I feel like we lost our son

Parayana

Parayana

Well-known member
Joined
Jan 22, 2012
Messages
2,140
@linus, I abused drugs for many years and it was a prolonged amphetamine and cannabis binge that finally pushed me over into permanent Schizophrenia, it took me two years and a few different meds to fianlly recover to the point where I could see that my delusions were in fact delusions. I still have residual paranoid and anxious thoughts but I can either rationalis eor just be mindful of them. Recovery is sometimes a long road and your son seems to be improving.
 
S

staying positive

New member
Joined
Aug 11, 2019
Messages
4
Location
new york, ny
Trying to understand more, I found out that he was looking at a clip about a game where somebody said in a bad english something about credit cards, government and security and he connected the “dots” by having something to do with him, he made a few screenshots of the “relevant” CIA faq info on the topic “what to do if somebody says he is CIA and asks for personal info. To me this sounds like psychosis still, even if he is not terrified.
Hi Linus. My husband and I read ALL your posts along with Claude’s responses. We are just in the beginning stages of trying to get help for our 15 yr old son who we think might be psychotic. We are desperately trying to get him seen by a psychiatrist for an evaluation. Prior to us realizing he may be psychotic we only thought his problems were “racing thoughts/anxiety” and OCD with a tendency of his mind to “wander.” Julian suffered a concussion 2016 (& lost hearing in left ear still to this day). I connected with a woman who’s son also suffered a concussion who had very similar experiences as my son and she said neurofeedback saved her son’s life…she became so passionate about NF that she now works at a NF center and has been guiding me. So prior to realizing my son might be psychotic I thought the drug free neurofeedback approach was the way to go. Julian had his 1st NF session Aug 6th. Since you mentioned NF I wondered how long was your son on the risperidone before you started NF? And did your NF doctor object to your son receiving NF while on any anti-psychotic medications? Clearly your NF dr allowed the risperidone but I wondered if any medications are a “ no no; “ The woman I have been in touch with just said make sure he’s not on any benzodiazepines. Do you think NF can help psychosis without any drugs? I’m just so scared about putting him on medications for fear of suicidal thoughts or any negative side effects, but of course not ruling it out….I just wanted to go the “drug route” as a last resort instead of a first resort, but again Julian hasn’t even been diagnosed yet. I have also been reading a concussion can cause psychosis & his QEEG ( brain mapping) did show a dysregulated brain so I wondered if a drug free approach was still on the table.
In short what lead us to think Julian might be psychotic was this past Thurs 8/8 after I yelled him on the phone to meet me at would have been his 2nd NF session ( I shouldn’t have yelled but he kept saying he’s not gonna go & I felt desperate to get him there and if I took the subway to get him he would have missed appointment time) he came home and my hubbie saw him arguing with someone who wasn’t there then he threw the phone at wall & attempted to throw blue tooth at window. My hubbie stopped him & calmed him down on bed & when I got home I massaged him & put on classical music that he responded to. While Julian has thrown things infrequently in fits of anger he never spoke to someone imaginary so that’s why we took him to hospital. Julian wrongly admitted to doctors at hospital while I wasn’t in room on no sleep & little food that he “ hears voices” but he explained to us what he really meant by that. He said when he’s having racing thoughts he uses his own inner voice to tell himself not to listen to the “ racing thoughts.” He did admit thought to being paranoid at bedtime thinking somebody/something is ‘ watching him” & therefore he is afraid to go to sleep; but said he doesn’t feel that way during the day
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
Hi,

I read like crazy the first 2 months after this episode started and I raced through all the options I had around me + the idea of going to London to a special private psychiatric clinic where for 10k pounds we would get a full evaluation, but I guess it mattered a lot that we calmed down after a while and things got better. It must be painful for you to pass through this and I guess your son could feel terrified with the positive symptoms, you have to show him love, especially in a pyshical way (hugs, holding hands, etc). Regarding NF our son was on risperidone for 1 month with quite some high dose and he was so scared at NF that I had to hold him in my lap like a baby although he is 1.86m and 80kg (unfortunately psychosis with persecutory delusions is terrifing for the person experiencing it), but we insisted (not by force, but by staying with him in the room, talking him through, reassuring, etc) and we completed 24 sessions with a rate of 3/week. His psychiatrist said she doesn’t have anything against NF and she doesn’t believe that it could help him, but for sure it wouldn’t hurt him. I have installed a Garmin smartwatch on his wrist and we were able to monitor his stress levels, heartbeat during those sessions (and after, including sleep) and it was obvious that it relaxed him at least. The person handling the NF setup (a therapist by education and experience) said that we should give up on meds asap, but we wanted to follow the psychiatrist’s advice since we started to really bond with her. During the 2 months for NF the pmed reduced the doses significantly and we are very close to a minimum that we’ll have to keep another 6 months. I can say that he is back to his focus level and his intelligence is also back at good use (computer science) (my wife is afraid that this left hard marks on him and he will never be able to perform well in science and this is what he always wanted (being a researcher at CERN)). After the summer holiday we intend to get a second round of NF with this low level of meds and monitor the outcome, I can’t say for sure that it helped him, but we felt that we have to try this as well.
Try to keep a good relationship with him always even if you get mad in some situations, you (both) should take care of yourselves somehow (we both are on SSRIs prescribed by pmeds so we can stop the despair) so that you can better help him. Show him love (less by talking and more by psyhical means) all the time and the more the mental issues show up the more you should “fight” back with love.
Regarding meds and hospital I can tell you that I regret that I got the ambulance to get him there, it was painful, scary (he ran away at first) and he was terrified that we want to kill him. If things would start again I will not get him to the hospital, I will insist in brining a pmed on premises and start from there in familiar place.
You should read about first episode psychosis (FEP) (I gathered quite a number of links online) so you can understand better what would be a golden standard for treatment, especially for teenagers and young adults (Australia and Canada seems to have the best guides for carers and pmeds). Don’t be too afraid of meds, however insist on the “start low, go slow” principle, just to get the positive symptoms normalised and more important is to evaluate properly the negative symptoms, in the end what matters is how functional is he..
And remember this is a marathon that started, save the energy for the long run. Hope you’ll all feel better soon. Please send me private messages if you want.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
And since you mention some sleep problems (he went through serious panic attacks at first when he couldn’t fall asleep and even now my wife sleeps beside him until he will feel ready by himself) pay attention to this with high regard. Eventually get help from a pmed with the sleeping issue (pills, etc). Once he has regular, good quality sleep, everything can be changed for better.
 
S

staying positive

New member
Joined
Aug 11, 2019
Messages
4
Location
new york, ny
Thank you! What is SSRIs? And can you share any helpful links Re: first episode of psychosis?
Are you aware IF NF can help with psychosis without any medication? I’m open to it if need be but again trying to go drug free route as my nephew who has anxiety/OCD ( but not psychotic) has horror stories of what meds did to him.


We didn’t bring him to the hospital via ambulance & once in the hospital he was relaxed the entire time. We were watching tv in waiting room for 2 hours n then they provided an iPad with movies.

Again we don’t know if he is psychotic we need the evaluation. I’m glad you felt NF helped. I was told you can’t take a break from it & return to it... it needs to be done consistently but I suppose it sounds like you’re at a place of healing! Congrats!

Yes we do “ fight” back with love( I just lost my cool on the phone Thurs for fear of him missing his NF appointment & realized that was wrong way to react) ; sometimes Julian accepts hugs/kisses or asks for them but then at times out of nowhere he says “ don’t touch me”; we adhere. He has been sleeping with my hubbie since July. We sometimes give him a homeopathic pill called Calms Forte which is a drug free sleep aid, which we sometimes take too & have even prior to all this happening.. it can be found in any health food store; they also sell a “ nerve tonic”

I truly wonder if someone is paranoid of someone watching them at night if that makes them full blown psychotic enough to warrant meds.
Thank you again for responding! We are so grateful! Btw we live in NYC.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
SSRIs are antidepressants with anxiolitycs features as well, once you start them (at low dose) you should follow a 6-12 months treatment since going cold turkey could lead to unpleasant effects.
If you feel like going a drug-free route (although with a full blown psychosis it’s a risky path) you should make sure you can control his anxiety and sleep and maybe just for these topics you could have some meds (like lorazepam prescribed and sleeping pills when needed). In Finland they approach first episode psychosis with a limited drug prescription and focus more on community and familiy help.
Some links:
http://www.p3-info.es/PDF/earlyfamily.pdf
https://www.orygen.org.au/Campus/Expert-Network/Resources/Free/Clinical-Practice/Australian-Clinical-Guidelines-for-Early-Psychosis/Australian-Clinical-Guidelines-for-Early-Psychosis.aspx?ext

Btw, I think we missed the therapy component: if he is calm enough to start talking to a therapist then it would be a good time to start building a “trust” relation that can be used later on for CBT.

And in NYC I read about this (which is based on the “open dialogue” method from Finland) that looks very promising: 142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): Parachute NYC: An innovative approach to serving people with psychosis in New York City

And regarding NF, indeed that therapist told us that we shouldn’t take a break from the sessions, but we felt like we were pushing too many things at him simultaenously and that became a problem “per se”. Right now we use the summer vacation just to enjoy our time spent together and as soon as school resumes we’ll reintroduce NF and massages (from a nearby provider). I can’t say that it can be used instead of a drug approach, from what I read there is not enough statistical evidence, just anectodic reports. The only topic where NF seems to do a great job is ADHD. But knowing what I know now, I would try NF with just anxiety pills if he would start a new acute episode.

Regarding the hospitals, in our country things are awful even if we have very good doctors, so this is why I have an issue with hospitalisation, however I read that also in US and in UK this is not something we would want for our children who experience psychosis.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
Forgot to add that we also give him Omega-3 extra strength manufactured by Jamieson
 
S

staying positive

New member
Joined
Aug 11, 2019
Messages
4
Location
new york, ny
SSRIs are antidepressants with anxiolitycs features as well, once you start them (at low dose) you should follow a 6-12 months treatment since going cold turkey could lead to unpleasant effects.
If you feel like going a drug-free route (although with a full blown psychosis it’s a risky path) you should make sure you can control his anxiety and sleep and maybe just for these topics you could have some meds (like lorazepam prescribed and sleeping pills when needed). In Finland they approach first episode psychosis with a limited drug prescription and focus more on community and familiy help.
Some links:
SSRIs are antidepressants with anxiolitycs features as well, once you start them (at low dose) you should follow a 6-12 months treatment since going cold turkey could lead to unpleasant effects.
If you feel like going a drug-free route (although with a full blown psychosis it’s a risky path) you should make sure you can control his anxiety and sleep and maybe just for these topics you could have some meds (like lorazepam prescribed and sleeping pills when needed). In Finland they approach first episode psychosis with a limited drug prescription and focus more on community and familiy help.
Some links:
http://www.p3-info.es/PDF/earlyfamily.pdf
https://www.orygen.org.au/Campus/Expert-Network/Resources/Free/Clinical-Practice/Australian-Clinical-Guidelines-for-Early-Psychosis/Australian-Clinical-Guidelines-for-Early-Psychosis.aspx?ext

Btw, I think we missed the therapy component: if he is calm enough to start talking to a therapist then it would be a good time to start building a “trust” relation that can be used later on for CBT.

And in NYC I read about this (which is based on the “open dialogue” method from Finland) that looks very promising: 142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): Parachute NYC: An innovative approach to serving people with psychosis in New York City

And regarding NF, indeed that therapist told us that we shouldn’t take a break from the sessions, but we felt like we were pushing too many things at him simultaenously and that became a problem “per se”. Right now we use the summer vacation just to enjoy our time spent together and as soon as school resumes we’ll reintroduce NF and massages (from a nearby provider). I can’t say that it can be used instead of a drug approach, from what I read there is not enough statistical evidence, just anectodic reports. The only topic where NF seems to do a great job is ADHD. But knowing what I know now, I would try NF with just anxiety pills if he would start a new acute episode.

Regarding the hospitals, in our country things are awful even if we have very good doctors, so this is why I have an issue with hospitalisation, however I read that also in US and in UK this is not something we would want for our children who experience psychosis.
http://www.p3-info.es/PDF/earlyfamily.pdf
https://www.orygen.org.au/Campus/Expert-Network/Resources/Free/Clinical-Practice/Australian-Clinical-Guidelines-for-Early-Psychosis/Australian-Clinical-Guidelines-for-Early-Psychosis.aspx?ext

Btw, I think we missed the therapy component: if he is calm enough to start talking to a therapist then it would be a good time to start building a “trust” relation that can be used later on for CBT.

And in NYC I read about this (which is based on the “open dialogue” method from Finland) that looks very promising: 142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): Parachute NYC: An innovative approach to serving people with psychosis in New York City

And regarding NF, indeed that therapist told us that we shouldn’t take a break from the sessions, but we felt like we were pushing too many things at him simultaenously and that became a problem “per se”. Right now we use the summer vacation just to enjoy our time spent together and as soon as school resumes we’ll reintroduce NF and massages (from a nearby provider). I can’t say that it can be used instead of a drug approach, from what I read there is not enough statistical evidence, just anectodic reports. The only topic where NF seems to do a great job is ADHD. But knowing what I know now, I would try NF with just anxiety pills if he would start a new acute episode.

Regarding the hospitals, in our country things are awful even if we have very good doctors, so this is why I have an issue with hospitalization, however I read that also in US and in UK this is not something we would want for our children who experience psychosis.
Hello Linus,
So after frantic calls/emails I found a psychiatrist yesterday who was able to evaluate Julian. The actual psychiatrist was on vacation but her psychiatric nurse practitioner did it, " Nick". He diagnosed Julian with OCD and psychosis, though I forgot to ask he felt it was in prodromo stage(I think so). He prescribed zoloft 50mg for the depression/ OCD and risperidone .5mg for psychosis. Although I didn't show or speak of my fear of giving Julian these meds I was terrified since prior to his diagnosis I was trying to do a drug free approach, and I'm so worried about the side effects. We gave him the zoloft for the 1st time last night but didn't give the risperidone which I'm now regretting because he couldn't sleep and insomnia is a huge part of his problem. I thought I should speak to his NF dr before giving him the risperidone, as he has his 2nd NF appointment tonight.
What side effects have you noticed from risperidone?
I don't know what to do now in between the 1x per wk sessions I set up with the psychiatrist; who also does CBT talk therapy. I'm wondering if I should put Julian in a partial hospitilzation program, where kids are there 9-3pm and then can come home. Or do I just try to take him on outings every day? Your thoughts? All he wants to do is play soccer, which is great but he can no longer be alone so he feels embarrassed if I'm with him and I don't feel comfortable trusting just his twin brother to be alone with him...though I think these are questions I should ask the psychiatrist. Julian is not harmful to himself or others.
It's 8:08 am now & Julian after being up almost entire night is in bed, now listening to classical music trying to sleep. He " grunts" every now & then and wiggled his fingers( when he wiggles his fingers we know he is stressed & I think he wiggles them as way of calming himself); when I lied next to him he said " my brain hurts, there's too much activity." I never heard him express it like that.
What did you do or have been doing with your son on a daily basis in addition to him taking meds? Thank you.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
This “too much activity” rings a bell somehow, he asked me several times not to talk that much (I didn’t know what to do then, I was like a broken mill), he might be overwhelmed by thoughts amplified by fear. The problem is that when you are the carer and the parent you try to fix everything now and unfortunately this is a marathon so try to resume your parenting, try to be there for him as much as possible. For example we play tennis together twice per week, we are going for a walk each evening with our puppy (golden retriever, which I highly recommend as a solution like an animal therapy), we watch a movie twice per week at a cinema or in our home, we go out riding the bike, we go for an ice-cream somehwere in the city. However you should ask him what things you try on with him makes him uncomfortable or anxious in any way and try something else until he feels better about those.
My wife uses Zoloft (I have a different ssri) and it takes at least 10 days to see some effects. However I read in several places that one shouldn’t mix antipsychotics with ssri unless it’s a special situation. If the objective is to have a good sleep you should have something like xanax or lorazepam for a while (up to 3-4 weeks).
0,5mg of risperidone is very low (we use 1mg now), it might be a recommended dose for the prodrome stage, still once you start it, you have to take it 6-12 months.
If he would sleep well enough (this is the first and most important objective at the beginning) I would try NF with anti-anxiety meds and unless there is ni improvement in 1-2 months I would head for antipsychotics.
In my country the pediatric psychiatrists start for 5-7 days with a standard antipsychotic and then move to a SGA, they claim it has a better outcome for positive symptoms on the short term.
You say “NF dr”, is it really a medic? Is it a psychatrist? Try to be cautious on trusting somebody that is trying to sell their solution.. I still have my doubts with the therapist who has the NF business, although I feel like it helped him.
Coming back about what to do on a daily basis, remember to act as a parent, there will be a lot of trial and error and you’ll feel that you make big mistakes, but everything can be corrected, just have patience and love on the display. If he likes football, let him be, try to reach an agreement where you could be around, explain to him that you both need each other during this period, but in the end he will become more powerful.
Btw, you can repeat as many times to him: I know that this is difficult for you, but I want you to know that we are together in this and I’ll always be around to help you get past this (I am not a native english speaker, I am trying to translate it somehow from our therapist, but I guess you get the point).
If you can take this effort on yourselves, it’s better to have him in the community he knows rather than in a hospital or surrounded by strangers. During the first 2 months (after the 10days in hospital) every time we were doing things in public he would get very scared, like always waiting for something to happen, he didn’t like crowds or situations with “no exit” and we had to take it slower. Also it’s important (and I insist) that you should be as calm as possible, talk with low voice, friendly, etc. If he wants to talk about some delusions, let him, but don’t debate the topic and instead comfort him and tell him that you understand that this is difficult, but you are there for him.
Regarding side-effects: at higher dose he complained about lack of errection and this was a huge hit to his manhood, he was devastated, angry, but it seems he is ok now at 1mg/day. He was also pretty much zombified at high doses, however he used to take half of the dose during the day.
Btw, I can leave you my phone number and you can write me on whatsapp or anything else if you feel like it can be helpful. In the first 2 months I was calling all the support I could (friends, doctor-friends) and I was keeping them for hours in my anxiety-loop.
And in the end there is always the right for a second-oppinion. I have asked 3 other pmeds! and in the end I came back to the first one mainly because all the others were trying to increase the dose and treat him like an adult (the brain is still developing until 24 years of age)
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
And btw, Omega-3 supplement high in EPA component is highly recommended for the prodrome stage as there is some evidence that it can stop moving to the acute phase.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
So as we would think that everything goes for a better outcome, our son decided to have a boy's night out and we were so stupid to think that sending him sms not to drink would be enough to stop a teenager. He drank 7 beers in a row, he called to say that he will sleep at somebody else's place and we thought well maybe he can have this night off and even without his med dose and we'll resume when he gets back home. He couldn't sleep at all, while all the others were sleeping, he called me early in the morning saying that he feels psychotic (it seems he doesn't know the definition by now, he actually feels anxiety, panic, nothing from the psychotic spectrum as he described) and cannot sleep. So we are trying now to make him feel safe and let him sleep a bit and then resume the meds. You just can't be too careful enough with a teenager..
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
407
Location
Eastern Europe
So he got to sleep 8 hours in 2 splits, but when I thought everything was just that, I took a look at his phone and he looked for nsa, cia stuff on google. I keep on finding these kind of things once or twice per month, I don’t know how to deal with this, he doesn’t want to admit that he has any “funny” thoughts. I will inform his therapist for now.
He was upset earlier that he can’t drink alcohol, he said something that this important for him (?!?) and he imagined that by the end of the year he should be allowed to drink and he could go off meds.
 
Thread starter Similar threads Forum Replies Date
Shana09 Psychosis Forum 8
Top