Renee left a comment with a question I decided to answer here because I'm guessing this might be something other people are also wondering about. She asked: "Is there a problem with decreasing M's Haldol and then increasing it if the other symptoms are worse? I don't see the harm in trying something new, but then I'm not living this."
Basically Renee, that's what we are doing... cautiously decreasing the haldol, seeing if M can manage the decrease... but being ready to increase it again if things go downhill too much.
It's not as easy as it sounds though... Schizophrenia is (arguably) the most serious of the major mental illnesses, childhood schizophrenia tends to be more severe than sz that starts during adolescence or adulthood, and M has severe childhood schizophrenia. There are no medications left to try... we've tried them all (some several times!), trying to get him stable. Each medication he takes plays an important role in his stability and haldol is one of the most powerful of his meds. Unfortunately, unlike most people with sz, he's has continued to be symptomatic. So even a tiny decrease in one of his meds has potentially disastrous consequences...
The meds keep him fairly well connected to reality, and keeps the worst symptoms of his illness (hallucinations, delusions, paranoia) from taking over. If the symptoms get worse M is in danger. In the past he's tried to run onto a busy four-lane street (trying to get away from hallucinations that seemed very real and threatening) during an unstable time. I managed to grab him and stop him just before he ran into traffic. He's tried to get out of the car, traveling 55 mph on the highway, because he was hearing voices that told him too. He's hidden under a table, crying in fear and panic, truly believing that someone was coming into the house to kill him.
When the symptoms take over he's in danger, he's traumatized, and he's also in terrible pain. It's different from physical pain, but it's pain nonetheless. We could have him admitted into the psych unit if things get too bad, but there are almost no inpatient options for children who are both mentally ill and developmentally delayed... and he would still be suffering the pain and fear the symptoms bring, plus he'd be in an unfamiliar (but safe) environment.
So as I inch down the haldol, it's with an awareness that I'm playing with fire... I could make things much worse, trying to make things a little better.
Make sense?
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On a lighter note, for anyone waiting with baited breath to hear the latest exciting details of my refinishing project (drum roll please...)
I started stripping the roll top yesterday. The cubbies were driving me crazy (they are some kind of weird wood that refuses to let go of the paint!) so I decided to work on something else. Luckily the paint is coming off the roll top easily,
It's so exciting to see the beautiful wood coming out from under all that paint!
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