Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

thanks @Pearl97 no not ok really. He didn't turn up to the meeting, we know this because we checked his college attendance.

DH spoke to CAMHS and they wouldn't even acknowledge that he hadn't turned up, just said they couldn't tell us. Again, no guidance or help whatsoever. Despite us emailing them on Monday about DSs serious alcohol incident (we were literally on the verge of calling the police) - the lady we spoke to didn't know about it (and she is on the ED team). We told her that he intended to drink heavily probably to the point of collapse at a party this Saturday too and she seemed quite disinterested and said 'well at least his friends rang you on last weekend, hopefully they'll do that again'. We don't know whose party this is or where it is...

We've had no follow up from the initial CAMHS team that saw him (not ED related). They were supposed to be doing weekly check ins. They've not been happening either.

All our emails to CAMHS have been ignored. There was a MDT meeting on Monday with the private psychiatrist, psychologist and CAMHS. CAMHS didn't turn up. The psychiatrist has now discharged him from her service due to lack of engagement and his alcohol abuse. She's referred him back to the (useless) GP for ongoing medication review. We've no idea what's happening with his Sertraline now.

At the point now of escalating some form of complaint about CAMHS.

Any advice would be welcome. I'm actually losing it.😭

I am really sad to read your update, and really bloody angry for you. No wonder you feel like you are losing it.

I think you need to ask to speak to the team leader of the ED team. Explain that your son won’t engage and if they plan to just keep leaving him to potentially get very poorly.

Do you have a relationship with anyone at your GP practise or do you know if all of the GP’s are useless. I would book an appointment for yourself, and explain there how you are feeling and if they can help your son.

We are here for you. We will carry and help you, I just wish the ED team were as helpful xx

Ultimately unfortunately it isn’t unexpected that your ds didn’t turn up @littlebabycheeses99. He is shying away from anything or anyone, who may find him accountable. The psychiatrist has discharged and it doesn’t sound as if he’s prepared to make headway with the psychologist.

I am also infuriated for you with CAMHS. We found our local one useless. I think @Pearl97 is right about escalating within the team. To keep the pressure on and look at accountability.

I will just let you know that I made a PALS complaint about our local CAMHS. PALS was really nice and caring. However, the person, who dealt with the complaint was a colleague of the psychiatrist (who we complained about) and basically just backed her up. We didn’t have a choice as dd had discharged herself. However, for you, I would try to keep the team on side, rather than escalating as for us, it was a lot of hassle for nothing and I didn’t have the energy to counter the response.

As for what you can do, please try to stay really calm with your ds. The eating disorder is looking to throw a bomb in your household. It loves that. And if you react, it will use this and keep going. And by react, I mean anything emotional - crying, shouting, begging, etc. I get this is so hard for do.

As for getting your ds to eat, things seem really chaotic. How much is he home? And if you asked him what he wants to eat for his dinner, will he give you an answer? Can you give him an either or? When my dd was as poorly as your ds is right now, she was basically eating the same thing every day. Her rule at the time was nothing before 8pm. I would take the food to her room at 8, give it to her, say “this is your dinner, please have it” and leave.

Could you try this? I know you have the added complexity of vomiting. So you’d need to monitor that.

As for Saturday night, have you asked your ds where he is going? If you just say to him ‘After last week, it would be irresponsible for us as parents to just watch you leave and not know where you are going. So please tell us where you will be in case we need to pick you up.’ He will likely refuse. However, you can ask a second time. Just ask him for the address please.

As for the drinking, in a separate discussion, I would be tempted to say something like, ‘ we are concerned that you may be planning to drink to excess again this weekend. You are not well at the moment and may end up very ill and in hospital because of it.’ These are serious issues right now. It would be good for the 2 of you to put up a united front.

You’re there for your ds, loving and love bombing him. And ultimately that is what he needs.

To add to my post, when I say to ask your ds a second time, I mean ask him as soon as you can (probably tomorrow now) about where he’s going. And ask him again before he goes. With my dd it takes a lot, you have to sew seeds, ask for information, expect refusal. And go at it again. It’s the little and often (or when you can), sprinkling of stuff that works, sewing seeds and walking away, rather than saying it all at once. I’ve had to really learn that as my communication is the exact opposite. And I still get it wrong now.

I would consider asking your MP for help. I have also tried PALS and got nowhere. Also, you can try complaining to the trust CEO. Normally CEO complaints are dealt with properly

@Mummyoflittledragon @Pearl97 @unbuckle

Thank you. I have spoken to someone senior in the ED team today and reiterated my concerns.

She said 'I don't even know if the ED service is the right one for him' and I said 'what, you don't think he has an eating disorder?' and she said 'how do you know he has an eating disorder?' It beggars belief that she said that to me when we have been going back and forth for months with professionals documenting everything and saying how little he's eating. We had an ambulance out for goodness sake! He's regularly eating under 500 calories and he's making himself sick. His teacher commented on how poorly he was looking.

He won't let us cook him anything, he can just about make himself some noodles. He'll go in the kitchen and eat random snacks but nothing calorific. He's not having breakfast, and we don't think he's eating at college particularly.

I have sobbed and sobbed. He's not engaging with CAMHS anymore it would seem and they've said that given the lack of consent they can't update me with anything. They admitted he didn't turn up to his extended meeting yesterday and that they've called him 5 times today and not had a response. They said they would keep trying. I asked what would happen if he didn't respond and they said 'well we can't force him but ultimately it's down to him'.

I can't do this anymore.

Yes we've noticed similar with DS. He'll respond 'no' and then later on might relent and give us some information. He told us whose party it was yesterday but it's nobody we know. We still don't know where it is but will keep trying.

I've also had the 'not an eating disorder' conversation. It is a really cruel and unnecessary way for them to talk to you. Sending you strength x

@littlebabycheeses99 so sorry to hear you are having such a tough time. As a fellow parent of a 17 year old it baffles me that camhs are putting so much onus on your young person and blocking you helping. It seems irrelevant whether he ticks all the ED boxes, he clearly needs the help of their services and it's sad to hear you're having no luck in getting that help

Sending you the strength to keep showing your DS you are there for him and will support him in getting help xx

@littlebabycheeses99
I agree with @LurkyLurkyLou. Services seem to spend an awfully stupid amount of time deciding how to categorise the poor eating and refuse to help until diagnosis. Whether the lack of eating is caused by mental health issues (like poor body image, severe anxiety or depression), ADHD or autism (ADHD can make you forget to eat, the autism means you may not get hunger signals), or something else, the treatment is the same. Getting the patient to eat 3 meals 3 snacks.

As far as I can see, it’s all a box ticking exercise to decide where the money comes from for treatment… and btw my dd has or has had all of the above symptoms with her ED. And OCD tendencies, which often happens during recovery.

I am just telling you this as at the time, it was totally baffling and frightening as to why services left dd to her own devices. And we were desperate. And they then wouldn’t proceed to diagnosis or give us any advice as dd refused blood tests. So we were in the same boat as you. I’m so so sorry.

All I can say is that your ds is on the radar now, which isn’t terribly helpful. And at 17, it’s going to be hard to get your ds under control and the longer this goes on, the more difficult it will be. If he were mine, I think I would be hoping for hospitalisation for his own safety.

As for getting things under control, we did all sorts of things with dd at 16, such as physically prevent her from going out. She was in quite a deep relapse and just needed to agree to certain eating, then she could go. She tried to leave the house. She was angry, would have just blocked us and walked and walked. She’d done it before in the summer and her friend found her in the middle of a field. This time, it was winter, cold and dark and she was emaciated and we feared for her physical safety. She got violent and called the police on us. They came a few days later and treated it as a parenting decision and gave her a talking to. But it could have gone either way realistically.

At 17, I would hesitate to use this and don’t think it would have worked. I think she would have agreed, then later refused, saying it was under duress and she was near as damn an adult. Although I did physically stop her going off again last year, so at 17. She’s stopped going off like that now. But then we have stopped trying to ‘force’ eating on her as she’s an adult. And has a car.

One thing that does work with dd is to nudge her. Nudging is the Jenny Langley / dolphins stuff. I really would recommend the full 5 session course asap with Charlie Waller or the BEATS stuff. For example, I spent almost the whole of this last February half term sat on the sofa in the kitchen. Every time she came in, I said to to grab something. That turned a relapse around.

As for us, I dropped dd off at university yesterday. She refused to take food from home, but relented for a few bits. One of her friends helped us with the move. Dd hardly ate yesterday. She had the measly breakfast she’s decided to have now. Will no longer eat morning snack, so her morning intake is less than half what it was. She had a tiny portion of overnight oats and a packet of crisps from Starbucks for a late lunch. Not good.

I insisted on taking her to the supermarket with her friend before we left her. I sat in the car as a comprise. I asked her friend what she bought on the way home. And it wasn’t great. The Greek yoghurt she thinks was low fat or 0%. The coach has told me to brace myself as she’s going to lose weight this first month and will hopefully turn it around thereafter, so to try to hold my nerve.

It’s so bloody hard. I dedicated the majority of the last 2 years to getting her recovered, regularly neglecting my health and wellbeing. My house is a now a bombsite, because I spent the whole week running round with her and for her as she finally woke up and realised she needs all this stuff. So I’ve been running round getting stuff and helping her do a mountain of washing. Duvet, pillows, clothes, coats etc as a lot of her things were stained with fake tan and makeup.

I’m bushed. Yesterday I was relieved for the respite. Today I’m worried. But aware I have a couple of days for the funeral next week to get through and hopefully do some more nudging.

The gatekeeping is why i suggested the mp, because its about how services are commissioned, certainly for adults its about money and politics.

I hope you get some moments to yourself and the distance gives you peace (as well as the worry) @Mummyoflittledragon

Hi All just popping in to see how you’re all doing.

@Mummyoflittledragon I’m really sorry to hear about your Fil that must have been an awful shock and more stress on top of what is already a stressful time. I hope your dd gets on okay at uni, hopefully bring around other teens will help keep her motivated and encourage her to eat.

@littlebabycheeses99 I’m so sorry things are so terrible for you, Camhs sound beyond useless. Are you able to get him to any medical appointments for bloods and obs? I know it’s not much consolation but the hideousness towards the people trying to help the sufferer is really normal. The ED will come out fighting at any threat to it, try and hold onto the fact that it is the illness and not your ds. Your ds is in there and knows you love him very much. It’s literally impossible to say the right thing when they’re that unwell, the ED can twist pretty much any innocent comment and turn it into an attack 🤷‍♀️

Definitely complain through Camhs, what’s your ds’s GP like? Can you ask for a telephone conversation with them to reiterate your concerns?

We got back from Rome last night, we had a good time although it was v hot! Dd did well on the eating front, better than me tbh as the heat knocked my appetite on the head!

Now it’s just gearing up for uni next weekend 😳

Thank you @LurkyLurkyLou @Mummyoflittledragon @Girliefriendlikespuppies @unbuckle

Yesterday was horrendous, spent most of the day crying. Rang the doctors in the end (for me!) and a lovely doctor rang me back and was incredibly empathetic, really talked through everything with me. Asked about the family, how my DH and DD were doing given everything that was going on. Talked to me about teenagers, about how difficult they are to control, about how sometimes we need to learn to let go a little even though it feels like the wrong thing to do. How he could understand my helplessness. How I should maybe think about family therapy and therapy for myself to get through it all. He also said 'none of this is your fault, remember this'. He was SO lovely. I can't tell you how nice it was for somebody to really listen and to make so much sense. I really needed to hear it.

Today we are on high alert as DS has gone to the party - and has not told us where it is. He has also spent the morning bleaching his hair (it is now orange!).

However, prior to this someone else from CAMHS rang me. This time from the crisis team. She said she had been going over the notes and she was really concerned. Asked how concerned I was (obviously very). We talked about quite a few things, she said he hasn't been responding to calls from them or from the GP and that the GP had some worrying results that needed attention. She said if he continued to not respond then she would be looking to break confidentiality given the serious nature of everything.

So that is something at least. I believe there is a meeting on Monday.

I just need to get through the next few hours and get him home safe.

@Mummyoflittledragon I'm sorry that your DD has not been eating great prior to uni but hoping this is a blip and after a few weeks of settling in she might start to look after herself a little more.

I hope you manage to get through the next week ok with the funeral etc, and that your family can support one another.

@Girliefriendlikespuppies glad you had a nice time in Rome, it's one of my favourite places. It's good your DD managed to eat well too.

@littlebabycheeses99 I’d ask them about whether they can section your ds for hospital treatment, I’m glad the Dr and crisis team person listened to you.

Dd now has a lurgy, high temp and sore throat. Not ideal so close to starting uni.

DH has just had a call from someone at the party to say DS was unconscious on the settee so we've been in panic mode. Anyway turns out he was asleep, and managed to get to the toilet to be sick. DH has now picked him up, he's been hurling abuse which is nice - but doesn't seem as drunk as last week.

Have called 111 and expecting a call back 'within 10 hours' apparently! I'm not going to stay awake for their call, but wanted to log it anyway.

Fun.

@littlebabycheeses99
It sounds as if you’ve been through such a rollercoaster. I hope your ds is going to be ok and that 111 when they call you back, take your ds’s low intake into consideration.

I am so pleased you got to speak to a couple of empathic people on Friday. Our GP is lovely and has been so gentle with dd. Having a medical professional on your side is so important for your mental health, even if they can’t do much.

Thanks @littlebabycheeses99 and @unbuckle. I do hope dd will start to eat with those around her. As for me, I’m just so exhausted from running around for her. I’ve done everything I can. I just need to rest for a few days as the funeral will be hectic.

Thanks @Girliefriendlikespuppies i hope your dd is feeling better soon. She has a few days to recover before she’s off.

@littlebabycheeses99 I am so pleased you called the doctor for yourself. It is lovely to read that someone is finally listening to you.

it’s so annoying it has taken the crisis team to realise that he needs help. He has shown you again tonight that he is putting himself in danger almost daily. I think on Monday they will start to finally help you all. This had been hell for you, but I think help is finally on its way. I hope 111 call back, but you got some sleep first.

Thank you @Mummyoflittledragon and @Pearl97

Yes crossing my fingers for Monday. I will ring the crisis team in a few hours and log it all too.

Can't sleep now but have managed a few hours.

DD is off to Uni on Friday so have quite a bit to sort this week for that. I'm sad that DS is taking the shine off her excitement, I know she worries for him.

@Girliefriendlikespuppies hope your DD can rest and feels better in a few days.

@littlebabycheeses99
How is your ds today? Maybe he’s still in bed. How are you?

I hope the prep goes well for your dd and that she isn’t like mine, who left everything to the last minute. Hopefully she will meet some great new friends to help her take her mind off things a little.

Do try and find some time to do something nice for yourself this week. Something you enjoy doing. With your dd moving out and (hopefully) CAMHS stepping up, it’s going to be a lot for you all to handle.

How is everyone?

I agree with @Mummyoflittledragon @littlebabycheeses99 this is a big week for you all. Is your daughter excited. It’s such a mixed emotion time as a mum, you must be so proud of her!

How are you doing @Weightlossworried I hope the team are supporting you and your daughter is enjoying college.

@Mummyoflittledragon I hope you’re going to take some of your own advice and look after yourself. I reallt hope DD is enjoying uni. I remember putting on so much weight at the start of term each year. I hope your daughter goes along with all of the eating and midnight meals after clubbing. It really can become their new normal and she may start to realise how much you have helped her and how right you were!

thinking of everyone. I hope those that haven’t posted in a while are ok. I don’t want to tag you as I know we all need space sometimes, but I’m thinking of you all xx

@littlebabycheeses99 I'm so very glad to hear you spoke to a sympathetic doctor and that the crisis team seem to be finally realising just how unwell your ds is.

I hope everyone is settling in ok at uni.

We are doing ok, had a lovely weekend away. The first weekend away where DD was absolutely fine all weekend despite some challenges. She's enjoying college and seems to be less tired this week than the first week which is promising.

We didn't have an appointment last week but have one Thursday, just for obs. I'm just enjoying the relative peace right now as past experience tells me it might not last!

Thank you @Pearl97 @Mummyoflittledragon @Weightlossworried

Had a call on Sunday from the crisis team just to say there was 'a plan in place' - they wouldn't elaborate.

Had call from college safeguarding yesterday to say they'd spoken to DS about CAMHS and the need to attend his appointments from a medical perspective. They've told him he can't continue to attend college if they don't know that he is medically safe to do so. Apparently they saw some flashes of anger and defiance - and have said that he is trying to 'manage conversations' and control the narrative. Which sounds about right - I'm glad they are seeing what we see at home to be honest. The safeguarding lady has been helpful and knowledgeable and I feel she is on our side which is good - however this may mean that DS won't engage with her because he will feel threatened. So we'll see.

Still feeling helpless tbh, just a case of waiting I suppose - for either him to become ill and need hospital treatment or for someone to actually do something concrete.

@Weightlossworried glad you had a lovely weekend away

@Mummyoflittledragon how is your DD getting on? Have you heard much from her?

@Pearl97
I’m kind of doing ok. Thanks for asking. I have had some time to rest thanks, yes. Still had a fair amount to do after dropping dd off, including getting the house back in order, helping dh out where I can with the funeral and we have a couple of dogs, who are a bit pampered, but all in all far easier than dd.

@littlebabycheeses99 @Pearl97
I have heard from dd a fair bit. She seems to be having a lot of fun and has made some friends. She organised with one of the girls on her course, who she hit it off with, to be in the same apartment. And she’s made friends with at least one other girl in the apartment. Personally it reminds me of prison cells - 10 tiny rooms attached to a kitchen. But I’m not 18!

I would love to think dd is eating well. I’m not sure though. If I was to guess, I’d say food is a necessary annoyance, something she would easily forgo if she could. I saw 3 pot noodles at the top of one of her bags and she doesn’t intend to cook anything proper right now. I did start to teach her pre ED, but I imagine that’s all forgotten. She’s very ARFID driven, so any cooking is all beige and ready meals etc.

She does drink cocktails, not to excess, so I know she will have had calories there to hopefully make up for any lack of eating (apart from that, she doesn’t really drink calories). And yes, it would be nice if she were to gain weight. However, the did warn me she will likely lose for the first month and to try to keep calm about that.

I’d love it if she could finally see what I’ve been trying to do. Unfortunately, we are at a stage, where she still thinks I’m having a go at her when I try to talk to her about food. She was spectacularly vile to me on Friday, because I talked food a lot. Since then, I’ve been trying to keep things light, because dh can’t do the stress right now. And she’s coming back tomorrow, so we can travel over for the funeral. That all needs to be smooth, rather than difficult.

@littlebabycheeses99
It is brilliant that the college are ready to act to protect your ds. The safeguarding lady sounds great and as though she has him sussed. As she isn’t bound by the same legalities as CAMHS, perhaps she will prove more helpful. And maybe she will (legally) be allowed to give you more information on what CAMHS are thinking. Hopefully he will want to eat and cooperate more than to not be allowed to attend college.

Much as you are feeling helpless, things are starting to move. And this will all hopefully be nudging your ds forward to help himself. And if not, CAMHS are starting finally to put their foot down with him. I really hope something happens soon. I really feel for you.

@Weightlossworried
That is all absolutely fantastic news. I hope this is a real turning point for your dd and that she continues to enjoy college.

Is everyone else ok? I do hope so.