I’m feeling rather nervous about my son retrialing Clozaril. Reasons being that he had seizures which can be controlled with other meds, the vomiting, and the biggie that he ended stopping abruptly was arangulycytosis.
He has 2 psychiatrists. One is his prescribing and the other is consulting through an early psychosis program. The consulting Dr. consults with Dr. Cameron Carter a Shizophrenia expert and researcher at UC Davis. His prescribing Dr. isn’t as experienced as the others but is so attentive and I like him alot. He is a great listener and is open to other suggestions and communicates with the other psych.
Their recommendation after going over things is to start Clozaril again way more slowly and to go up to maybe no more than 150mg for maybe up to a year. The Thorazine calms things down some but he is not any less psychotic. I feel it would be foolish not to take the recommendation of these DRs but I am really nervous about the side affects. The Dr. also suggested us looking into Antroposcopic medicine(I’m sure I spelled that wrong). She said she wouldn’t suggest it to any other patient. It’s hard to hear because I think he is everyone’s worse off patient and they don’t really know what to do next. I do appreciate them not giving up though.
In other news, we visited a gym today that has hydrotherapy water tables and massage chairs. He LOVED the hydrotherapy water table. I think we will join just for that. I bet it helps with the tight muscles that can occur from the APs. There are also Total Body enhancement machines that as described sounds basically like a whole body shake weight. I’m not sure of its claimed benefits such as toning but I think these things will help him with needed sensory stimulation as he has Autism too. He loves to swing also and sometimes we will go to the park and he will swing when no children are around. My parents have a cabin in the mountains and they have a swing that’s perfect for adults. We went over the weekend and he swung quite a bit.
I’ll be watching this thread. My son is back in the hospital as of an hour ago. He’s halfway through the 28 days on a 234 mg Invega shot, stopped sleeping again, and is about as psychotic as I’ve seen him.
I don’t know what the plan is yet, but I’m thinking the Invega shot needs to go & maybe Clozaril is what they’ll try next.
He got sick enough to start refusing his oral meds again - yesterday, he thanked me for giving them to him. Today, he flat out refused to take them & wouldn’t even accept an Ativan in the ER. He has no insight, so the sicker he gets, the more sure he is that he doesn’t need anything, so the switching makes me nervous for a lot of reasons, but he might as well not be taking anything right now.
I’m sorry to hear he is so unwell. My son has also taken Invega as the injection, which wore off. He later took it orally and had a good period of relative stability. My son also has no insight but he is distracted enough to just take what I give him. We had to go to lab every week on the Clozaril and was prescribed only enough medication to last for the week. The lab results had to be posted before they released the med. After awhile it is monthly. I hope they come up with a plan that makes sense and is helpful for your son. Please take care, hugs to you.
It’s always nerve-wracking to switch meds or dosages but I hope your son does well on the Clozaril if they decide to try it. He sounds like he’s really struggling and trying something else wouldn’t hurt. How is he today?
Today is pretty much the same. He’s mostly pacing and talking to himself. He keeps spitting and I’m not quite sure what that’s about. He goes from laughing and talking to the voices to looking real concerned/disturbed and silent.Thank you for asking
Per the drooling, some of my son’s past meds gave him dry mouth, which is really, really bad for your teeth.
He would use Biotene to combat it & that stuff is great if anyone ever has a need to use it.
Just wanted to mention as bad as drooling is, I would hope it’s not as bad healthwise as drymouth.
I have very active saliva glands naturally - sometimes, I’ve actually sprayed (like a little mini fountain) the dentists - and those little pad things never seem to be enough. And, I’ve woken up plenty of nights with drool on my pillow. I don’t know any different, so I guess I’m just in the habit of swallowing a lot.
Good point. Drooling is probably better for the teeth than dry mouth. My boy has lost a tooth due to not able to do hygiene combined with dry mouth and not able to sit long enough to complete a root canal. After several attempts the tooth broke and needed to be extracted. We got him an implant which is really expensive. My boy was prescribed atropine drops for under the tongue for the drooling which helped quite a bit. The drooling was so much that when he slept and snored it sounded like a chainsaw because it pooled in there and rattled around with each breath. My son will probably start on it again next week at his appointment.
About 2 years ago, we started working on it, and our family dentist recommended a sedation dentist.
They gave him Halcion which didn’t knock him out like it does other people, but it sedated him enough that they could work on him for 4 hours and get 1/3 of his work done, which included a root canal. However, he “heard” the sedation dentist say something about him, so we didn’t take him back.
It was expensive though because our dental coverage wouldn’t cover the sedation.
This time, I’m going to try to find a dentist who is comfortable doing the regular cavities one or two at a time.
For any root canals, our family dentist’s husband is an endodontist. That’s a root canal specialist.
He’ is really laid back & can do a root canal faster than you’d every believe. I’ve had root canals done by other people when I was young, and I can honestly say I would never let anyone else do one again.
He takes something that usually takes hours & gets it done in about 45 minutes.
I’ve had an implant done myself & need to have one more done. They are expensive, but pretty great if you need one.
That’s great you have speedy endodontist. I think that was part of the problem for us. They were so kind and gentle but taking forever. Now he is on a every 3 month cleaning and a prescription toothpaste. He never remembers to do any hygiene on his own except wash hands. He needs physical prompts such as handing him clothes and directing toward shower and putting toothpaste on the toothbrush and handing it to him.
He takes a shower, followed by soaking in the bath. He’ll put on fresh clothes and shave either his head or his beard.
If he’s only doing so-so, he might put his old clothes back on.
If he’s doing really good, he’ll actually use soap when he showers & brush his teeth.
When he’s bad, it might be a week or two before he’d take a shower without me insisting - and reminding him to use soap.
When he first started shaving his head, I was kind of in shock, but I like it now. He’s got a nicely shaped head so he can pull it off & he looks much neater that way than when he hand longer hair & wouldn’t use shampoo.
He’s got the weirdest knack of taking a bath or shower without using soap or even getting his hair wet sometimes.
