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New to the group - Son Diagnosed 1.5 years ago, Educating Myself


#21

DawnS my daughter has never lived away from home or had a job so yes, I do worry about her being in Canada. I’m in Arizona! But her fiancé does have family nearby. And I am happy that she is getting a chance to have a ‘normal’ life. So glad your son is feeling better.


#22

Thank you Anni, we can resonate with your own experiences. We only learned after the fact that our son was a heavy cannabis user and had been for three or more months when the paranoia started (currently none it seems), and we thought it was just a teenager thing … It is amazing your son voluntarily decided to give up cannabis. I am sorry to read how confrontational your son’s symptoms are, and I understand the urgency of getting the meds into him. I wonder how it pans out longer term, where the patient insists he does not need meds because he is stable without them, yet all along his food has been served with a peppering of meds. Living independently would be impractical for them in such a case. We have a vegetative son whom will randomly break out with uncontrollable laughter, grimaces and among many other things, tries to boil an egg using only cold water.


#23

Thank you hope. It reads like there are some other medical complications with your son. I could not help but wonder if the kidney transplant issue was related to the meds in the first instance. We are going to have a family meeting in the next few days (patient excluded) to discuss best way forward. I worry about the breach of trust leading to paranoia and worse.


#24

Thanks Day-by-Day … in our son’s case the first four weeks of meds were injected into him (1.5 times recommended dose, for additional insurance we were advised) before the authorities would allow us to get him out of the mental health institution and accompanied by us on a flight back home. He bloated up like bull frog and that was hard for him. We understand about the loss of good friends for him too. It hurts us all. Neighborhood are watching out for the druggie acquaintances. We have some big decisions to take, really appreciate you sharing your experiences. It helps a lot.


#25

The kidney issue is unrelated to the psych meds. Both of my sons have a genetic kidney disorder and both required transplants. While the stress of needing a transplant probably didn’t help, his paternal grandmother and her sister had schizophrenia.

Trust is big, yes. My son’s scz is paranoia based. He is going to be paranoid no matter what I do. He’s 35 now, my being okay with drugging folks on the sly has to do with hindsight in my particular situation.


#26

Welcome. Good your son has a doctor and was diagnoised. How old is he?


#27

Hi and welcome all you newcomers. I’m glad you found this site but I’m so sorry for circumstances we all face. This is year 5 after diagnosis and year 8 after his first episode. You can read our histories and see your situations in there just like we see ourselves in yours. I get the fear of people showing up at your house.
Our son lives at home, actually next door and we are planning to build a cabin for him with plenty of room to walk and circle. He doesn’t believe he is ill and will hardly ever take anything. I’ve been directed to a mental health center downtown (about 45 minutes away) and have their address in my GPS. The center close by said they don’t have the resources to treat his illness and this other can offer more support. I am hopeful and have another new doctor appt scheduled.
Our expectations have dramatically changed since his diagnosis. I used to push and now I do not. Stress only increases his anxiety and symptoms. God bless us all.


#28

And I should have explained further. My son’s first psychiatrist only worked with people with severe mental illness. Sometimes with meds, people like my son who don’t have any insight, can gain a little insight once they are on the meds. Not always. The first time my son was on an anti-psychotic, another appointment was scheduled a week later. The plan was to get an Invega injection in him if the other med made him agreeable. It didn’t work, he only took the AP for a couple of days before he says his arm began jerking around on its own and he stopped the med.


#29

This a good forum to learn from, so welcome.

My son currently is paranoid sz. He is steadfast in his no meds of any kind. Even OTC pain relievers. We are going along with his stance, but have said no meds also mean no street drugs as they are meds too–and that includes cannabis–and have side effects also. We have also said if he becomes a danger to himself or others he will be involuntarily admitted and back on meds. There need to be healthy boundaries set for any relationships and that includes relationships with our MI loved ones. So consider what you feel is in his best interest, communicate it, and follow through.

Back to ‘normal’ is not our goal. Would he be better on meds? Probably. But he is functioning in his odd sort of way and we have a relationship which is mostly good.

As much as you are drawn to the idea of sneaking in drugs, please consider what may happen if you do. Maybe you will see some improvement, but down the road, chances are good he will go off meds again and remember what you did this time.

This will be a bumpy ride. Everyone’s course is different and in the end only you can decide what is best for your family. Best wishes.


#30

Nero, yes, independent living could not happen. He doesn’t plan on it for now anyway. He has an apartment like space on our second floor. A nice, calming space. He lives pretty calmly for the most part. But I went on vacation for a week in November so then the symptoms started, but he’s come back now. I imagine a time in the future that we will just have to let him sink in psychosis and then be committed to the hospital again. They’ll get him started on taking meds on his own. Though I hate to see that time come. The last stint in the hospital they had him locked in a room for 40 days with no treatment. They said they were waiting for the Jarvis order, which would allow them to give him shots without his consent. That was torture for him and for me. they wouldn’t let me see him or anything. I don’t know where to find a good hospital here, so I keep giving the meds. It keeps him able to live life. We can play cards or other games,go for walks, go shopping, he even came on vacation with last year to Alaska.

Is your son not able to communicate?


#31

Hi Anni,
I understand your situation. It is such a challenging disease that presents itself in so may different ways… My step-son does communicate of sorts, but his short term memory can be very random, and he does not recognise old acquaintances, remember pets names, or even what bus to take to get to his old school. We are building a small cabin for son on our property.


#32

Just want to say,it’s a great comfort to have a group

that knows what you go through with a schizophrenic (SZ) family member.

How is your family member doing during the Holidays?

I’m heart-broken because my son hasn’t been able to come to my home for 20+ years.

He’s 45 and in a group home run by the State.

He’s the best I’ve seen him in years; stable and himself again on meds that are working.

Pray for continued recovery. Educate yourself.

Don’t be too hard on yourself. Learn when you’ve done all you can then walk away.

Blessings!

Vermont woman


#33

Welcome to all the newcomers. This group is in my opinion, the best for the parents, partners and caregivers. Some groups limit topics and constantly threaten to remove you from the group if you don’t follow an endlessly long set of rules. Like you need something else to stress out about…Anyhow this group has been a great source of info and comfort. My son is 17 but his story started long ago at age 6 when he was diagnosed as having severe ADHD. At about age 7 1/2, he reported to me there was a “man in his head” saying bad words. He was already under the care of a child P-doc for the ADHD. She didn’t want to label him w/ a diagnosis at such a young age but he was put on anti-psychotics. A couple of years later, he reported that the “man” was gone and he was taken off the drugs. At about age 16 after an argument with his dad and me, he admitted that the voices never stopped but he was afraid we wouldn’t love him if he said they were still there. Funny how prevalent the mental illness stigma is even apparent to a child. So back to the P-docs and back on the drugs. He has had periods of aggression and violence but is stabilized now on Zyprexa and Trileptal.


#34

@Nero. You may want to try a glutin free diet. A few of us on here are trying that for those of us who have kids who won’t try meds. We (here in the States at least) have Flax milk that has Omega 3 in it which I’ve read can help as well. I’m only several weeks in to making the move to glutin free. My son was diagnosed Sz last summer but the prodomal (a new word I just learned on this thread) could have been for 6 years. We had no idea what was going on with him until he had a full blown psychotic episode a year ago August. He is 27.


#35

Thanks DianeR,

Glutin free … looking into it now. I had read about the Omega 3 benefits also. Serotonin boosting perhaps? Our lad was so health conscious before this all happened, he would have most certainly have tried anything as a natural therapy. His only obvious coping mechanism at the moment is a full bottle of red wine. And then perhaps some more. We found him looking through old family photos and videos the other night …because he wanted to try to remember what his childhood was like… he is 18. Diagnosis about the same date as your son.
Thank you.


#36

@Nero - My son has a distorted view of his youth. I’ve pulled out the photos as well. He spent a good while with them. He also likes wine/booze. Fortunately, since he doesn’t like to go out, I can limit that. But he’d easly drink a bottle or more as well if I gave it to him. After his first episode we got him to take Chinese herbs, ecspcially formulated for him. He did that for more than 6 months but doesn’t seem interested anymore. I have a friend who’s son will here voices if he doesn’t take his. I’ve had some luck brewing them myself and I’m guessing he drinks it. Perhaps I’ll brew some tonight : )


#37

I’m new to the group. My son is 17 and was diagnosed with schizophrenia in October of this year. It became apparent he was suffering from a mental illness about two years ago. We got him help immediately. Unfortunately my private insurance company has a long standing history of poor treatment for their mental health patients and have been true to form. After about six months and his second of four psycotic episodes, I was able to advocate for inpatient treatment which was provided however the insurance company disregarded the discharge recommendations of the facility where he received inpatient treatment and sent my son home. As predicted by the treatment facility and my family he relapsed and has been arrested for the fist time in his life. My son is not violent but when in psychosis he does irrational things he later does not remember. The treatment facility and treating doctor never told him his diagnosis because he reacted adversely to being referred to as being in a psycotic state so when I mentioned schizophrenia he said I was lying. I showed him the paperwork and it seemed to resonate with him but only time will tell. Its been a struggle. From everything I’ve learned we are just beginning the struggle with this devastating illness. My son does not believe he has a mental illness and would rather smoke pot than take his antipsychotic meds because pot is the wonder drug don’t ya know. The pot makes things worse as it brings on psycosis. After his arrest he has been medication compliant but said he will not stop smoking pot. My son will be18 in a few months and I will no longer be able to be involved with his treatment without his consent. Pot was legally approved for recreational use where I live. He is distrustful of me because he believes I convinced the doctors to put him in the hospital. I am afraid for my son and feel powerless to advocate on his behalf when the professionals providing his care are not being completely honest with him or providing the recommended treatment while I have some influence. My heart aches for my family and all the families struggling with this illness. I’m involved with my local NAMI and they are fantastic but it still does not seem enough is being done to help the mentally ill. I’m continuing to practice self care and to advocate for my son but will be popping in these forums often for encouragement and information. Good bless.


#38

Where does the money come from to purchase pot? Cut off the cash…


#39

Also, if possible and he’s spending his own money (I also would not give my family member money if they were using mj.), try to get him to understand that it’s the THC that causes psychosis. No marijuana would be much, much better. A high CBD and low or no THC strain might reduce the harm.


#40

Hi Momandcaregiver1,

I think maybe your son has the symptom anosognosia - its a part of the illness for about 60% of the people with schizophrenia.

My son has this symptom, its also called a" lack of insight". It means that my son is unable to understand that he is mentally ill.

I used to try to explain things rationally to my son because I didn’t know that wasn’t the best way to handle his situation. There’s a book and several videos (on youtube) by Dr Amador that explain the problem and offer ways to earn back some trust. The book is “I’m Not Sick, I Don’t Need Help”. I am not savvy enough to make links - if you look around the site and read the threads keep an eye out for the links to Amador videos, you might find them to be helpful.

My son loves to self medicate with pot also. Sadly, my son is unmedicated.

It does sound like you are off to a good start getting established in this sorrowful business.

Best wishes to you, Hope