Nothing Is What It Seems – Part Two

If you didn’t read part one, click here.

In 55 minutes, the reality we’ve been living in was questioned.  The prognosis we’d been operating under was debated. The fate of Tim’s future quality of life was mulled over.  This was all the result of one question posed by the doctor.

If Tim’s cognitive issues are organic – from birth – is it possible that the psychosis and behavioral issues are a result of seizures, and NOT Schizophrenia?

We discussed several studies (and here) that show persons with cognitive issues and psychosis often have seizure related disorders as well.  The doctor told me several things he’d learned over his 40 years in psychiatry:

  • Persons with Schizophrenia / Schizoaffective don’t typically have cognitive issues
  • Persons with psychosis where the hallucinations and paranoia are mostly around self-preservation – they report the voices tell them to run away or hit others or injure others that mean them harm
  • Persons with Schizophrenia / Schizoaffective don’t usually care about pleasing other people
  • It is not uncommon for persons with TBI or “organic” cognitive disabilities to have hallucinations and delusions, but most are rooted in seizure disorders
If you take those issues and compare them to Tim, Tim doesn’t fit the “typical” person with Schizophrenia.  He does have cognitive issues. His latest IQ testing pegs him at 62. His hallucinations and paranoia are mostly centered around self-preservation. He has an overwhelming desire to please.  He’s never had an EEG.  And, considering what we’ve discovered about our daughter over the past few months since she’s been treated for a frontal lobe seizure disorder, I understand how seizures can cause behavioral issues because I’ve seen her improvement in the few months since she began treatment (you can read my blog post on her transition from RAD to Seizure Disorder later this month here).
Now, the doctor didn’t have all of Tim’s history, and some things about Tim that I shared with him made him want to do more research.  Like the fact that Tim’s IQ has dropped from 92 to 76 to 62 over a decade, or the fact that Tim’s delusions do, from time to time, seem to be more “classic,” like paranoia about war breaking out, his fear of water being poisonous  or thinking that the CIA is following him.  I do have to concede that, more often than not, when he reports what the voices say, it’s “they told me to run away,” or “I have to hit (name of classmate here).”  When he’s struggling he reports that they tell him he is bad and they have told him to harm himself, which is more “classic” Schizophrenia, but those are less common than the simple self-preservation commands he reports.  
This doctor also expressed his belief that Childhood Onset Schizophrenia is very, very, very (his emphasis) rare, if it exists at all.  He actually caught himself saying it doesn’t exist and modified, I’m sure, for my benefit. I agree it’s rare, but he said this multiple times, and I tend to write off doctors that say something that I’ve seen in other children with  my own eyes is next to impossible.  That is a strike against him.  But he does firmly believe in Childhood Onset Bipolar Disorder, and I find it fascinating he thinks one is possible but not the other.  But I digress.
He left me with two thoughts.  One, in the time he’s been a practicing psychiatrist, the advancement of what his field understands about mood, thought, and intellectual disorders has progressed by about – his words – a half inch.  There is so much that we still don’t know.  So second, because of that, it’s worth exploring other options that may make Tim’s prognosis for a happy and productive live improve.  He recommended we find a neurologist and get an EEG, to rule in or out any type of seizures.  And we’re in the process of doing just that.  Tom started to get his hopes up a bit over the weekend that Tim could have some sort of miraculous reversal of symptoms and have a better life.  I am playing the skeptic.  We’ve tried everything else we have been able to try, based on everything we know.  I don’t see why we shouldn’t explore this.

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  • TwisterB October 1, 2012 at 7:08 pm

    I've often wondered if catatonia is a co-morbid disease with schizophrenia because on it's own it doesn't really fit with the disorganized or paranoid subtypes. I also wonder sometimes if catatonia isn't a symptom of a whole bunch of different illnesses & that psychiatrists haven't figured that out yet.

    I'd be interested in seeing a study that grouped catatonia by EEG and MRI results, rather than DSM symptoms.

    At the very least after this you will know for certain whether Tim has seizures or not.

  • Bea, OT October 6, 2012 at 1:52 pm

    I am very curious on how this will turn out. It would be amazing if the diagnosis is correct.

  • Jeanine Griggs October 10, 2012 at 2:50 pm

    It's all the brain. Neurology and psychiatry should be in the same office. My daughter has all kinds of brain issues. She has something that walks and talks like bipolar disorder (she is 11 years old). She has something that walks and talks like "sensory seizures," also referred to as partial complex seizures. She has learning disabilities – starting out with a 115 IQ, which is now down to 92. She is depressed, angry, loaded with anxiety. My daughter's seizures are such that they are impossible to catch on an EEG. We have had many, and nothing ever shows. It is frustrating, but we finally found a neurologist who understands. Trust me, we went through a couple who thought the symptoms she was experiencing were all psychiatric. The psychiatrist insisted that she was having neurological symtoms. My research told me the same. Sadly, it did not matter that we finally found a doctor to confirm our suspicions. The medicines we use to treat her bipolar should help these seizures. I guess they do help, and the symptoms could be worse. So we trudge on, trying to get her the right help, the proper schooling (while fighting the district), and finding the proper cocktail of drugs to make her comfortable. I will be interested in reading your follow-up to this post. Best of luck to you and your son.

  • Anonymous November 11, 2012 at 12:29 pm

    Hi Chrisa,

    Have you had a chance to investigate this any further? It definitely is an intriguing theory.
    I think it's always very important to get a second opinion, and maybe a third or fourth, whenever you're dealing with any serious illness but maybe especially so with psychiatric illnesses where the diagnosis is so subjective. My mother was diagnosed as bi-polar by one doc but then another said that she is definitely not bi-polar but has Borderline Personality Disorder while a third said that there is nothing wrong with her at all (she's extremely manipulative and lies like it's a sport). All three obviously can't be right. It doesn't mean that any of the doctors (except for maybe the third idiot) are incompetent but they have different experiences and knowledge and can view the situation from a different angle. I recently took my dog to three different vets to find out why her fur is falling out and it wasn't until the third one that we got an accurate diagnosis. It's a rare disorder that the third vet had happened to learn about at a conference but that the other two had never heard of. Had we not gone to the third vet who had happened to have gone to that conference I'd still be treating my dog for the wrong thing.

    Maybe nothing will come of this doctor's idea and your son really just have classic early onset schizophrenia but what is the doctor is right? You would never have known about it if you'd never sought his opinion.

    (PS. I do disagree with the doctor that people with schizophrenia normally don't care about pleasing others though. That has definitely not been my experience.)


  • Mary Ann S, Pennsylvania December 5, 2012 at 3:09 am

    Hi Chrisa, What is so frustrating to me is why isn't an EEG, MRI, Thyroid testing etc on an automatic workup for any person admitted to a mental institution, especially if they have psychosis. Our Dr did order an EEG 1 month after psychosis started and it was negative. Now I read that only a sleep-deprivation EEG will make certain diagnoses. Unfortunately my son is 23 and he says there is nothing wrong with him (despite ongoing psychosis) and refuses to get further testing. We KNOW that brain changes take place in Sz. Why aren't MRI's done to document this in every patient?

  • Chrisa Hickey December 5, 2012 at 3:10 am

    We know why. Insurance won't pay for it . Stupid, but true.

  • Anonymous December 10, 2012 at 1:44 am

    Did you ever find out if there is anything to the doctor's suspicion of possible seizures?

  • Chrisa Hickey December 10, 2012 at 1:45 am

    The EEG is in a few weeks. I will definitely update when we get results! Thanks for asking.