Oh, I am so sorry for your loss! How horrible that he lost his life because of negligence! My heart goes out to you!
Great! Make sure all team members are involved and communicating. There are many dangerous side effects of these meds. Be especially on the alert for a psychiatrist prescribing two or more meds. It is called poly-pharmacy and very dangerous. Drug interactions have not been fully tested and can cause harm/sudden death.
Thank you for your thoughtful and kind comments. You are so correct. Unfortunately, we have to on the alert for the incompetent psychiatrists who can cause harm or worse, death. It is one thing to make a human error, but when you totally disregard warning signs on the prescribing instructions, plus FDA warnings about the dangerous side effects of meds you are prescribing is reckless and unconscionable. So please everyone out there, get a team on your side. Do not trust the psychiatrist. Include the personal care physician, nurse, pharmacist, counselor and other family members.
3 Likes
Good advice. Thank you.
1 Like
Mom 2
In your email to me, you mentioned the psychiatrist did not even weigh your son. Wow! Thatās bad. Be ready to take your son for a second opinion. There are university hospitals that have a psychiatric staff. See if there is one near you. For Example, go to Johns Hopkins and check out there psch care and treatment department. They offer in and out patient services for a full evaluation and recommended treatment plan. I wish I knew of this when my Mark was livingā¦I would have taken him there instead of trusting his psychiatrist. If I only knew then what I know now.
1 Like
My son has been seeing the same psychiatrist for several years. He does not prescribe multiple APs. He thinks there is not enough evidence that it provides acceptable results.
2 Likes
Good for him. He must have read the following, or something similar about poly-pharmacy.
Kevin Pho, MD, an American physician of internal medicine, and founder/editor KevinMD.com., a website visited by medical professionals states this: āPolypharmacy has never been, and will never be, systematically studied in controlled clinical trialsā¦ā¦ It is impossibly impractical to do studies comparing multiple drug regimen, because these would require too many cells and too big a sample size to test all the possible permutations. The result: Polypharmacy is rarely ever evidence-based, almost always a shot in the dark.ā
2 Likes
Stan, I look at the sudden switching of these major APs as a form of polypharmacy as well, do you? Not once has his doctor said, lets titration me this med to a new one, just bam new script. I know Iām not a doctor.
Mom2
I, too am not a psychiatrist/psychologist. My Ph.D. is in education. But I do a lot of research, especially since my son died, and I have over 25 years of dealing with a flawed mental health system. Selecting meds is a crap shoot. Not evidenced based. You see the psychiatrist for 15-20 minutes. āTell me the symptomsā¦ Here, try this since the other med is not working:, OK letās increase the dose level. Or, letās also add another med.ā And they try to say psychiatry is a medical science. Really? Do not trust the psychiatrist. there is much information on the internet. Unfortunately, we must take a more active role in the treatment of our loved ones. And if you have any doubts, get a second opinion. I have written elsewhere there are university hospitals which have psych departments and offer in and out-patient services and give a complete evaluation, behaviorial and physical.
4 Likes
We are now at 9 months being on clozapeneā¦blood draw every two weeks nowā¦Drās appointment every 2 monthsā¦have seen much improvementā¦ All symptoms have decreased quit a bitā¦we have a full team available to us nurses, social workers etcā¦ like a hospital on wheelsā¦visit by team twice a week to our home with phone calls on off daysā¦
As my sons SDM (substitute decision maker no changes
to my sons meds unless I give approval even if my son disagreesā¦it has been determined that my son cannot make decisions regarding his health so I am the one to make all decisions even on who is Dr will beā¦the treatment order is reviewed every 6 months. This has been in effect for about three years now and without this process we would not be where we are todayā¦
Without this community effort we as a family would not have been able to copeā¦so gratefulā¦ There are many on a waiting list for this teamā¦in the end it is hope that gets us all through this. .
6 Likes
I agree, my son and I would not be where we are today if I had not been granted guardianship. This is the first holiday season in several years that my son is participating in and that we will actually get to enjoy.
4 Likes
I am so happy to hear about your sonās improvement, and the team you have in place, my best to you in 2018.
1 Like
When you say slow acting, how long does it take to show its full affect?
Hiā¦With Clozapine it can take up to a year or more to see the full affects; unlike the usual anti - psychotic drugs that show results within 6 to 8, weeksā¦
My FtF teacher said that her son was still continuing to improve and heād been on Clozapine for 8 years.
@searchingparent I saw the most results within the first full year, as far as the voices and visions leaving and since then there has been steady very small improvements year after year, itās been almost 8 years.He still has the negative affects of lacking in self direction and wanting to isolate but we can work with that since the worst of the disease is not hampering him.
2 Likes
These are interesting observations. My son has been on clozapine almost 2 years. The first year he made it almost 11 months without a hospital admission. It has been over a year since that one.
He is taking very baby steps toward some socialization.
4 Likes
That is great news @Vallpen I am so glad to hear it. I was thinking the other day that my son was doing some small things that he would never do in the past yearsā¦ like the other day he actually listened to my argument when I disagreed with him on somethingā¦that never happened beforeā¦it was like a light went on and he saw the logicā¦and he also took my advice on healing a wound on his face, (using warm soaks and ointment) and that is another thing he would have never done beforeā¦he would have ignored me until I took him to the doctor and the doctor made him do whatever to heal itā¦I donāt know if I can say itās the clozapine that is improving these things or if it is a kind of ālatent maturityā --I do recall his doctor once saying that sz can stunt maturity progression at whatever age the disease begins and his thoughts were that they can still mature with stability, but at a slower rate.
3 Likes
Hi. My son was just put on Clozapine this morning. Thank you for all the information and personal experiences that have been given. My son is 36 and we have been dealing with this for 10 years. He is now in the state hospital and has not responded to other drugs. Several used to worked but then stopped. So we have many concerns. We have been considering some type of residential home but I dont think he would get the care he gets at home. If this medication can control his psychosis which has caused him to become confused and violent, I think we can deal with it. All of you sound like such wonderful parents. I lost my daughter at 40 but this illness with my son has been the hardest to deal with because I didnāt feel I had any control. Iām so glad to have found this group to help us through the side effects of this new medication.
6 Likes
My heart goes out to you and your family. I have high hopes for patients using clozapine based on my own sonās experiences, he started on it about 8 years ago and he is 33 now. It worked well but takes a long time to reach itās full potential. It took about 6 months to see a noticeable decrease in voices and hallucinations and by one year all of those kinds of symptoms were gone. Delusions gradually diminished and some more minor (less harmful ones) still remain. The first year he slept a LOTā¦often more than 12+ hours a day. He ate sporadically but ate a lot at one sitting and gained a lot of weight, his main side effect was drooling at night but 2 mg Cogentin helped decrease thatā¦
I agree that your son will get better care with you. You have to do what is right for you and your son and that varies from family to family and diagnosis to diagnosis. I know for my son-- I live alone with him and I went on disability in 2011 due to health complications of my own so being here full time with him afforded me a rare and unique opportunity to focus on him and observing what made him better (or worse) day to day. I made sure our home was quiet, organized, simplified, and I kept stress to almost zeroā¦as for his responsibilities. He started out 8 years ago with zeroā¦he could barely do anything at all, shower, make a meal, do a chore, converse, interact, exercise, shop, he just slept, smoked, ate, and sat and stared or talked jibberish. Today he has personality again, he showers twice a week, changes socks and underwear daily. Keeps his room spotless, helps with laundry, trash, dishes, all chores really, he has favorite shows, goes to the gym pretty often, usually with me but occasionally on his own, he can go on a short shopping trip nearby. We can laugh and talk and overall get along well, I can even leave him alone for a couple of days at a time and he does well with thatā¦if you told me 8 years ago this would be the outcome I wouldnāt have believed it.
I am pleased with how far he has come. He still isolates, refuses friendships (outside of me I guess) he still gets confused if he does too much in one day. He is forgetful and easily stressed. He cannot handle an argument at all. He doesnāt like strangers and avoids them. Still he is my son and I am grateful to have a working relationship with him. I am not sure things would have ended this well if I had kept struggling to work while I was sick and leaving him alone 8 hours a day or if I had to juggle other relationships at the same time in the same home. I tried group homes etcā¦and they ended terribly.
I am so very sorry that you lost your dear daughter and that your son still has such a struggle. I hope things begin to look up for him with the new medication and I am glad you are here to share your story. I hope my story helps a little and feel free to ask anything you want ā¦while everyone is different in their response to medications sometimes it still helps to hear about othersā experiences along the way.
8 Likes