Coming off anti-depressants and anti-psychotics....

[lucille]

Hi everyone

Our 16 year old son has been on anti-depressants and anti-psychotics for 2 years.  He finished up school at the end of last semester and is going to take a 6 month break from his studies, as it became all too much.  Over the next 6 months, we would like him to decrease his medication and see how he goes.  Although his psychiatrist is very pro-medication and doesn't want him to come off it, his school counsellor and two different psychologists he has seen think it would be good to trial a break from the medication, just to see where his base-line is.  My husband also wants him to try coming off the medication....I'm not so sure.  I have concerns about a relapse. Two different psychiatrists have said that he should be in an in-patient in hospital when he comes off the medication, just to be safe.  However, I know other people who have come off their medication and haven't had to be in hospital.  The stress of school is now gone and we feel that was the major contributor to his depression and mild psychosis.  Anyway, we started to cut back the anti-depressant about a month ago and he has gone from 3 tablets a day to 2 tablets a day.  I'd like to sit steady there for awhile and see how things go. There have been no concerns yet at the reduced rate.  In terms of the anti-psychotic,  he was on 80mg per day, so 2 nights ago we started to halve the tablets so he is now on 40mg per day.  I'm happy to sit at that dose for about 2 months just to see how it suits him. BUT....being a teenager he has suddenly decided to stop the anti-psychotic altogether which I think is cause for concern and could be very dangerous. I am going to ring his psychiatrist tomorrow to discuss with her what she thinks.  My question is....has anyone had a teenager successfully come off anti-depressants and/or anti-psychotics and what was your experience?  Did you do it very slowly over a long period of time?  Were there side effects?  Did your teenager have to be an in-patient at the hospital?  Has your teenager now had to go back onto their medication?  We know a teenager who stopped both lots of medication cold turkey and he seems to be okay, but I don't want to do it this way for our son. Does anyone have any thoughts?

[TOM-RO]

Hey @lucille hmm it is a common concern this one and I am very glad you've started a conversation around this, it can be quite the transition for a person coming off meds and family support is definitely a huge help throughout the process..Sounds like you've got a few differing opinions on this one, but great to hear you've got so much professional insight and also how wonderful for your son to have such a supportive family. Just a heads up on RO parents we can't get too heavily into medical advice unfortunately [click here for guidelines], however we can definitely chat around the emotional support yourself and your son may need during this time.

You mentioned the psychiatrist has a differing opinion to other health professionals, is there someone in the mix that you have a stronger rapport or trust with you could talk to? Could you trial having your son come off the meds at home and have hospital as back up if he does relapse? What are your thoughts around that?

[Ngaio-RO]

Hey @lucille I agree with Tom, thank you SO much for being willing to have this conversation here. It's such an important one. It needs to be ok to discuss medication related to mental health. They are such a complex, unknown entity, to also not be able to ask questions, hear experiences and relate yours makes it so much harder to navigate the landscape. So yes, good on you.

And as Tom says, we are not able to give medical advice but I'm confident that's not what you want. It sounds to me like you're wanting to hear what others have been through so you can feel a bit more confident in your choices. Am I on the right track?

Personally, I think your approach of making a change and then waiting to see how that feels for him is a great way to do this. Is your son willing to negotiate time frames? As in, 'I will wait for x amount of time and then drop down again.'  It can take up to 6 weeks for MH medication to take affect so my understanding is that's a good rule of thumb to apply when making any changes.

[lucille]

Thanks everyone for your replies.  Yes, that's correct.....we are not after medical advice as we have a good team of doctors around us. We are really just wondering if there is anyone out there who has had a similar experience and might like to share how things went?  Thanks for your support. 

[lucille]

Thanks for your thoughts.  We might actually talk to our GP, that might be a good way to go.  It is the psychiatrist who is wary about him coming off medication, but the psychologist that he sees and the school counsellor (from Headspace) think it is something worthy trying...with medical supervision of course.  They have both said that sometimes teenagers get left on this sort of medication for too long and they aren't ever allowed the chance to try and come off it to see how things are.  As you know, with these sorts of medications, particularly the anti-psychotics, there are a whole range of side effects involved.  Sometimes I feel the medications have made him better, but have opened up a whole new set of problems at the same time.  Thanks again everyone.

[Schooner]

Hi @lucille,

Our 14 year old has come off a number of medications over the past 18 months, as we try to find the right mix.

I definitely see withdrawal symptoms for some of them. At one stage I could time it: 1 month after a reduction he would get a "wobble". We always reduced them very slowly, leaving 6-8 weeks  before making another change.

He was on a low dose anti-psychotic for a while (12 months), prescribed for depression not psychosis. We reduced that to nothing in 3 steps, but even with these small reductions I'd see some withdrawal symptoms.

The trick is to know what is a temporary withdrawal symptom and what is a permanent return of unwanted symptoms. We were guided by our Psychiatrist, who I have a great faith in. I tried to program these "wobbles" to coincide with school holidays, because the "wobbles" freaked out the school! In our case they lasted for a few days or a week (irritable, depressed, angry...you know). We never took him to hospital, but I was very willing to give him a day off school during these times "just in case".

We also went back to "high alert" security a couple of times (double locked doors at night, keys hidden, etc).

He is still on meds, although of a much more benign type now. Fingers-crossed.

I try to give my son a say in his treatment, I think that is important. Maybe if your boy is determined to get rid of them (which I fully understand) you can make a deal: Stop them, but allow us to keep you safe for a month or so?

Good luck

[taokat]

Hey @lucille, thank you for sharing, and I can fully appreciate your concerns about your son coming off his meds. I have been through this as well after a change of psychiatrists, and I remember being super worried things were going to go back to how they used to be if my daughter went off them. She was on so many, and high doses. Naturally, she was keen to get off them, she didn't see that she needed them.

Coming off them was done very slowly over a 2 month period between dosage decreases to minimise withdrawals. We were lucky, and she didn't suffer side effects. Then once she was off all of them, we had another month to trial her on no meds and see what happened before she was reviewed again. This was all done at home, although I was in close contact with her counsellor and psychiatrist. 

After a couple of months my daughter did relapse, then decided herself that she needed the meds. We had a different psychiatrist at this point, and she was placed back on an antidepressant, but not a high dose, and that medication has continued. A few months after that my daughter's psychosis started becoming an issue and frightening her, so she was placed back on a low dose of antipsychotics. Her psychosis is now under control.

So, we gave it a go, and although she is back on meds, she's not on so many or the high doses, and is functioning well (on our scale!), doing schoolwork (distance education), back to playing sport once a week, and has started a part time job. 

I can understand your concern about your son going cold turkey off his antipsychotic medications. Is he feeling any side effects? As parents we want what's best and safest for them, but we can't pin them down and force them take their medication.  

Let us know how you got on after calling his psychiatrist.

[motherbear]

Great advice guys !  Thanks for bringing up this issue @lucille !! Medication can be a very important part of a recovery / management plan for mental health . 

MH medication , needs to be treated with respect and kid gloves . We are lucky to live in an age when new generation drugs are reducing the many awful side affects of trying to stay " mentally well " . If it was not for medication , half of my family would be dead . I am so grateful for their availablity and the science that goes into modifying and researching them . They have helped my family to live more qualitative lives and given the rest of the family some semblance of peace . 

 I also believe it is important to explore with care the ability for our young people to have the lowest dose possible to function well . Despite the many advances , there are still long term side effects , for some people . Exploring the right cocktail for your own body chemistry is a struggle at first but with perseverance you will get there ! 

I may be biased here but I believe in Mother's instinct  enormously. We gave birth to that child and know them like no other , our connection is  deeply spiritual  and  biologically visceral  .

It's wonderful that you have so many professional people in his court , at the end of the day , it's still an inexact science , so treading with caution and Mums instinct is in my view your best bet . 

Best of luck and thank you ! I still see in society a kind of divisive attitude around  mental health medications . I always say , until you've lived it , you will never truly respect its importance as part of the mental health equation . 

Gratitude 🙏

[Schooner]

Agree with @motherbear. There was a time when I would have said "Medication? No way!". But I saw quickly that my son's condition was not something that would change with counselling and support alone, even with me trying to do everything right. The road to getting a mix that is "almost right" was hard. Now the battle is with the side effects (mainly tiredness), which we are working on slowly.

Dads have instinct too

Cheers

[Sophi-RO]

Hi @lucille - thanks so much for the update... Do let us know how you go talking to the GP and also advocating to the psychiatrist.

Anyone else here got a personal experience like this?