Comments on: “Low-dose” Low-potency Neuroleptics: A story sent to APANA

By: wendi

wendi — Sun, 05 Jul 2009 09:21:46 +0000

Im glad you are doing this.I am not autistic but have had life threatening reactions to phenagren, reglan and inepsine.all three times my Drs either didnt have a clue what was going on or in one case gave me haldol and ativan which made the reaction far worse.please tell all you can because when this happens you cant ask for help.

By: Tammy

Tammy — Tue, 29 Aug 2006 21:27:08 +0000

I am so glad to have found this website. I had a severe reaction to Phenegren after a heart catherization. I went into a seizure type event, and when I got home I couldn’t form certain words. I take medication to block the effects. I can’t seem to get my life back, I stay so tired all the time. I wish I had know the effects of this drug. thanks for listening. Tammy

By: Carmen Yelle

Carmen Yelle — Wed, 16 Aug 2006 19:26:30 +0000

Let me begin by saying that I do not have autism, but I have had halluciniginic experiences with Phenegran (promethazine). I had food poisoning and they gave me an IV in the hospital with phenagren in it. It was a very scary experience. My mom and my boyfriend said I was just talking nonsense. I have always wondered if the nurse made a mistake and gave me too much in the IV, b/c I have been able to take a Phenegren pill, and not have these side effects. At one point, when the nurse was taking my blood, I thought she was a vampire and started freaking out, yanked the IV out, and tried to run out of the hospital. My mom and boyfriend had no idea what was going on in my head. It seemed so real though. I slept for 2 straight days after that.

By: J.P.

J.P. — Wed, 28 Jun 2006 14:06:31 +0000

Same thing is happening to my brother now. He went to the hospital for Cataonia, but I thought it was pretty obvious he was expereincing a kind of sensory overload. They gave him Zyrexa, and in less then a week he had the most severe dystonic reaction a person could have, he also had elevated creatine, so also nueroleptic malignant syndrome. I think he might have MSA now, because he really seems like he’s slowly dying. I can’t believe this is happening to him. ALll he needed was a quiet room, and instead they have maimed, and probably killed him because of that stupid nueroleptic. He suffers so much, but at least he’s home with me, where it is quiet and safe.

By: Anonymous

Anonymous — Fri, 17 Mar 2006 12:13:00 +0000

I was told to reduce my meds after being diagnosed with Aspergers, because where I live, ASDs are regarded as personality variants which should not be treated with toxic drugs.

I take stelazine and tried a very low dose for 18 months. There was no improvement in cognition or anything else, but a great deal of stress and turmoil. I concluded that for me, a low dose of a traditional neuroleptic does seem to help, where a high dose slowed me up and a very low dose or nothing left me very edgy.

I think you are not blanketly anti-drug, but I’m afraid some people (like the person who diagnosed me) read stuff like this and then decide no ‘autistic’ can ever benefit from neuroleptics.

tinted

By: Susan

Susan — Mon, 06 Feb 2006 03:56:00 +0000

“Put bluntly, autistic people are at higher than usual risk from these drugs, people with movement “disorders” including catatonia are at higher risk than usual from these drugs, no amount of “super-low dosages” makes them safe for a lot of us”
Yes, yes, yes. Actually, this was the first “symptom” of my son’s autism – an extreme reaction to Reglan (he was losing weight because of reflux) that immitated cerebral palsy. I was told it *couldn’t* be the Reglan, as it is out of the system in 24 hours.

All the doctors denied it was the Reglan until I took him to a specialist who said yes,it was a rare (but documented) Reglan response, and based on his Reglan response, keep an eye open for autism.

Well, guess what, it took 5 or 6 months for his writhing to subside, and that “evolved” into more typical autistic behaviors.

Why do doctors insist that all brains respond similarly to meds?

By: Jannalou

Jannalou — Fri, 03 Feb 2006 01:51:00 +0000

I question their use every single time anyone says they’re giving them to their child or considering giving them to their child. I am rarely listened to.

There are many other, better ways to “control” autistic individuals. Among them taking the time to figure out what’s causing the behaviour you want to control. The cause isn’t always obvious, and the answer is rarely found in “ignore it and it will go away” or “reward him when he doesn’t do it”.

But then…

…*you* already know that.