Ongoing support thread?

[SouthWestmom]

Shall we have one?

It's so difficult to deal with.

Anyone raising a child or young person with mental health issues who wants to just check in?

Does anyone have adult children who are affected?

My oldest child is 21 and has anxiety and OCD. She lives away but still has support needs.

Octopus my middle son pulled a knife on me once. It never happened again. Are you able to talk to him about the consequence of doing that?

I agree btw, we all know it's a long road ahead and probably stressful and worrying rather than gaining more independence.

Hey lovelies, is it all just too depressing at the moment?

I've tried joining a Facebook group but it's too wide ranging for me to manage the posts.

I'm readjusting everything - my lines have been trampled all over. Like, if he stops going to school I'll give up; if he stops going out I'll give up; if he doesn't attend therapy I'll give up; etc etc.

And here I am, still breathing, how strong we are for our children.

Are you alright southwestmom lovely? How is he doing?

Hi, not so great really. I think this is long haul. I'd honestly advice people to read up before going along with professionals and their advice. I think there's assumptions that everyone knows how it works so we've been hit by things that are 'normal' in the system.

Staff remain consistently caring and kind so no worries on that front.

What about others (I know your dd is up and running as it were 😊)

Hi SouthWestmom and fellow carers - and for us all . We're also unfortunately experiencing camhs residential care under section. The care is good, unit v good. Only been one week so still hopeful / positive for dd. BUT I am devastated and just cant see how we all come back from this. No idea what any kind of 'normal' looks like any more. My new role is carer/police, not mum. NOT sure I know how to mum any more anyway. OK, thank you, not easy to share that IRL, but helpful to write it down here ! Good luck everyone and hugs all round (and more gin) xx

Hi soberish, hope you are bearing up. It's a horrible situation - you don't parent anymore just visit in a really unnatural situation. We haven't had any leave at all which has made it worse. Have you asked or is it too soon?

Hi SouthWestmom, in fact they're very encouraging of leave so outside nearby we've done, and expecting home visit next week / maybe even this weekend ? It's just so weird though, unnatural is exactly right.

Oh that's good. I've stopped asking now because it's very depressing

My child is a little older but was an in-patient as a teen and it is a very unsettling experience. Parents of healthy teenagers don't really understand the mixed feelings of guilt (the child is locked up) and relief (at least they are safe).
I don't want to post details in public but am happy to answer questions/chat by PM.

I'm just bumping this. No pressure if posting makes it worse.

Oh rose I missed your post. Yes it's very disempowering and not like being a parent anymore . I don't want to go into detail as I'm sure I could be identified if someone who know me found it .

With love SouthWestmom

I have changed my username for this as I know that a few people in real life know me on here.
My beautiful 13-year-old daughter has recently been having mental health issues. I found out at Christmas she was self harming, although thankfully she had been doing it long and is feeling very low about herself. She has also said that she has thought about suicide and around Christmas time attempted suicide although I didn’t found out about this until much after the fact. I am finding it hard even to write this down as it is so hard to believe.

This weekend she told me that she hears voices in her head telling her that she should hurt people when she’s mad.

She has always been a child to suppress her emotions and I fear I haven’t addressed this as well as I could have in the past. She has always seemed like a happy littlr girl and I has very rarely shown anger or much negative emotion at all.

We had our first appointment at Camhs last week and I am waiting to hear back as to what they suggest the next steps are for us.We’ve also been to the GP but he just said that camhs will be dealing with it all and there is very little that he can do.

I just wanted to share with people who hopefully will understand as I feel absolutely destroyed by this and I’m really struggling to cope. I feel like I’ve tried so hard as a parent to get things right. I feel like I failed her and I’m worried for her future. The good thing is is that she has been honest with me and asked for help which I know is a real positive.

Hi so sorry you and your daughter are going through this. You're right, it's a real positive that she's been honest with you and hopefully you have a good camhs service who will be able to provide necessary support. Unfortunately you may find that you need to really push for this, depending on your area, but be reassured that there are some really excellent people with fantastic skills working in this area. Your reasons for sharing on here similar to mine I think, as friends IRL (thankfully) don't understand what it's like to see your dc struggling with mental ill health. Sorry I can't offer magic or even wisdom, but I do understand, yes it's devastating, and often feels impossible as we try to understand the new 'normal'. But we are still the best parents for our children and the best sources of love and comfort for them. You are strong and capable. This isn't for ever and you will survive. Do try to find time to look after yourself so you can be strong for dd too. Hugs and for you. Good luck

Thank you that’s so kind. I actually feel a big relief just having written it all down and shared it ‘out loud’ so to speak.I don’t feel like I can share it with anyone else yet, it feels too big and too awful. I feel like I’m just coming to terms with it myself and trying to process it all.

Strugglingmum73 your post gave me goosebumps as so similar to my DD - also 13 - although we have been going through this for about 18 months on and off. My DD was self harming and having intrusive thoughts of harming people - she also saw an imaginary person who egged her on - resulted in an A&E admission, which finally got Camhs to get involved after previous referrals not leading to anything. Their involvement was pretty short lived, but DD seemed a lot happier so I naively thought ‘hurray, all better!’ However in Feb she said she was struggling with paranoid thoughts and getting fixated on certain things - but because she wasn’t self harming or suicidal etc, Camhs didn’t want to know. I had just started going down the route of private psychiatrist when school called me yesterday to say she was behaving very strangely/incoherent etc - another a&e admission. Long story short - camhs will give her a proper psych assessment on Tuesday. (Their first idea was that I should take her home and get an emergency GP appointment - at the time, she was talking to the walls 🙄) Sorry, this is an essay but I have no one in RL I can talk to about it.

That sounds terrifying for you. Did she have any problems before or is it out of the blue? What do you think will happen next?

Hi SouthWestmom, I’ve read the whole thread now - thanks for responding and 💐 for you. I don’t know what to think about anything tbh - we were asked to go back yesterday to ‘check-in’ with the crisis team, and she started acting strangely as soon as we got through the door - and fine again when we got home. Previously, camhs said it was behavioural and not a psychosis, which I hope is correct because it sounds less scary, but she hasn’t really had any support to work through the reasons for the behaviours. We’ve even had a lovely day out today, which I was thinking about cancelling but couldn’t face being stuck indoors worrying about everything! So we’ll see what Tursday brings xx

My only advice, this far down the line, is to think about things before agreeing or making decisions.

I haven’t been on in ages, but thought I’d post and update, as things are going quite well and I know it helped me to hear that other people’s dcs were doing well.

Ds is still on the Sertraline, dose has crept up from half the starting dose to a pretty high one, very gradually. We were informed beforehand that the dose usually has to be pretty high to be effective for OCD and he hasn’t experienced any side effects at all, which is good.

He has restarted his pychotherapy (Adapted CBT) and has made some really good headway with his most intrusive ritual that was having a bit impact on both him and other members of the family. He has managed to massively reduce the scope of the ritual, as it was a prolonged hygiene/contamination one, but still has elements he’s not ready to give up.

His college have arranged for him to do his A Levels over 3 years to take the pressure off, because every time he had a deadline it was triggering panic and anxiety and that has helped him as well.

We’ve had some very bumpy patches as, as the ssri’s have helped ease his generalised anxiety, it has freed up the headspace to start processing things that are at the root of it (severe historic bullying, low-self-esteem, issues around how he feels about his ASD, etc) and that has triggered further episodes of depression, but thankfully the dose increases have been well timed to handle that and he has been able to start exploring his feelings around those things with his therapist.

We also had a massive blip when our dog was taken seriously ill and ended up in intensive care at a specialist vet hospital for a week. The dog acts very much as an emotional support dog for him and he went completely to pieces when it happened. Thankfully the dog pulled through, although has been left with a serious lifelong auto-immune condition. We haven’t given him all the details about it, as he will only stress about the potential for relapse. Having said that, there was a big difference in how he handled his distress, yes he had a massive meltdown, screamed for hours and couldn’t bring himself down, but he actually sought me out for a hug, which I think is a first in his 17 years!

There’s still a very long way to go. He hasn’t developed any new obsessive thoughts, but has managed to squeak in two more minor-ish rituals, although they’re only mildly bothersome to him and don’t affect anyone else this time.

It helped us all to take the Psychiatrist’s advice to speak about the OCD as something other than ds1 and not lump them together. So we’re able to say, ‘we know this isn’t you, it’s the OCD, but we need to tackle this issue’ and that has taken a lot of heat out of the situation, so we’re no longer having flashpoints and family arguments and his relationship with all of us, even his annoying little sister, is greatly improved. He’s also being more sociable and spending more time downstairs with the family, rather than cloistering himself away in his bedroom.

As I said, still a long way to go, but I thought I should post and let other’s know that things can get better. When I first posted I was at my wits end and couldn’t see a future for any of us. Every day was a fight, my relationship with him was at rock-bottom and I really couldn’t go on much longer.

I have also started some basic IAPT counselling, which hasn’t been great to be honest. I also went to the GP to discuss starting an ssri myself when I was having a particularly tough time (I have my own health issues and ds2 is very poorly and out of school, so it’s not all about ds1). Unfortunately the vast majority are contraindicated with my heart meds, so ironically they prescribed sertraline for me as well. When I checked they also have a major contraindication with my meds, so I am waiting to hear back from my cardiologist before I decide whether or not to take them and in the meantime life has calmed down a bit so, while I don’t feel I actually need them right now, it would be good to know they are there if I need them in the future.

Hi moose what dose is your dc on? Mine has reached 200mg which I think is the maximum. Still an inpatient.
So glad to hear your dc is getting better and school are supportive.

The CQC report has just come through for our local CAMHS. Good for everything but responsive which is requires improvement.

They were put on an improvement action plan by children's services a year ago.

Unfuckingbelievable. I am incandescent. If incompetent, disorganised and unresponsive results in good then I'm a Dutchman. Have a week off in a couple of weeks and will write to my MP and Norman Lamb.

Sorry, life has been a bit of a train wreck with mine and my middle son’s health, so haven’t been able to come back.

Noef, he’s on 125 mg, but has had a massive relapse over his 3 week Easter holiday, because we’ve had no choice but to decorate a room in our house. (Thanks to the dog no longer being able to be vaccinated or go to kennels, which means we have had to book a dog-sitter for a forthcoming event and we had nowhere for her to sleep.). His Psych had just been to a psychopharmacology conference when we last saw her and she said that confirmed her understanding that the best dose for OCD is the highest dose that can be tolerated with no side effects, so I suspect it will go up again next time we see her.

The Easter holidays have been hell. He’s frantically googling hazards in old wallpaper and paint (already had huge obsessions around lead in paintwork, even though he knows there is none in this house, because it’s been in my family long enough for us to have the facts) and freaking himself out, convinced he’s been exposed to all sorts of nasties. I am sleeping in the room that has had the walls stripped down ready for papering, but apparently he’s the one in grave danger.

Today has been the absolute worst, we’ve had three massive shouting matches, plus lots of tears and self-loathing. I am really not well myself and I just don’t have the strength to be dealing with this right now. When he starts up late at night or in the middle of the night I am not capable of going through the long-winded flow-chart process his therapist wants us to do, assessing percentage likelihoods of the reality of danger to his health, etc. I just want him to stop, so I can get some rest and I end up shouting because he rants over everything I say.

I would say we’re right back to square one at the moment, as bad as he was seven months ago, despite the meds and 7 months working with both a psychiatrist and a psychologist who specialise in ASD/OCD together.

It feels worse somehow, having ‘had him back’ for a while, then lose him to the OCD again. I know he always struggles with holidays, but he refuses to help himself. Both therapists told him not to spend hours every day in his room on his computer, as it would be highly detrimental to his state of mind. Yet, despite us repeatedly saying the same and his brother and sister inviting him to watch films and do things with them, he has chosen to do it anyway, with the end result of him getting stuck on circular anxieties and him getting more and more depressed.

He says none of it is his fault, it’s ours for having the sheer audacious recklessness to decorate our bedroom for the first time since we moved in 16 years ago!

How do you help someone who doesn’t want to help themselves? He doesn’t do his college work, gets behind, gets anxious about it, gets in a state, then has to be bailed out. We decided to stop bailing him out, as he never has any negative consequences for not doing his work. Now college seem to have taken up the mantle though, so there are still never any consequences for him choosing not to engage or try. So many people are there to support and encourage him, he has my husband and I, his brother, his grandparents, the head of sixth form, his mentor and the TA’s, plus both therapists coming up with plans and working out ways to help him, but he still does absolutely nothing. He will agree to anything, then not do it. Make every promise under the sun, but never follow through. He seems to think he is entitled to have everyone else running around after him while he sits around doing sod all! Then when it all goes wrong, we get all the self-loathing, sobbing, I’m stupid/ugly/a waste of space etc. He sets himself up to fail, then hates himself when the inevitable happens.

He was 17 two weeks ago and it’s like having a giant, spoiled toddler in the house - only one that can google and tell you everything you say is wrong and he can prove it.

I am not proud of some of the things I’ve said to him today. They were unhelpful and came from a place of anger and exhaustion and I know he will internalise them and then throw them back at me - probably in front of his therapists. I hate this, I try so hard, then reach the end of my rope and end up being angry with both myself and him.