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?

I don't know how to handle this anymore. I've been up all night with my son again.
He can't sleep and is in a real state about college. He can't go back to college because he's obsessed with getting the 'right' amount of sleep which has become a vicious circle as the worry is stopping him sleeping. And he's frustrated at himself for giving up college when all the 'others can manage to get on with it'. He says his life is pointless and worthless. He doesn't have any real friends or a social life because of the ocd.
I'm trying to be positive but I'm exhausted and don't know what to say to him anymore. It's so distressing to watch him suffer.

Hey fatpord how are you today?
I'm sort of disengaging today. Cannot face it anymore, can't face talking to him, just want him to be normal.

Hi SouthWestmom
I’m walking on eggshells waiting for it to start again. I know there’s no point going to bed.
They’re never going to be normal are they? How on earth are they going to get through life? I don’t feel like I can face it anymore either.
I read other posts about parents who hate the school run and making sandwiches and I think wtf how is it fair that your only worry is sorting out lunch. I feel very resentful.
Where did I go wrong?

I don't know. We have lots of meetings but no therapy. So he's been getting worse for the last months.

I'm very resentful, bitter, etc etc which makes me not a nice person. But living with someone like this is shitty.

So, I have no clue. I just have no answers for anything.

Any updates from anyone?

We are worse - no therapy has started (planned soon) and in the intervening months he has just deteriorated. Now not at school.

My DD is getting on OK with her medication, so that's a positive, I hope.

The anorexia still has tight hold of her though. She has been eating very little and seems disgusted with herself whenever she does eat. She was, however, rather worried to hear that she was not far off being admitted to a hospital unit, which would likely take her out of school for enough time to necessitate repeating the academic year, which she is desperate to avoid happening. We have had several sessions at the Eating Disorders Clinic and she is generally cooperative. I have had to take charge of supervising her breakfast, making her packed lunch for school and serving her evening meal every day. It is like having a 16 year old toddler in that respect.

At least she is trying to cooperate though. She is also desperate to go on the school exchange trip to Italy, which is in October, and had to be told that as we are soon to pay further installments we will need (both the school and I) to see sustained progress because in all fairness neither party can foist this worry and responsibility onto an Italian family. She knows therefore, that no progress would mean me having to pull her from the trip.

I felt very mean having to use that angle on her, but with more payments for the trip due almost imminently and the balance at the end of April I no longer had any choice. I framed it as something she must work towards, and for now it may be having some effect.

Things are going slowly. Sometimes I feel like a horrid and mean mum insisting on her eating as though she was a toddler, and wanting to know if (hopefully) she ate her packed lunch. But what can you do?

When dd was restricting food (didn't reach anorexia but did slip to 7st 8lb and she's a solid build) I got into a groove of having the fridge stocked with favourites including choc and banana milk and dropping into starbucks/costa with her and encouraging high cal stuff. This was at the height of the cutting when she cd have gone either way.

I have nearly posted here so many times, but chickened out. Partly because it’s all so long-winded and complicated that it seems impossible to explain and partly because I feel like expressing how I am feeling about my son’s mental health issues somehow makes those feelings more real and I feel bad enough about them already.

Basically, my 16 year old son (ASD) has, after years of fighting and eventually having to go private, been diagnosed with severe OCD. His psychiatrist says, in reality, he is probably in the ‘extreme’ category, because of the complexity of the way his OCD is affected by his ASD and the main focus of his obsessions, but that he scored just shy of it on the questionnaires. His behaviour is so hard to deal with and has been made so much worse by how long CAMHS have messed us about. We have been told that if medication doesn’t enable him to engage with therapy there are no options left but hospitalisation and that terrifies me, especially with it in the press at the moment.

I ended up posting here today because I am totally angry and upset with myself for getting cross with him this morning. It’s just so hard when you’re trying everything you can to help them, desperate to keep them out of hospital and it feels as though they don’t want to help themselves. I know it’s not that clear-cut. He does want to be better and live a more ‘normal’ life, whatever that is, but he feels like he can’t do that and be safe, so he chooses safety every time and that means allowing his OCD to have control over him. I am terrified he is going to end up hospitalised and we are going to be powerless to help him.

I am not well myself and have another 14 year old son with similar health problems to mine, that mean he is out of school and being home tutored by the LA and sometimes it’s just too much. My own health issues are massively exacerbated by stress, so as my eldest’s mh issues get worse, so do my physical ones, which is a vicious cycle that we don’t seem to be able to break.

We are paying out a minimum of £400 a month for his care (private Clinical Psychologist and private Psychiatrist) at the moment and he hasn’t really started therapy yet. If anything changes with my husband’s job we won’t be able to afford to continue and CAMHS screwed everything up recently resulting in him being bumped to the bottom of the list after a 12 month wait, so we have no-where else to go.

OCD is just so all consuming, not just for the person who has it, but for the whole family. Our lives often revolved around him anyway, in order to manage his ASD, but this is a whole new level and now he’s diagnosed, looking back I can see we have been spiralling downwards, with him at the centre, into the car-crash that our lives have become for so long with no help from anyone for years now. Every time I think we have hit rock bottom a new low seems to appear and I am not sure how much more any of us can take.

@moosemama @Topseyt

Welcome to moose - OCD is a bloody nightmare and like some hideous bully. I'm sorry you are having to pay, can you apply for DLA?

Topseyt - I don't have any advice, it terrifies me because you can get ill so quickly and as parents if these kids we have to try to stay calm and unworried and it's so difficult. I think maybe just follow professional advice? Have you tried any helplines?

We are dire here. From a lovely functioning child a year ago to this nightmare situation. I am I think in shock.

Moose, welcome.

Try not to feel too bad. You are human, these things are frustrating, isolating and hard to deal with. We all have our limits. I've got annoyed with DD too at times. Especially if I think she is trying a new way to sneak the fact that she hasn't been eating enough past me.

CAMHS is luck of the draw. It is seriously under resourced, and for us has veered wildly over the years between reasonably OK and extremely shit. We did consider going private because DH's family medical insurance (from work) would have covered it. It just so happened though that on this occasion CAMHS came through first and has been better than previously (different clinic from before).

I don't have any experience of OCD, but hope you all get more of the support needed.

DD's anorexia has almost driven me batty. She seems to think that she is disgusting when she eats. At least she is starting to try harder now, though is also becoming pedantic about what she will eat with what.

At least with a physical illness there's less blame involved. When my son had meningitis it didn't occur to me to be furious with him. With the OCD I am angry all the time.

No words just p and oodles of love and good wishes.

Thanks @OhTheRoses
For your continuing good wishes and words of support as someone further down the line

Sorry it's so awful for you at the moment @moose @neouf. OCD does take over the whole family's lives. It takes all your strength.
The trouble is that their thoughts don't make sense and it's so frustrating. And sometimes it's difficult to make out what's teenage bastard-ness and what's the ocd. I'm afraid I lose it quite often and then feel so guilty.
Got so desperate last week that I was crushing sleeping tablets up in his food so he wasn't up all night!
His psychiatrist appointment was last week. She said his OCD was severe and is going to work him up to 60mg of fluoxetine. Having to pay privately sticks in my gullet, but we are so desperate.
Love to you all

Mine has severe ocd but won't take meds at all. We have therapy soon - first in months so I'm hopeful.

Thank you everyone. It’s good to know we aren’t alone in all this.

Topseyt yesterday’s upset was because he was trying to be sneaky in the hope I wouldn’t notice he was avoiding something related to his OCD. Unfortunately, having ASD, sneakiness isn’t his strong point, so he was caught red-handed. The problem is, if I let things like that go, they escalate, become huge and get incorporated into his other obsessions. So, I have to nip them in the bud and try using the back-chaining method his psychologist uses to get him to accept. Of course, being a teenager, the response is usually a delightful mix of backchat with a good dollop of ASD bluntness thrown in for good measure and when it’s 6.00 am, I am in pain, exhausted and barely awake, I just don’t have the resources not to react.

OCD is repetitive enough, but add in the repetitive aspect of ASD and you end up with constant, never ending cycles of the same things being done and said with the same results and responses every time. The same arguments on a loop 24/7. I honestly feel like I am losing my own sanity sometimes as we go round and round in ever decreasing circles.

His thought processes definitely don’t make sense and if you say that, he knows, but he can’t help it, which is why I get cross with myself if I get angry with him. It’s not his fault, but sometimes it feels like he doesn’t even want to try and help himself. Which in a way he doesn’t, because if it comes down to it, he will choose being safe (his OCD perception of safe) over pretty much anything else.

fatpord we have exactly that problem. What’s OCD, what’s ASD and what is typical teenageryness. It’s impossible to untangle it all and even his therapists are struggling to make sense of it and find a way forwards.

When we saw the Psychiatrist initially it was an emergency situation and she wanted him on a fast acting anti anxiety med to bring things down quickly. After agreeing to try it during the session, he then flatly refused to take it, even though she started him on a quarter of the starting therapeutic dose. Eventually, after a huge row he took one half-pill and the ensuing meltdown was epic. Probably the worst he’s ever had. So that was that. He is still convinced he has permanently damaged his brain just from that one dose at less than a quarter of the therapeutic dose.

She then tried starting him on half the therapeutic starting dose of Sertraline. Again he refused to take it, lots of anger and distress, but eventually he conceded because she told him that if he doesn’t work with us to get him better in the community, his OCD is so severe that the only other option is hospitalisation, which will mean we all, including him, lose what little control we have over this situation. (We were at the point of CAMHS emergency line sending an ambulance back in October.) He did just over a month at half the therapeutic dose, then two weeks ago, again only after lots of discussion, agreed to try 50mg a day. She wants him slowly titrated up to 100, but honestly, I can’t see him agreeing to that, as we already have regular upsets about how he/we are ‘poisoning his brain and destroying his intellect’.

That said, there has been a slight shift in him since he started the 50mg. He’s less depressed, generally happier than he has been in a long time and he seems less ambiently anxious, Last night he actually admitted that he does feel like it’s helping, so that’s a tiny chink of light for the first time in as long as I can remember.

He started adjusted CBT (to take into consideration his ASD) last September, but he could not make any progress at all with his anxiety levels as high as they were and we were paying a lot of money for two hour sessions which consisted of him ruminating repeatedly about whatever came up in the first five minutes and making no progress. So his Clinical Psychologist referred him to the Psychiatrist to try medication as, although she is extremely experienced in both ASD and OCD, she says he is the most complex case she has come across and she didn’t feel she could help him while he was in the state he was in. I sit in on his sessions, with his agreement, as she’s found that works best for his profile. If things improve, eventually I will gradually leave he session for longer and longer until he’s on his own for then and then we just have a quick catch up at the end to get me up to speed with what work he needs to do before the next session. So, we haven’t seen her since November and she and the Psychiatrist are liaising about when to restart her sessions with him.

When we started out his CBT was covered by my husband’s work insurance, but he has since gone self-employed, so we are now self-funding. I need to apply for DLA for my middle son and PIP for my eldest, but I can’t face yet another battle. It’s so wrong that we have to pay privately to get decent care. The situation is the same for many/most people with the physical conditions my other son and I have. Fortunately, after a bumpy start, we have been lucky with my middle son’s medical care. Wish the same could be said for his educational support, but that’s another story.

Oops, sorry massive brain dump there - should have previewed and edited!

There are no shoulds in this world moose. Only coulds if facilitated by ace care.

Baby steps and giant kindness and understanding peppered with patience when you can and love --when you have the strength.

Remember it happens because of how they are wired not because you did anything wrong.

Be kind to yourselves and it will help you be kind to them and think kind which is sometimes v hard.

I once effed and ranted at a poor sod from the Samaritans because I needed an effing good rant and had to keep the despair of the rant bottled at home. I cpuld have strangled the earnest git tbh but the rant, on the drive befor the key turned, was cathartic. Even if I walked from car to house muttering "you wanker" under my breath.

Poor Samaritan 😂

How are we all doing then?

Mine is going downhill all the time - everything I worried about has happened so I'm kind of 'what's left' now. Run out of steam but redirecting myself by looking up NICE guidelines and support groups .

How is everyone? moose how is the medication and therapy going? SouthWestmom what's been happening with yours?

Mine is now on medication. We've upped his dose and it has made a difference. We are actually having some good (ish) days - a taster of normality. I don't want to get too hopeful though I know it can all go downhill within seconds.
He's not gone in to college this term. He's still obsessing about the amount and quality of sleep. Not convinced the therapist is making any progress but my husband thinks it's helping so bang goes our holiday money! At least I get an hour where I don't have to listen to the sound of my own voice.

DD's mood is lifting now that the medication is kicking in. I am glad about that, but the anorexia still has it's claws sunk into her. Getting it onto repeat prescription at my GP's surgery has proven to be quite a feat in itself. It required a letter from the psychiatrist who had originally started her on it at the Eating Disorders Clinic. That was sent just before Christmas, I was assured. It apparently didn't arrive for several weeks, meaning that her prescriptions were being issued 20 miles away from us. It didn't take me long to get pissed off with that malarkey though. I demanded a copy of the letter from the clinic and took it to the surgery myself as it seemed the only way forward.

DD is cooperating and has gained some weight, which is good, but I have to supervise her eating as much as I can. She has a hard time convincing herself that eating is good and necessary. If left to her own devices she would serve a portion that wouldn't be enough to keep a bird going.

I provide her with a packed lunch for school as that seems to work best. Sandwich (two rounds of bread and filling) with a yogurt, cereal bar and a piece of fruit. She thinks it is enormous. I think it is normal for someone who has a long and busy day, leaving home at 7.15am and getting back around 5pm. She promises me that she eats it though, and the scales at the Eating Disorders Clinic suggest that she is telling the truth, at least mostly.

Hoping everyone else here is getting the necessary support and help.

Sorry, just venting a bit. Hope all of you are OK.

Hi, can I join you all please. My nearly 12 year old has mental health issues, lots of anxiety, school refusal. all very difficult. So sorry you are all going through similar, so hard struggling, to be honest today just want him to be normal. Will give the background so as to not dripfeed.

When he was a little boy he was fine, no school problems, sociable, sporty, no separation anxiety all fine. Sadly when he was 6 (nearly 7) a close friend of mine who he called Auntie died suddenly A year later his Nanna who he adored also died suddenly. Very hard on all of us. it was my DH's Mum, my Mum died in 2002, my Dad is still alive but relationship has been v difficult, he has a partner who has historically made contact v difficult, she now has dementia. My Dad was also v ill with pneumonia in October, has made a good recovery, but this is the 4th time he has cheated death (kids were not around the other three times). DH1 had a very difficult year 6, problems started slightly in year 5 when he didn't like his teacher. He had some bullying going on and refused school quite a bit, attendance at the end of the year was 89% He had problems sleeping and I decided Christmas 2017 to get help for him. Liaised with school and he had support from the family support worker, also went to the GP to get CAHMS referral. Was offered a parenting course, went to the first session but was unable to attend the others due to childcare issues (DH works shifts, no family support, noone I could ask, was going to ask a friend but DS fell out with his daughter). He left primary, started secondary in September, at first it was all good, but with the odd bit of school refusal. Have bee liaising with the school about his anxiety and he has been referred to ELSA and also for regular meetings with the pastors who come in (not a religious school by the way). It is very difficult (almost impossible to get him to the GP), but last Monday he was sent home with tummy ache, constipation. Tried the usual stuff then struggled but got him to the GP on Friday, he is now on Movicol. He has been off school now for 8 days, still having toilet problems. I have been in touch with school (who obviously want him back in) and they have put measures in place, a toilet pass, somwhere private to go, his head of year and the medical room know. He is refusing to go back to school. Huge battles with him this morning, forcing him to ge dressed, dragging him, I know I'm wrong but I lost my temper and said stuff I shouldn't have. Try so hard to be patient and loving but right now can hardly speak to him. Waiting for school to phone me back. Have a follow up GP appointment and another appointment to do a new CAHMs referral. All so hard, dont want to sound self-pitying but dont know what the fuck I have done to deserve it. DH and I hardly get any time together, DH works shifts and DS's sleep is difficult. Have another DS who is nearly 9 who is normal in comparison, pretty happy go lucky with the odd bit of cheek. I am self-employed so luckily have some flexibility but still v difficult. Hardly feel comfortable talking to most of my closest friends cause they have a better deal, have felt judged sometimes in the past. Luckily I have a couple of friends who have been through similar who I can talk to. Just so scared, where is this going to end, fost care, suicide, so scared this is it. I know this isn't coming across in this thread but myself and my DH do love our DS dearly and will do anything for him. He is quite academic, v sporty, has lots going for him, btw I'm not a pushy Mum, dont really care about achievements. I just hate the way that our family life now revolves around him. How the fuck did it come to this? Well done if you have got that far.

You are amongst friends here, Octopus. You have clearly been going through a lot.

We have all been going through it with our children in different ways. I think you are right approaching your GP. I hope you are able to get the support you need.

It is hard when people who you would have thought of as friends judge you. They have not walked a mile in your shoes, or I highly doubt it anyway.

Hi all

Topseyt I'm glad the meds are helping.
Hi octopus I'm sorry you have to join us but you are very welcome.

I think we should accept that we are trying out best but we are only human. Every time I blow up at my child i remember to walk back again and tell him I'm just a person and I love him.

We are now looking at a section which is terrifying. I'm not really talking to real people about this because they just suggest things like mindfulness or local support groups and we are waaaaayyyyy past that 😂.

School are fine thank goodness.

Oh Noef, sorry things aren't going well. I do hope that something "clicks" soon for you all.

Thankfully we haven't had to consider sections, though in the beginning and before medication I really couldn't see a way forward for DD and it was scary. That was the time I almost took her to A & E, and I did wonder if they might talk about sectioning her because we just seemed to be getting nowhere.

and in order for you and for Octopus.