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.