cure" her biology. All we are doing is treating her biology.

But since the "schizophrenia" is just a label for the set of symptoms, it still seems that if some psychologists say we can "prevent" the "schizophrenia" by keeping her symptoms from getting to that label, then they should equally view it as a "cure" to get the symptoms back to where they were before the label. Either way, we still have to TREAT. Either way, she has the biology leaving her exquisitely sensitive to a myriad of stressors both from inside and outside her own body, which has to be treated in a multi-faceted manner.

It is complicated, isn't it. My daughter got PTSD from her nightmares and other hallucinatory symptoms. She still has some residual problems with that, but not much.

We had said frequently that in our opinion, some of her "psychosis" seemed actually REM (nightmares) that wouldn't stop even when she awoke. It wasn't until she was 16 that a new GP referred her for a sleep study and she was found to have Narcolepsy. She actually was labeled with 4 sleep disorders.

Anyway, some of the sleep disorders when she was younger were diagnosed with a "mental" diagnosis of "depression" and her antidepressant kept being raised. She also kept having something that looked like absence seizures but the EEG was negative (which does not rule OUT the seizures), and the teachers kept pushing that it was "ADD" without the hyperactivity... and finally the psychiatrist concurred and put her on a stimulant on top of almost max dose of SSRI... and BAM.... she got the "schizoaffective". The ADD was a misdiagnosis, and it turns out that the depression she initially had was most likely the endocrine problems she had, and the later episodes they insisted were "depression" turned out to be a sleep disorder. After being put on an antiseizure medication for her migraines, she has zero signs of the absence seizure stuff. What is funny is that once the kid gets a "mental" diagnosis, seems like everything gets interpreted through that filter. Thus sleep disorder = depression, absence seizures = catatonia, narcolepsy=schizoaffective psychosis, several low hormones=mood disorder and med side-effects, and on and on. It was like a horrible tragedy of diagnostic errors because "mental" diagnoses are so simple - look at a symptom and just call it "mental" - no testing required. I listed some of these errors here: Musings on “Medical Mysteries”.

Like you and the Elavil, it took years to get her back to a semblance of the functioning before she was given the wrong psychotropic meds. Then we had the years of untreated underlying biology/medical problems to deal with. We will be mopping up the mess left from untreated stuff for years to come. Like some of them caused osteoporosis and although that is being addressed, she now has a spine problem. THANK YOU DOCTORS (sarcasm!!!) Anyway, that's why I sometimes bitterly talk about her "mental" stuff "causing" osteoporosis. That is one heck of a strong mind the child had to cause herself osteoporosis!

And yet throughout, the doctors who knew her said she was psychologically (ie"mentally") healthy. It was just that the specialists she was sent to for the medical issues would just dismiss her with total arrogance because it was "mental" ! She says now, looking back on her life, all her "trauma" in her childhood was from DOCTORS... both the way the doctors treated her, and the way the doctors DIDN'T treat her! So you know that stuff about the "low stress" our kids need? Well - because the pediatric neurologists and endocrinologists abrogated their jobs, dismissing her complaints as "mental" - THEY are the ones that caused her STRESS and TRAUMA!

I was talking to a Licenced Clinical Social Worker the other day who kept referring to schizophrenia/schizoaffective disorder as being a "thought disorder". I kept asking her what the heck she was talking about. It is a psychotic disorder. My daughter has NEVER had a "thought disorder". She said that if my daughter has no "thought disorder" then it cannot be schizoaffective. I said, that no, she has no thought disorder AND she DOES have schizoaffective because she DID meet the DSM-IV criteria for it. And it doesn't say in the DSM-IV that they have to have a psychological problem nor a problem with their thinking in order to be diagnosed with schizoaffective. They CAN have those problems, but not necessarily. There are plenty of people on these boards that have these diagnoses that are intelligent, analytical and thoughtful. They do not have a "thought disorder". What they had was "psychosis". And what is "psychosis" but believing what our senses tell us to be true. Sounds quite rational, actually. My own mother had "schizophrenia". Even untreated for years, she was quite intelligent, and rational--given the data she perceived from her senses. My daughter was born with that same underlying biology. That's how I came to realize that whatever it is that is being called "schizophrenia" in my family tree is a very real (not "mental"), physical problem that is affecting the brain.

Anyway, at this point, my daughter IS on some neuroleptic medication still. BUT - she had these same symptoms BEFORE the "schizoaffective". Schizoaffective is just a label for a partial set of symptoms. She has the biology she has... it has just been a monumental feat to sort out what is what. And we have NOT yet been able to treat all her underlying problems. We can't even keep her thyroid levels up after YEARS of treating because her endocrine problems are so complex involving the hypothalamic-pituitary-adrenal axis.

Oh well... like you said... what is this "schizophrenia" anyway? We really don't know. I just read how a rare microdeletion or microreplication in one tiny gene can be involved in about 1% of the cases of "autism", but it apparently can lead to a tiny percentage cases of PDD or cases of schizophrenia ( http://content.nejm.org/cgi/content/full/NEJMoa075974 ) . I know that isn't what is in my family because those are generally de noveau cases -- spontaneous errors/mutations that generally don't get passed down in families. How many thousand other ways to get this label? How complicated?

No wonder we feel like we are researchers for the treatment our own kids. Researchers with a data set of ONE.

-Jeanie

Hi Jeanie,

My understanding (from talking with many schizophrenia and neuroscience researchers) is different from yours. It is that psychosis, schizophrenia and schizo-affective disorders) are all psychotic disorders and psychotic disorders are (by definition) a loss of contact with reality (see the wiki entry here: http://en.wikipedia.org/wiki/Psychosis

By definition - if you've lost contact with reality - you are not thinking clearly, you can't interpret the world around you in a way that is consistent with the way rest of the world thinks it is - thus it is a thought disorder. The problem isn't with the "senses" - there's no evidence that there is anything wrong with the sensing ability in people with mental illness - rather it is the problem with the interpretation of what the senses is telling them - again - interpretation is "thinking", so if you can't interpret the world around you correctly - you have a thought disorder. This is consistent with everything I've ever heard from schizophrenia, psychology and neuroscience researchers that I've talked to in the past decade (hundreds of researchers). You can't have a psychotic disorder and be considered "mentally healthy" by definition. I know that you believe differently - but I just want to make clear for anyone else reading this - that your understanding of mental illness, psychotic disorders, and schizophrenia / schizo-affective disorder is very different from what all the experts tell me.

Schizo-affective disorder is a situation where a person has the thought disorder component of schizophrenia, combined with the affective (mood) disorder aspect of bipolar disorder (depression or mania) - if the person doesn't have the thought disorder (psychosis) part of the symptomatology then their diagnosis would simply be bipolar disorder. Researchers are now saying that there is a continuum between schizophrenia and bipolar disorder - these aren't discrete diagnoses.

For people looking to understand the current state of the science in the field of neuroscience, psychology and psychiatry - I recommend they read the link below. The "bio-psycho-social" model of mental illness is the dominant approach that is taught in all the world's leading medical schools based on the most current research. Some people like to believe that there is a clear distinction between mental and biological disorders (when we talk about mental illness) - but when it comes to mental illness that view has been made obsolete about a decade ago and it is now known that biology impacts mental function and equally true is that mental function (psychology) impacts and changes biology. The psychological and social environment you grow up in changes your brain development down to the cells and genes. This new area of science is called social neuroscience - you can learn more about it below (see second link).

http://www.schizophrenia.com/sznews/archives/004311.html

http://www.schizophrenia.com/sznews/archives/004494.html

If I saw monsters and heard things, I'd be pretty freaked out. It may not be with the eyes and ears, but it is still what we see and hear i.e. what we sense. The senses are only what the brain receives and interprets anyway. My daughter is very mentally healthy, or else she could not have weathered what she has weathered, intact.


There are many ways a psychologically healthy person can still lose contact with reality. And doctors such as Dr. Henry Nasrallah ("Is schizophrenia a psychotic disorder?: Psychosis may be a secondary symptom that emerges as a consequence of cognitive impairment." http://www.currentpsychiatry.com/article_pages.asp?AID=5707) have questioned whether schizophrenia really should be considered a "psychotic disorder".

Even as child, my daughter brought up the fact that we call hallucinating while having a severe fever "delirium", and we call hallucinating with migraines, "aura". We call many kinds of hallucinations different things, and yet we don't call them psychotic unless we don't know which things our brain says we see and hear are hallucinations and which are real. But even the delirium from the high fever is not called psychosis and that, too, seems real at the time.

Seems like she could think about her psychosis and hallucinations very analytically and rationally.

She is quite mentally healthy because she has no major psychological problems (some residual ones from trauma from doctors and symptoms), is mature, socially well connected, etc. The psychosis is just like having the delirium. It is from a sickness. Is it a loss of touch with reality? Yes. Just like when I have a very high fever, or during a nightmare. That does not make me mentally unhealthy just because I have gotten delirious or have nightmares. Most of the time she has residual hallucinations and ignores them, and in fact has grown up with them, the same as a person with tinnitus or vitrious floaters.

If a person has a severe abnormality in the brain as so many of the childhood-onset children have, it does not mean that the resulting malfunction of the brain is any more psychological than autism or deterioration from alzheimer's.

When a person becomes psychotic from low thyroid - is it psychological? NO. IT is REAL. It is a MEDICAL problem. They can be mentally HEALTHY and still get psychosis. Mental (psychological) health will not prevent that psychosis.

Maybe it is what you consider "mental' that is different from us. When we go to a doctor and he says our complaint is "mental" it means it is NOT REAL - it is NOT PHYSICAL, and it is psychological. Childhood-onset schizophrenia is a very REAL, very PHYSICAL, NON-psychological syndrome that affects the PHYSICAL organ - the brain. Not only that, it is associated with a lot of auto-immune problems. Even the fact that fish oild can help the brain in some children, from deteriorating to the point the symptoms get labeled "schizophrenia" shows that this is not psychological. It is physical.

We are talking about REAL children here - not someone's subject matter, and not someone's hypothesis or conjecture about some general syndrome without any idea about our own child's specific situation. There are multitude of ways for a person with mental health to still lose touch with reality without suddenly getting psychological problems that is causing them - dehydration, fever, REM, migraines, narcolepsy, hyperthyroid, hypothyroid, brain damage, nutritional deficiencies, parasitic infection, Wilson's, etc.

There is a reason that NIMH refers to childhood-onset schizophrenia the same way they refer to autism - as a neurodevelopmental disorder. There is a huge genetic component, and unfortunately, also often severe brain abnormality. BRAIN. That is a REAL physical organ. The Celiac many of these children have is a REAL PHYSICAL problem with food and their intestines. The migraines cause REAL changes in their brains.

When you say you "understand" this differently from us - you are absolutely right. You have no idea about the specifics of our own child's situation and the real-life suffering. You do NOT understand that a child without any psychological damage can have severe sleep problems, intestinal problems, and brain problems and the effect that THOSE problems can then have mentally on the child and their family. You're right - you cannot understand the hell that it is for a family to seek proper medical treatment for a young child and be told it isn't real - that things are "just mental" and not get medical treatment until the child has osteoporosis.

Your "understanding" may be academic. Our understanding is personal and REAL. My daughter's understanding of her own biology is also personal and REAL.

She is 20, with friends, a fiance, two associate's degree, family that loves her, friends that laugh with her. Yes, I would say she is mentally healthy. And can she hallucinate? Yes.... and as she has pointed out - it is less bothersome than some of the things that happen to her with her migraine. Can she become psychotic? Easily. Give her a corticosteroid and it won't take long. That reaction doesn't mean she is mentally unhealthy.

You essentially are saying that everyone with the diagnosis of schizophrenia or schizoaffective disorder is mentally unhealthy?

You bring up an excellent point... SOME DAY, won't it be nice when all the mentally healthy people with these diagnoses can finally get diagnosed with something ELSE because then the doctors will finally know what is medically wrong with them... unless you are saying that even people who get psychotic from untreated hypothyroid are not mentally healthy because otherwise they would not have become psychotic?

You can make a valid argument like the licensed clinical social worker that my daughter does not really have schizoaffective. And I guess neither do any of the people I know, and no one in my family really has schizophrenia. And you know what? I would agree with you. They DON'T... not if schizophrenia is a psychological illness. But so far, unfortunately, that's the only diagnostic label for them because it is a label that can be given without knowing medically what is wrong with them.

So that's why I am here asking my questions, and talking with other parents... because this IS the label my daughter, mother, mother-in-law and some more distant relatives got. It just isn't the kind from a psychological etiology. It is one of the "other" kinds. Like from viral combined with the wrong meds they gave my daughter for physical problems they were calling "mental". Like her low thyroid which they didn't run the right test for, and her narcolepsy and a handful of other things that were wrong and they kept calling "mental". How ironic, right? We put the kid in therapy for problems therapy could not fix, and gave her psychotropic meds for problems that needed dietary changes, supplements and hormones. Then my mentally healthy child's brain essentially "broke"... and it is her mental HEALTH that allowed her to overcome the trauma from the symptoms.

So you are right - YOUR understanding is probably quite different from our own experiences down here in the trenches.

Respectfully,
Jeanie - A mother of a relatively mentally healthy young adult with childhood-onset "schizoaffective"

Jeanie, This is a very thoughtful question. From our limited experience, autism is a general medical condition of unknown cause. The diagnosis of schizophrenia can still be added on top of it as another general medical condition of unknown cause. For a long time alzheimer's was a general medical condition of unknown cause. I therefore conclude that the "general medical condition" that would prevent the diagnosis of schizophrenia would only be if 3 criteria were met: The condition has a name, is treatable and is known that the symptoms of schizophrenia was caused by it. Without those 3 conditions, the diagnosis could still be schizophrenia.
For example, if my child's autism could be medically treated and the psychotic symptoms were then eliminated, then the diagnosis would change back from schizophrenia to autism. If however the autism simply contributed to the formation of schizophrenia and the autism were treated but the schizophrenia remained, then the two diagnoses would persist.
Here is another simpler example of 2 intertwined medical diagnoses. A deep-seated chronic sinusitis can be initially triggered by an allergy followed by a secondary infection. Perhaps the allergy gets treated but the chronic sinusitis remains. It does not mean the person will always have the sinusitis, but it can be very difficult to resolve. I have a cat that will have the sinusitis for life and we can only manage the symptoms, we cannot cure it. He has a birth anomaly combined with an infection that managed to get deep into his bones or something.
From those examples, it would seem that if you can successfully treat the medical factors that contributed to the initial symptoms, your child can still have the diagnosis or not, depending on whether other factors contributing to the symptoms persist, which would then cause the symptoms to persist.

My wife wants you to know that she especially enjoyed your essay on "Musings about Medical Mysteries" (http://itsnotmental.blogspot.com/2007/12/musings-on-medical-mysteries.html) on your blog. She also is a fan of the TV show "House". My favorites are "Autism is not a Mental Illness" and the one about solving the puzzle of your daughter's problems.
One comment in general about your blog is that most people do not have the education level to understand it. I do not suggest that you water down your musings to suit the masses. You are welcome to use any of this as fodder for your blog as well.

I was taught that human beings have five senses. The experts who discuss the phenomenon of sensing believe that human beings have more like 20 or 30 senses instead of five senses. For example, we sense the passage of time. I want to confess that as near as I can figure, I sense the passage of time much differently than most chronically normal people.

As near as I can figure, my sensing of my world is abnormal. For example, everyone knows I am 5 feet and 11 inches tall. Sometimes my world appears to me as if I am eight feet tall, however.

Did you ever watch a schizophrenic eat? I go out to eat with schizophrenics all the time, and spills and drips are almost the norm. In fact, pizza is popular with schizophrenics precisely because one can eat it with the fingers, and unless it is terribly hot, most pizza stays in one piece from the plate to the mouth.

Many schizophrenic women on meds have large breasts, and many when you see them have food or food stains or both all over that part of their sweatshirt. For that matter, many schizophrenic males frequently have food in their beard. As near as I can figure, our food mess is caused by not only lack of coordination but also altered sense perception.

Jayster

That's an interesting observation Jayster. I am a terrible one for dripping/spilling things on my t shirts. Once my youngest grand daughter who was only five at the time looked at her mother very matter of factly and said' Grand dad's very messy i think we should buy him a bib don't you?
'

migraine auras, which i have, are not the same as hallucinations. they are not disabling in the way hallucinations are, and are not accompanied by delusions. schizophrenia hallucinatioins are really unique, because the person halucinates so often, and over such a long period of time, at least compared to other disorders. visual and aural disturbances from other disorders just are not as prominent or as complex, or present during such a completely unimpaired consciousness.

Mental health diagnoses often hange over time with adults as well as children. the underlying process changes with time, so the symptoms change. it may be that it's more a matter of emphasis and a slight adjustment of doses of medications - say, if a person's diagnosis changes from schizophrenia to depression with psychotic features. Sometimes the diagnosis change is due to some very small technicality involved in the diagnosis, and while it sounds like a bunch of important words, the person's actual situation and needs changes not at all.

Sometimes it's a little wierd, such as - welll - about 70% of schizophrenics appear to have 'episodic' symptoms. Symptoms sometimes go entirely away - for 2 years, 3 years, 10 years. Sometimes people have psychotic periods, and then go thru long periods where they onlly have negative symptoms....or have nothing at all. So if a person gets diagnosed with some lesser disorder during a period when the symptoms just are going through a natural cycle....they may get diagnosed with 'schizoid personality disorder, borderline personaity disorder, anxiety disorder, or paranoid disorder...when really alll that is happening is just some very common natural variation in their illness.

And because our health care is often fragmented these days (if i change jobs my old doctor may not even be a member of my health care network, say) you often get into situations where you have a new doctor and he wants to redo everything and make his own detemrination what's going on - if he just happens to see the person when their illlness is changing, he can get in some awkward situations if he doesn't take the persons history very seriously.

A psychiatrist is supposed to come up with the simplest, best fitting diagnosis possible, and the diagnosis is supposed to be a tool that helps the person.

for example, if a schizophrenic has symptoms of OCD, he usually wouldn't get a separate diagnosis of OCD, because OCD-like symptoms are a very common part of schizophrenia.

when what he sess changes, the doctor has no choice but to 'call it as he sees it'. For example a schizophrenic may start out not looking like a schizophrenic at all - with only one obvious symptom - depression, or mania. sometimes children with aspergers or autism will start having symptoms of schizophrenia later in life. sometimes, people will start out with symptoms only of schizophrenia - and start to occillate between periods of ONLY mood symptoms and then ONLY schizophrenia symptoms (schizoaffective disorder).

Schizophrenia is called 'neurodevelopmental' because evidence points to a beginning well before birth, when the nerves in the brain are first developing, very early on in the pregnancy. genes that control how the brain develops are one large group of genes being examined by rsearchers. these genes activate long before a person is born.

For years, people weren't aware that there were many changes in the person long before an mental health condition showed itself. Researchers have collected baby and toddler pictures and videos of children later diagnosed with COS and of people diagnosed in adulthood....the results are really amazing. there are problems with muscle tone, crawling, reaching, grasping from a very early age.

cantor also saw the low muscle tone at birth which would then improve and the children would have very normal posture and muscle tone, and then, oddly, when they started to get childhood onset schizophrenia their muscle tone would change, again, and they would slouch and lean on people and develop poor posture.

in a way it's a shame people no longer read alot of the much old books about schizophrenia and autism. back when there were no treatments, people got very sick and all one could do was make a safe place for them and try to keep them comfortable....and observe...watch and watch and watch...as they got sicker and sicker. it was very sad in many ways, but they learned a great deal about these illnesses actuallly.

i had read about 'Bender Schizophrenics' with such lax muscle tone that they could lay backwards over a person's arm, bent double. and one day i brought my homeless friend a sandwich, and my mouth just dropped open. he was draped across the park bench like he didn't have a single bone in his body. a bender schizophrenic. but the point is - there's so much more going on physiologicallly long before the 'mental health' symptonms are obvious.

Edited by: slc2 on Jul 1, 2008 8:36 PM

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Edited by: slc2 on Jul 1, 2008 8:57 PM

That is a possible explanation. It's certainly one i wouldn't discount though it is also possible that a person's symptom profile may change in such a way that a change
of dx may be more well defined than just a 'natural variation' in their illness ie schizophrenia to bipolar rather than schizophrenia but going through a 'bipolar phase'.

It's a subject i am quite interested in given my diagnostic changes over the years from
schizophrenia to schizophrenia with disorder of gender identity to chronic schizophrenia to schizoaffective mixed type/bipolar with the greater emphasis on the SA mixed to a situation where i am now Personality disorder NOS consisting off according to pdocs 'with emotional and explosive traits' 'consisting of sensitive and explosive traits' 'mainly consisting of sensitive,compulsive,emotional,unstable,and impulsive behaviour'.

The last comprehensive care plan (recent one's have been less so) described me as having long term problems with thinking and behaviour inc anxiety/depression/paranoid thinking /mood swings and isolation and difficulties with perception and planning.

I also think it is possible for a person to have had a schizophrenic(spectrum) illness and then not qualify for one but still have a degree of residual sub symptomatology.

In fact though i would have denied it at the time in retrospect i can see that i had patterns of behaviour that were quite 'schizophrenic' in nature.

For example the writing of strange poetry that i saw as 'meaningful' and feelings like this 'I believe that staff and patients are being kind to my face and laughing behind my back and often wish they'd say what they really felt.' I wonder if they are laughing at me and tend to be upset by the slightest strange look on their faces'.

Now 'psychotic like' moments tend to be short lived and triggered by stress ie i become irrational/paranoia ramps up/the more worked up the more all over the place i get/depersonalisation-derealisation can occur. Aside from that over valued ideas can occur outside of stress(I say over valued as i am aware that i am having strange thoughts hence that rather than strictly 'delusional' )

Perhaps the most enduring problem across dxes has been that of interacting with others in terms of initiating conversations/taking a proactive position in them/making small talk and indeed cognitive problems of an executive functioning nature.

Just a quick update. Addressing sleep issues made her not need the last bit of neuroleptic/antipsychotic which apparently was needed essentially to knock her out. She's been off it entirely for well over a year. Still no return of schizoaffective symptoms.

As far as what it gets called... shrug. She has some medical issues and sees several medical doctors, with the wonderful GP acting like a conductor in a medical symphony. She is retaining the psychiatrist for now until she has the accommodations she requires at the University she is transferring to. She has no need of accommodations for schizoaffective, OCD, etc -- just for the same writing LD she always had.

The psychiatrist just figures that even though she had schizoaffective for 15 years, if she continues to not have the symptoms for a few more years just assume she no longer has it. Of course, from what I read, more hormonal imbalances can make it come back - like pregnancy and childbirth. Which she hopes will be a possibility. Ummm.... the children some day -- not the symptoms coming back. She is more concerned about having to come off the meds for sleep disorder during pregnancy!!

I guess our story and my book will have a better ending than I envisioned years ago when I began it. Some of her medical doctors have reviewed it, and one may write the foreword. Of course, he is of the same opinion--it's not mental... It's medical. But he is also of the opinion it is not "schizoaffective" because we shouldn't call medical problems by labels we consider non-medical. Like I say - to the 5 medical doctors taking care of her, she has medical problems. To the psychiatrist she has a DSM-IV diagnosis which is caused by the underlying biological problems. But d'oh - she didn't have psychological problems to begin with - therefore they were biological.

Others have pointed out that there ARE medical labels for unknown illnesses affecting brain function when it is not mental (ie not psychological/behavioral) -- encephalopathy. What is weird is then it would be covered by insurance as medical rather than as mental. I find it all very confusing... which is why I just shrug. All that debate will be left to others. She had SSI for a while and we did it without mentioning a "mental" diagnosis -- just "medical" and stating resulting symptoms and disabilities from them. Sleep had been such an issue! Couple that with gluten and hormone problems... wow! Add allergies & nutrition & inflammation & mitochondrial function to the mix...

Anyway, the best to all you other parents. We keep up the fight.

Jeanie