Hi Momdad,
Forgive me for asking if you have already said it- what sort of supportive therapy is your son doing along with the meds?
Hello - my son sees a therapist once a week For the last 4.5 years , the same guy. He helps but the patient can be helped only if the patient is willing. My son lacks insight, he is gravely ill and thinks he can ā bounce backā. He is unable to follow through with the tasks allotted to him. The ADLās are lacking sorely still.
My friendās sonās progress with Clozapine started slowly a couple of years after he started taking Clozapine. Her son FINALLY expressed a desire- he wanted to return to college. His mom worked with him on the steps for him to get what he wanted.
She suggested they start with a local community college class. In order to do that, he would have to start getting dressed each day and that meant putting on shoes as well as clothes.
Step 1 took longer than you would think.
Step 2 was him leaving the house to go on errands with her once a week.
Step 3 he had to go inside the places or business with her. This was really hard for him as he was still concerned about other people controlling his mind.
Step 4 was talking to the people they saw regularly on their errands. They started with a teller at the bank who was friendly and the teller began greeting him by name.
And so on
His progress was very slow, but he kept making progress once he had a goal to work towards.
He saw a therapist regularly who supported the ābaby stepsā plan. The therapist had worked hard to get him comfortable in sessions where he finally revealed a goal.
His dad played a big role as well. The parents were divorced and the dad had a new family. He would pick him up and they would do weekend events with the new family and guy stuff together.
Very slowly, in small increments, he recovered enough to become a Peer leader at NAMIās Peer to Peer. He did take that community college class eventually - everyone knew it wasnāt likely to happen but no one ever said it along the way and it did happen.
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Thank you - baby steps Is the same way We have been working this way for the past 4 years. The intent is there but āhiding and stuckā is the mode so not happening, therapist , us parents ( Iām the mom but dad tries a lot as well), doctor, another licensed care provider all trying with small goals . Happens off and on , regresses again. Do not know how much is instead anxiety how much is side effect of Chlozapiene and how much is new symptoms. We shall see what else can be done. There is no motivation only excuses but I know itās the illness talking and not the person. Thank you all.
There is some support for scz running a 25 year course. The symptoms can lighten up in varying degrees from person to person after around 25 years. Schizophrenia is a progressive, cyclical brain disorder - it can continue to get worse for many of our family members.
My sonās prodromal stage became obvious when he was in college. His active stage revealed itself to us just as slowly. We puzzled about what was going on with him for several years. At age 27, we were sure something was wrong - but we didnāt know what was going on. He didnāt live at home, he went from job to job, working simple jobs. His symptoms continued to increase. At age 31, he became totally disabled due to constant psychosis.
We brought him home to live with us and did our best to make his day to day life stress free. He always needed recovery time after more severe episodes. We listened to the advice we were given and used Dr Amadorās LEAP techniques. We learned to love and respect him again and were patient beyond anything we would have thought was needed.
Dealing with schizophrenia, like some cancers, is often a marathon more than a sprint.
From the time I have spent on this forum listening to peopleās experiences with their family members, the early 30ās seem to be the peakā¦ They say you wonāt know if your family member has reached the residual stage until after a few years into it. My son is 39 now, I would say it is much better than his early 30ās, I would not say its in a residual stage. I would say that he has developed better coping skills thanks to his therapistās CBT work with him.
Curious how much clozapine he is on? There is a blood test to determine if his clizapone level is therapeutic my grandson was on 450mg now he is down to 250mg but he is totally functioning he holds a full time job I honestly think a job has been good for him. He is making friends
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I know that ambivalence is a negative symptom of SZ. The drugs affect the dopamine system in the brain to reduce the positive (hallucinations and delusions) symptoms and maybe you have to accept the negative symptoms like withdrawal and not following through on things that go along with dopamine regulation.
If thatās whatās going on, ideally youād like to reduce the APs, but then thereās the danger of relapse.
Please see the previous suggestion about helps in this book āMEANINGFUL RECOVERY from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Helpā.
Maria, I am in exactly similar situation as you. Dr started my son on clozapine 3.5 yrs back and for the last 2.5 yrs he has been at 400mg. I too believe that if doctor goes one notch up on clozapine he can improve so much more. But dr is not willing to make any change. My son currently lives in a group home. He had stopped talking to me about an year back but since the last couple of weeks, I feel a change in how he responds to me. Also he started showing very clear symptoms in 2001. I feel if it is true that schizo runs a 25 yr course, may be he is entering the residual stage now.
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Do many of you see BOTH clozapine and Prolixin (Fluphenazine) or Invega injections combined? Our child is on both plus quetiapine plus lithium plus Clonidine at night for sleep. Would love to stop some (lethargy, weight gain), but our doc feels like ādonāt rock the boatā. Thoughts on combining Clozapine plus, plus?
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My son is on Clozapine, Haldol and Thorazine! Not the original plan, but when he tries to wean off anything, things get worse. I hope when he gets out of his teens, he might not need so much.
Even with all this, he still has positive symptoms. Clozapine has really helped, but doesnāt knock out all the hallucinations.
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My son was also on several high dosage APās as well as mood stabilizers and invega sustenna. But when Dr agreed to try clozapine on him, she started titration very very slowly and one by one. It took almost 2 yrs to transition and totally quit the injection. Also my son was older like 31 yrs. Younger years were very tough for us.
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@Hummingbird @pally Either of you see weight gain and severe lethargy with these mixtures? We do. My son was 175, gifted athlete. Now heās 240 pounds of couch cover. He hates it. Hates feeling so tired. But canāt get motivated.
Shared with PCP and Psychiatrist. Obviously, first answer always seems to be āwell, we hate to change with what seems to be working on SZā¦ā. And we agree.
BUT. If this continues Iām afraid his physical health will continue to deteriorate or heāll get off meds to lose weight (his proposed solution).
Finally got docs to add in 10mg a day of Riddlin to hopefully counteract hunger and lethargy.
We love Clozapine. Life-changer. And I donāt know if itās Clozapine or mixture of all the other drugs driving current weight/energy. So instead of modifying APs, weāll try riddlin. Will let you all know.
Yes, my son gained a lot of weight and is a lot less active. He actually got into the 280ās, when he had been 190. He saw an endrinologist and stated taking Metformin. Now heās back down closer to his normal weight. I think the Metformin makes a difference.
Still not able to do sports. Iām going to try to get him to go to the pool with me this summer.
His main issue with Clozapine is that his speech is really mumbly and hard to understand. This seems to be a rare side effect.
We are really grateful to Clozapine, overall. We havenāt gotten a new hole in our walls in quite a while (knock on wood!)
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My son has gained weight as well. However I dont think clozapine just by itself is responsible for the weight gain. May be one of the medicine in the cocktail is causing so much of weight gain.
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I just joined a Facebook private group called Team Daniel and the Clozapine Community. (That page is a result of Dr. Laitmanās work with patients on Clozapine and his book mentioned elsewhere,) There are a ton of questions and suggestions there re: Clozapine both from the community and from the admins on the site. It is helping me see more factors involved in Clozapine administration.
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Our son is on clozapine and abilify and weight gain is not a issue, never has been - we always encourage him to eat, he does not smoke or drink coffee/tea - we encourage him to drink ensure.
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My sonās nurses and doctors too were reluctant to switch to Clozaral. I just kept bringing it up. There is a lot involved for them and the patient in the beginning especially. It took a hospitalization and another doctor seemed keen to try it. It didnāt work the first time as he had the shot still in his system and his blood pressure shot up. She said donāt give up on it yet and the next hospitalization the doctor tried again slowly increasing dosages each week. It is working beautifully. He is almost at the once a month blood checks. He is doing better and slowly improving.
I hope your son can benefit from this drug as well.
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Read this thread from the beginning.
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My brother has been 4 months with clozapine combined with other meds that didnāt help (like solian, abizol, risperdal) but he is living with delusions. And iām feeling like iām losing hope.
When did you realise improvment?