Responses to talk of suicide+physician referral for clozapine

My 29 year old daughter has struggled for 10 years with schizoaffective disorder, and at this point has pretty much been through all the antipsychotics with varying degrees of success, but always temporary. Her long time psychiatrist has recommended we try clozapine, however, unfortunately he doesn’t prescribe it. We have started the process with his only referral whose office has proven to be completely incompetent, and I am frantically trying to find another doctor to continue with. She has now been off her antipsychotic for a month in expectation of starting the clozapine, and as you can imagine, is in really bad shape. The talk of suicide is not new, this has been going on for years depending on how well her meds are working. I am always at a loss as to how to respond to her, and am hoping for your suggestions. No matter what I say, it can never be enough, I mean how do you tell your seriously ill child that life is worth living, and that it will get better, when in reality, it might not? Any help would be appreciated, and if anyone has a doctor they can recommend in Northern California who prescribes clozapine, I’d be so grateful if you would pass on that name. Many thanks…

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It’s a hard one. Someone told me their psychiatrist told them when they having suicidal thoughts, to remember it will pass. Sometimes it’s extremely hard to know what’s best to say.

Thank you…that is helpful. I’m sure I must’ve responded with that at some point, but in the search for more to say over the years I may not have said that recently…

Same here knowing what to say. Sometimes I wish had a manual. But this group is good to learn from.

Map of clozapine providers

There are a surprisingly few number of them.

Yes, I agree, it was an eye opener. Thank you so much…I am presently going down that list, unfortunately each lead I’ve had has led to a dead end so far-provider has moved, retired, too far from us, county doctor etc. Again, much appreciation for responding.

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Dr Po Wang in palo alto
Dr David Bresler in LA

Many, many thanks for both those names, I will follow up…

I live in Tennessee so cannot recommend any providers in your area but I do want to say that clozapine is known for helping with suicidal issues. I think it ls definitely something that could help tremendously to eliminate those thoughts once you can get her on it. Personally, I think it should be the first drug of choice for so many reasons but mostly because it works when nothing else does. We wasted valuable time while my child endured scrips of Latuda, Zyprexa, Abilify and Seroquel all the while causing cognitive damage. I think if we had started with Clozapine, his memory, ability to pay attention, etc would still be intact.

Rosie94, yes, 10 years of being hopeful with each new med and disappointed over and over again, while our loved ones are subjected to the multiple side effects that they have caused. My daughter has suffered so much cognitive loss as well. I realize Clozapine has multiple side effects as well. How has your son done with it?

He has done well. He has gained weight but has had no other problems with it and it does not carry the high risk of developing movement disorder (TD) like so many of the other meds. It has made him very sleepy but he has been on it consistently for about 3 years now and he told me just this week that he no longer feels sedated during the day like he used to feel. He works a 40 hour/week job and sometimes has to open the business in the morning and he’s never been late. He likes being able to sleep so well at night and he no longer appears to have any psychosis. We have come a long way. It was not always like this. The first few years were awful.

Being able to sleep at night would be a novelty for my daughter, I am glad to hear that your son is able to do that. And that he can work a full time job? That is amazing. I am concerned about the weight gain that seems to come along with the clozapine, because my daughter is already overweight from lack of exercise and the most recent antipsychotic she was on. Concerned, as body image has always been a stress trigger for her, so we will see. May I ask, did it take 3 years on the clozapine to get to the point where your son is now? Or did you see results sooner I hope?

It did not take 3 years for Clozapine to get him to this point. He has been working at this job for over 2 years. Once he was up to 500 mg, he started noticeably improving but he continues to improve in small ways over time. Also, current research recommends patients of Clozapine be on 2000 mg of metformin to help prevent weight gain. I just recently found a Dr. that was up to date on the research and increased my son’s scrip. It has to be titrated too so as to try to avoid upset stomach. I wish he had started out with this and maybe he would not have suffered the metabolic effects and gained the weight. I think the sleep component is probably what has kept him taking Clozapine for the rest and respite it has given him. I think all other side effects are rare. Also, we have another boy around the same age as my children who went to school with them who tried to commit suicide more than once. He went through some of the same treatment programs my son was in at the same time my son was there (so that was kind of nice to not be alone). He was diagnosed as Bipolar with Psychotic features and was put on Clozapine and I think it completely took care of his suicidal ideations. I understand about the weight gain bc my son was tall and slim and handsome and I hate that he has gained weight but I still think it is by far the best drug vs. the side effects and limited effectiveness of the other drugs.

I can’t thank you enough for this information. We are still trying actually find a doctor to get her started on it-4 weeks and the one she has finally got the prescription to the pharmacy but didn’t send bloodwork results or register her, just unbelievable. I finally found a facility near us on Friday, so she is having to start at square one. It is also very challenging as she is not a minor, doesn’t want me to interfere, but really can’t handle the logistics herself. Does your son rely on you? You mentioned you found a doctor to prescribe another medication…

My son is 28 and he relies on me to a certain extent. I just had to make him understand early on that if he wanted our financial support, he had to allow all of his health care providers to speak to me. That was critical in the beginning. He lives independently in another city and has a roommate and drives. He has recovered to the point where he now never misses a dr. appt, lab appt, scrip pickup, therapy appt. Although we are still his primary financial support, he has come a long way! As he has improved, I’ve taken a more hands off approach. However, he was seeing a dr. that retired suddenly and gave all of his patients to a new dr. I was not happy with that and neither was he. I read a lot about this and came across a dr. in his city who only prescribes Clozapine and I called him and explained the situation and he agreed to see him. Please know that it was not always like this. We had a few years of chaos bf he finally became med compliant and began to recover.

Also, if there is a university near you that has a medical school, psych department, you will probably find a treating physician that is very familiar with the protocol.

Do you have a NAMI organization near you? They often can provide information on resources if you can contact them. In addition, they have support resources like their free Family-to-Family class that helped me tremendously. As for your dear daughter, all I can recommend during the worst times is to remind her how much you love her. I know each patient is different and not all drugs work for everyone, but my son was once considered untreatable until he was on clozapine, and it then took about a year to see an amazing improvement. Today he has been stable for over 10 years. Don’t lose hope, see if NAMI can refer you to a good doctor. I hope you find one soon. NAMI HelpLine | NAMI: National Alliance on Mental Illness

This is so wonderful to hear, I’m so glad for your son and your family…there have been so many years of anguish and despair here I don’t dare to hope of her living somewhat independently. And yes, we have been weak parents, not putting our collective foot down as far as her giving permission for us to speak to her psychiatrist. I do, but often behind her back, or when she is made aware, it is usually met with anger. That must’ve been really rough to have a doctor retire suddenly, and to have to find another-not fun. May I ask if your son had to be inpatient when he first started clozapine? I spoke to a doctor who insists on that with her patients, to watch for adverse effects. Don’t know if that is standard practice, it wasn’t mentioned by the doctor we are stuck with at the moment.

Good idea @rosie94. In Maryland, the Johns Hopkins University has a clozapine clinic: https://www.hopkinsmedicine.org/psychiatry/specialty_areas/schizophrenia/patient_information/treatment_services/clozapine_clinic.html

Now that you mention it, yes he was in a treatment program (it would be considered inpatient) each time that he was put on it initially (3 times I think) but he had a co-occuring addiction disorder with marijuana. That made his diagnosis and treatment more complicated in some ways but easier for him to accept treatment (under the guise of addiction) at the time.

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