Schizophrenia and movement disorders

Posted by lisaben @lisaben, Sep 14 8:45am

My son, now 26, has been dealing with negative symptoms not schizophrenia for nine years. He has been on several antipsychotic medications, most recent is clozapine, for the last four years. Increasing mannerisms have been occurring, touching of the hair and face, looking up, and constant hand movements. On some occasions his arm will fly up. He masks the behaviors well by constantly moving and getting up but I know he is in nonstop turmoil. I want to help him to relax. I feel he has never gotten the proper treatment.

Interested in more discussions like this? Go to the Mental Health group.

It is schizophrenia,IDK how the not got there.

REPLY

My son, now 26, has had schizophrenia for the past none years. I feel he has never gotten the best treatment. He is currently on clozapine 350mg and is experiencing many mannerisms that he tries to mask with constant movement. Can Mayo clinic help ease his discomfort?

REPLY

Hello @lisaben, Welcome to Connect. I just want to let you know that you are not alone. Our son was also diagnosed with schizophrenia in his early teens and spent over a year in the hospital and when they gave up on him, he spent six months in a state hospital where the goal was to help him learn to live with his condition along with the medications. He's now in his mid 50's and doing really well but the first 10 years were tough on him and my wife and I. What really helped was finding a local support group associated with the National Alliance on Mental Illness (NAMI). They have some good information you might find helpful along with a search tool to locate a local support group here – https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Schizophrenia/Support.

I think the best thing that helped our son was being able to manage his medications so that he is able to function and keep a job. Early on it was difficult for me because I don't think I understood how important it was for me to respond calmly when he was having difficulty. It was extremely helpful to have a local support group with other parents in the same situation and being able to share experiences. Over the years his diagnosis was changed to manic depression and his doctors tried several medications until finding one that worked the best for him.

Do you have a local support group in your area?

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@johnbishop

Hello @lisaben, Welcome to Connect. I just want to let you know that you are not alone. Our son was also diagnosed with schizophrenia in his early teens and spent over a year in the hospital and when they gave up on him, he spent six months in a state hospital where the goal was to help him learn to live with his condition along with the medications. He's now in his mid 50's and doing really well but the first 10 years were tough on him and my wife and I. What really helped was finding a local support group associated with the National Alliance on Mental Illness (NAMI). They have some good information you might find helpful along with a search tool to locate a local support group here – https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Schizophrenia/Support.

I think the best thing that helped our son was being able to manage his medications so that he is able to function and keep a job. Early on it was difficult for me because I don't think I understood how important it was for me to respond calmly when he was having difficulty. It was extremely helpful to have a local support group with other parents in the same situation and being able to share experiences. Over the years his diagnosis was changed to manic depression and his doctors tried several medications until finding one that worked the best for him.

Do you have a local support group in your area?

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Hi John,
Thank you for replying so quickly. I have joined NAMI and went to Family to Family about 7 years ago. Then I became a facilitator through Indianapolis but the group I joined was not recognized for some reason and it got political. We have not met since Covid.
I am so happy that your son was able to find his way. Thankfully for my son, he has tremendous family support and a lot of love. Without his brothers, this once popular athlete would have no friends. They all abandoned him in high school bc of his behavior.
Unfortunately, the negative symptoms are most prominent in my son, and his illogical thinking keeps him from sustaining a job. Now with his mannerisms increasing, he is getting stranger. I wonder if the mannerisms are precipitated by boredom? It’s so hard to see him circling the house every day with nothing to do. I try to take him places and he likes to go out with his brothers.
Honestly, we have yet to find a doctor that really cares. The U of Chicago doctor did not warn me about how much clozaril we would have to achieve for therapeutic effect. He landed in the hospital after trying to kill my husband. U of C has no inpatient for mental illness, so he spent 7 weeks at Regional. His doctor never followed up. We moved to St. Catherine hospital with a doctor he likes who did both in and outpatient, but he rarely kept appointments being stretched so thin. He was fired. Now we have a nurse practitioner and I find myself checking his clozapine levels through my chart. I am his advocate. By law, blood tests must be taken but the doctors are too busy to check if the levels are too high or too low. A month ago, after adding another med, his levels were double the highest range. I alerted the doctor. Shouldn’t this be the other way around? I seek better care for him. I know he could be on a better place for his normal. I just can’t find a doctor with the experience, time and concern for him. If you know of anyone, I am all ears.

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@lisaben

Hi John,
Thank you for replying so quickly. I have joined NAMI and went to Family to Family about 7 years ago. Then I became a facilitator through Indianapolis but the group I joined was not recognized for some reason and it got political. We have not met since Covid.
I am so happy that your son was able to find his way. Thankfully for my son, he has tremendous family support and a lot of love. Without his brothers, this once popular athlete would have no friends. They all abandoned him in high school bc of his behavior.
Unfortunately, the negative symptoms are most prominent in my son, and his illogical thinking keeps him from sustaining a job. Now with his mannerisms increasing, he is getting stranger. I wonder if the mannerisms are precipitated by boredom? It’s so hard to see him circling the house every day with nothing to do. I try to take him places and he likes to go out with his brothers.
Honestly, we have yet to find a doctor that really cares. The U of Chicago doctor did not warn me about how much clozaril we would have to achieve for therapeutic effect. He landed in the hospital after trying to kill my husband. U of C has no inpatient for mental illness, so he spent 7 weeks at Regional. His doctor never followed up. We moved to St. Catherine hospital with a doctor he likes who did both in and outpatient, but he rarely kept appointments being stretched so thin. He was fired. Now we have a nurse practitioner and I find myself checking his clozapine levels through my chart. I am his advocate. By law, blood tests must be taken but the doctors are too busy to check if the levels are too high or too low. A month ago, after adding another med, his levels were double the highest range. I alerted the doctor. Shouldn’t this be the other way around? I seek better care for him. I know he could be on a better place for his normal. I just can’t find a doctor with the experience, time and concern for him. If you know of anyone, I am all ears.

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Our son is in the Mayo Clinic system but I'm not sure who his doctor is currently. When he was a teenager he had to have the regular blood tests also and I think he was on clozapine but I'm not sure. His meds have changed several times since the early years. He's now taking olanzapine and citalopram which can have a drug interaction rare side effect of increasing the heart rhythm but fortunately it hasn't been a side effect for him. I do think it's important for your son to have a doctor that he likes and can communicate with. I don't believe his current medications require blood testing. I think the medications have gotten better since our son was diagnosed so it might be worth checking with his doctor if you think the meds aren't helping. A few times early in his diagnosis our son had stopped taking his meds and had a setback. Now he's really good at taking his meds and keeping a regular schedule.

I don't know if it's helpful for you but I did see an article on clozapine versus olanzapine that explains the difference and how it works. Also, included an article on another promising medication.
— Clozapine versus olanzapine for people with schizophrenia:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6517029/
— Promising New Medications for Schizophrenia: https://www.treatmentadvocacycenter.org/fixing-the-system/features-and-news/4263-research-weekly-new-medication-schizophrenia

Mayo Clinic has some good doctors in their Psychiatry and Psychology department if that is an option – https://www.mayoclinic.org/departments-centers/psychiatry/doctors.

Do you think your local NAMI office might have some recommendations for a doctor?

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Thank you so much! I am going to check out those articles right now. I believe he tried olanzapine before he was on the invega injection. I would love to find a psychiatrist/neurologist. I will investigate if Mayo has an opening.
I know NAMI, at least our local, will not recommend doctors but they do discuss the ones that are known in the area. The problem is, many have left their practices and there is a tremendous shortage.
I really appreciate your insight and input. Blessings to you!

REPLY
@lisaben

My son, now 26, has had schizophrenia for the past none years. I feel he has never gotten the best treatment. He is currently on clozapine 350mg and is experiencing many mannerisms that he tries to mask with constant movement. Can Mayo clinic help ease his discomfort?

Jump to this post

Hi Lisa, I wanted to respond to your question about seeking an appointment at Mayo Clinic. If you would like to explore if Mayo Clinic might be right for your son, you can start by submitting an online appointment request form. This will allow you to set up a phone call with a coordinator to ask more questions about physicians and options.

Here's a link to the form and more information: http://mayocl.in/1mtmR63

How are you doing today?

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@lisaben

Thank you so much! I am going to check out those articles right now. I believe he tried olanzapine before he was on the invega injection. I would love to find a psychiatrist/neurologist. I will investigate if Mayo has an opening.
I know NAMI, at least our local, will not recommend doctors but they do discuss the ones that are known in the area. The problem is, many have left their practices and there is a tremendous shortage.
I really appreciate your insight and input. Blessings to you!

Jump to this post

Hi Lisa, I just wanted to touch bases with you and see how you are doing in your search for help for your son. Feel free to tag me if there is anything I can do to help with questions you have.

Hoping both you and your son have a good day.

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@colleenyoung

Hi Lisa, I wanted to respond to your question about seeking an appointment at Mayo Clinic. If you would like to explore if Mayo Clinic might be right for your son, you can start by submitting an online appointment request form. This will allow you to set up a phone call with a coordinator to ask more questions about physicians and options.

Here's a link to the form and more information: http://mayocl.in/1mtmR63

How are you doing today?

Jump to this post

Thank you, Colleen. I would be happy to fill out the forms and look forward to seeing if there is a doctor who can help with experience in schizophrenia and neurology. I am waring down from dealing with the ever-present movement and illogical reasoning, but I will persevere. Thanks for your direction.

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@lisaben

Thank you so much! I am going to check out those articles right now. I believe he tried olanzapine before he was on the invega injection. I would love to find a psychiatrist/neurologist. I will investigate if Mayo has an opening.
I know NAMI, at least our local, will not recommend doctors but they do discuss the ones that are known in the area. The problem is, many have left their practices and there is a tremendous shortage.
I really appreciate your insight and input. Blessings to you!

Jump to this post

Lisaben,

I do not have schizophrenia but do have bipolar I. I take Invega which is in the same class of drugs, the atypical antipsychotics. Some of the newer ones, have fewer such side effects.

I do have similar movements, and my doctor put me on Cogentin for it. It helps but does not 100% eliminate them. In my case, the movements are in my feet and hands (mostly feet), occasionally the face. I also have some restlessness. I would say it's 80-90% improved. It's important for him to talk to his doctor.

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I understand your frustration.
My son has been prescribed Abilify injection (2016) his tremors have become very noticeable.
His head now bobs and his hands are moving unintentionally. He was a patient at MAYO last year. It is a hopeless feeling when you’ve asked for help to know avail.

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I feel for you. Ability isn't supposed to ha e as many side effects. Seems there is no knowing. We are trying engrezza but have not started yet. I will let you k ow if I notice a positive difference.

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