Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Shanghai101 yes, someone in the ED clinic suggested this too. She took control of her eating and the SH and hallucinations are therefore reduced. I just don't know how to break this cycle. If we push food, her hallucinations and SH is through the roof to her suicidal intentions become really strong and everything goes downhill or she is losing weight. I really think we just need to wait for the weight to slowly drop (she is still eating about 1800 cals per day so the weight loss is slow but steady) to a point where we can get help. I cannot get her to eat more at home in any case and neither can the meal support from the ED clinic. they just leave and tell me to make sure she eats the plan even though they have no idea to get her to eat.

For those who went private, what sort of support/help are you getting on that route? Wondered if we need to look into that but I cannot see the wood for the trees and don't know what we need. We are under the ED team, ED psychiatrist, we are under Camhs due to her poor mental health and her suicidal intentions and we are waiting for an ASD assessment (but it will be another 4-5 years due to waiting lists). I am just so lost as what to do next.

Sorry you are having such a hard time @Curlyhairedassasin
We are in a similar situation and it frustrates me that DS has to loose more weight before anything can be done to help him. Back in April when he was 73% wfh and refusing to engage with the meal plan he was almost sectioned but he managed to turn it around and started gaining. He said at the time he was only eating to avoid hospital. When he hit 80% wfh he freaked out at the weight gain and started restricting again. We are back down to 77% wfh now. We don’t actually have any diagnosis of an ED and currently the only plan seems to be two-weekly observations.
He will only eat one meal a day plus a few snacks. I think he averages around 1200 calories. Just have to watch him slowly loose more weight until he hits the point his weight is deemed low enough for intervention against his will.

I hear you all. It's so horrible isn't it. Every week they say if she loses again next week she's going to hospital. Then they give her another week. It's been a kg a week for two months now. She now rarely leaves her room and has become violent several times. I don't recognise this child at all

so sorry @WoodenTrain and @H0WDOESANYONEDOTHIS that you are in the same situation.

H0W they tell us too hospital or sectioning if no weight gain and then week on week the goal posts move. Let's see next week, let's wait for the new meds to kick in etc. I don't understand why they have to become seriously ill before real help is given :(

Curly, HOW, Wooden, it is so hard watching them decline and not being able to do anything about it
Curly, you asked about experiences of private care. We went private as our daughter was seriously ill but constantly being discharged from outpatient services and the bar for treatment was so high that I worried that she would collapse or even die before they would see her. She was 18 so in adult services, which does make a difference I believe. Hopefully, younger children would not be discharged in the same manner.

Having now had experience of NHS and private services I would say that for our daughter the therapy she has received privately has been amazing. But it has been incredibly expensive and progress has been very slow. However, because of her neurodivergence I don’t think we had an alternative. We are not out of the woods yet, but we are hopeful that she will continue to recover and have sufficient self understanding to prevent relapse, particularly in the face of future adversity.

Is anyone in the SE who could recommend private treatment/assessment and give me a ballpark for cost? So frustrated with being discharged over and over when nothing has changed.

@Curlyhairedassasin
You asked about what the services offer and more specifically for parents. The service we are using offers 2 x 1 hour sessions per week. One with the patient and one with the carer(s). The ED coach has given me the tools to get dd to eat by creating a non-judgmental and cooperative space, tackling dd’s issues and understanding what is needed for dd as an individual. She has given us the strength to really stand up to the eating disorder, to put boundaries in place, to know when to push things, when to wait, when to pull back. She also is giving me support because I have chronic fatigue and can see how I’m working beyond capacity and how dh and I are not working together (he hides away from the situation). She often gives us homework to go and prepare for the following week or targets to achieve and she’s giving him separate homework to me to get him to participate more.

In the beginning I was being asked to monitor all food intake to get an exact calorie count along with step count, weighing every single thing and she told me what dd should and shouldn’t be allowed to do. Now it’s no longer possible to count her calories but I report what she’s eaten, dd’s moods, step count, what’s happened in the family on an app (the app alone costs £500 for 12 weeks 😬)

As for dd, she’s not getting therapy atm so we are taking both sessions as they’re booked in 12 week blocks. This has put dh at a disadvantage as he can only attend one of the sessions. So we are having a couple of split sessions so dh can talk more, be encouraged to participate as he just listens to most of what I’ve done resulting in him taking a back seat. If dd were taking sessions, she would be using various techniques including relaxation, visualisation, talking therapy, EFT and probably much more but dd only had a handful of sessions including the assessment.

We first met her mid June, dd was eating 500 calories. Now dd is eating a lot, 3000 some days and enough to be able to lead a very active life. She may be going back dancing next week if she wants to and that’s several hours of intense exercise a week and that’s fine atm because she’s healthy and continues to slowly put on weight. It’s been fast with dd and everyone varies, there’s still a long way to go because dd is still really mentally ill and the reason behind her getting the ED in the first place is still there. She needs to engage in the therapy.

Above all, and unlike CAMHS, the therapy won’t stop until dd is recovered or until we need or want it to stop.

On that point, dd was discharged from CAMHS today having never had a diagnosis or a jot of help. She put on 3.6kg from her lowest point and nowhere near 100% wfh. But she looks healthy. She never fitted neatly into a box of pure anorexia and despite having ARFID tendencies, would never have been diagnosed with this as ARFID has very strict criteria and therefore dd wouldn’t fit into that. They suggested to dd (whilst we weren’t in the room) she get an assessment for autism but dd declined and said she wouldn’t be going back to CAMHS, hence the discharge. The psychiatrist said she’s 16, almost an adult so no one should be prodding her in the back. I asked if we could get dd to change her mind in the next couple of weeks but apparently this was a one time only deal and they would have difficulty justifying the autism assessment now dd is eating… except last time dd wasn’t eating enough to put her onto the waiting list for assessment as you need to be nutritionally replete. Go figure. The whole process was baffling from beginning to end but they were clear, it will have to be dd, not me next time who self refers... and that I think will never happen.

@Glitterfarti
The ED coach we are seeing is the other end of the country. She’s a long way from us, further still from you. The cost for the programme is £3700 for 12 weeks plus the £500 app on top. This includes one multi disciplinary meeting with the GP. She does zoom, this wasn’t for dd and she likes face to face for a couple of sessions in the beginning, longer for dd as she was unaware of being ill. As for services close to you, London. The Priory, perhaps there is one closer still. Face to face assessment for private CAMHS is about £800. We paid £195 to assess dd with the service we are using but the ED coach cannot diagnose so this isn’t the same process. The Priory tried to give dd online ones for £150 but dd has both anxiety and ED. The two together cannot be discussed online. In the end we didn’t pursue this. Idk the procedure if you have a diagnosis.. the Priory will be costly but they definitely do outpatient care. Orri, also London I think and they expect at least 3 half days a week of participation at just over £300 a day but they expect you to attend on site in the beginning. One day is £599 and they also expect 3 days a week. Then the UK addiction treatment centre, which quoted for in patient of 17k for 28 days in Banbury lodge. Banburylodge.com. Idk if they offer outpatient. The website for the addiction centre is ukat.com, which offered an online counsellor for dd of £800 for 10 sessions. She was more talking therapy rather than the nuts and bolts we are getting. I know someone, whose dd is now an adult and paying £70 a session for online ED talking therapy.

@Glitterfarti Mummy has given a comprehensive guide above. The only thing I can add is the approx cost of putting together your own private team - London.

initial consultation with ED psychiatrist £500 for 1 hr
Follow up appointments £250 for 30 mins
Frequency of psychiatrist appointments will vary depending on the stage of illness.

1:1 therapy c. £150 per hour or 50 mins weekly

Dietitian c. 150 per hour weekly or fortnightly depending on need.

Your GP should be able to do bloods, pulse, ECG and send to psychiatrist. Psychiatrist may weigh or your GP can do this. Either way be vigilant for cheating .

You may also want to add a family therapist to your team. Cost similar to 1:1 therapy.

if your DD doesn’t have a good relationship with the therapist then it is best to look for someone else.

@Mummyoflittledragon thanks so much for the detailed explanation of what your private therapy looks like. Glad it's working. I didn't expect it to be cheap but something like that would be totally out of my budget. But it's so much more than we ever had on the NHS even when things were classed as 'intense support'.

@Curlyhairedassasin
I am so sorry to hear this and it is very expensive. Maybe there is a service you could access for less just for your dd? I can PM you the number of the counsellor I got from ukat. She said she would charge less than £80 an hour if I went direct, idk if she’d be specialised enough for your dd. Otherwise, I did look at but not pursue treatingdisorders.com. They offer various therapies and doesn’t sound as if it has to be integrated and it is a little cheaper. So perhaps just the therapy element for either you or your dd even if not weekly. As I say, dd is not participating at all in the therapy atm so it is mostly coming from me, some from dh but I am aware that your dd will not accept to relinquish any level of control. Poor love she must be so anxious.

Curly, could you reach out to Jenny Langley at the Charlie Weller trust. She was very helpful to me when I emailed her last year. She might have some ideas and as she is the parent of a child (now young man) who suffered from AN she really gets how hard it is for carers too. She may have some ideas or know where support might be available

Thanks @Shanghai101 and @Mummyoflittledragon 🙏

@curly you could also reach out to Eva Musby, we exchanged several emails and she was very supportive and made lots of suggestions. We also attended a couple of her workshops which were very helpful. She's also recently added resources on autism and ED to her website.

@Curlyhairedassasin I am not sure where you are based but the Intensive Treatment Program ( mccaed.slam.nhs.uk/young-person-and-families/our-services/intensive-treatment-program/) at the Maudsley is brilliant and provide the type of support bring described above but on the NHS. It is a national service with the limiting factor being you need to get to Denmark Hill daily. They changed everything for my DD - it was hard, at times very hard but DD is now in early recovery. A lot of ED services don’t realise they can make referrals so thought it worth sharing.

@Brokenpoppet we are quite far up North but thank you.

We have recently been referred to this but in a different part of the country

Very best of luck x

ITP sounds fantastic. I hope they extend it to 18-25 year olds and make it available in other parts of the UK too

How are people doing? FBT is now going to fortnightly appts rather than weekly appts that we’ve had previously even although she lost weight last week. Been a battle getting her up for school every morning this week too.

Hi curly, how are you? Why have they switched to fortnightly? Is your dd making progress with the plan or is everything still the same. I've been thinking of you? Has your husband returned?
We're doing ok, I think the clinic are looking towards discharge over the next few weeks and possibly referring us on for more anxiety treatment, what that entails I've no idea. Still challenging fear foods, some much easier than others. We did have a lovely meal out in a restaurant so I'm daring to hope that we are turning a corner. School has gone well this week and snack/lunch was unsupervised and he did well. I'm proud of him and just hope he continues to improve.

Thanks @Proseccoismyfriend for asking. We are hanging in there .loads of people of our team were on annual leave so we saw different staff. Weight ins are still weekly (the post about moving to fortnightly appointments wasn't me). Weight went up a tiny but but she is now refusing to take off extra clothes at the weigh ins now so in reality, it may be a drop. In honesty, nobody knows her real weight. We were at 89/90% WFH but dropped to somewhere under 85 but the exact number is anyone's guess. We had meal support at home a few times who couldn't get her to eat the plan. she is just sticking to her amended plan. We saw the team and dietician last week and she blank point refused to increase I take and walked out of the appointment. I spoke to dietician and case manager who said she may need tube feeding to gain weight. I disagree. she needs proper therapy but they said getting a bed it next to important in a unit due to the national shortage. We see the psych next week. H came back and the next day she started SH again (that was a couple of days before school started) and we had more incidents since . She said her hallucinations are bad again and causing it but she doesn't know what sort of stress is triggering the hallucination. could be school, could be dad being bad .she genuinely isn't sure. School are short staffed so no more proper meal support either. no idea if she is eating in school. H is not talking to me. as if I did something wrong. mood at home is awful. anyhow, ED team suggested a 12 week placement at a PRU. a lot more support for the MH side of things but she would lose our on academic stuff and just do core subjects. I spoke to her about it and she is open. Maybe this is worth a shot. taking the school stress out and getting a lot of MH support and proper meal support may be worth it in the long run. she just started y9 so it's not a GCSE year. She is super bright and would catch up. I don't know, will speak to psych next week. I haven't been too well myself. I guess all the stress is getting slowly but surely under my skin. Work has been stressful too. Will see what the weight says next week and will discuss PRU with psych. tbh, I cannot see the wood for the trees. DD1 started at a new SN college this week. Big change but that seems to go smoothly as far as I can tell.

Anyone any PRU experience? It was just suggested today and I didn't expect that.

Nice to read that things look up at your end.

Sorry I tagged the wrong person!
I've no idea on pru but I'd hope your dd would get more mental health support there. Hopefully then if her weight did start to increase she may begin to climb out of the darkness. Is it possible to separate from h? I can't believe after being gone for weeks he's not speaking to you, the tension must be awful not to mention the lack of support. I do wonder if he's linked to the sh but as you say the return of school makes it slightly harder to work out.

@Proseccoismyfriend I think due to staffing issues they are keen to start “wrapping things up”. We are still in limbo somewhere between phase 1 and phase 2 of FBT. She is unable to eat breakfast on her own. DH is here but I feel very isolated as he’s on a mission to loose weight at the moment to the extent that we have meals with all the calories, protein and fat on display in the fridge. DD says it does not bother her but I’m not convinced. Seems to think the professionals will fix everything and completely denies or at least minimises the danger of anorexia.

@Cantfindthewordsddstruggling if your DD has anorexia then your H cannot talk about losing weight in front of her. Almost everything we buy has calories on it and DD is an expert on them, different brands of orange juice, crisps etc
@Curlyhairedassasin I would be inclined to leave your H to be honest. It doesn’t sound like he offers you any support and he is creating a bad atmosphere for the girls.
I think that removing all pressure from your DD is a good thing and MH support is what she needs right now to cope with anxiety (ED and possible ND). She’ll catch up academically when she is in a better place mentally.
My DD is about to restart uni but I’ve no idea how she will cope. We’ll just have to wait and see and hope that she has gained enough coping strategies to continue with recovery when all around her are eating/drinking erratically as students do

@Shanghai101 i know everything has calories on it but the prepared meals he eats have the info on the front. It’s the fact that it’s very visible that’s the issue and not the fact that it contains nutritional info if makes sense. I’ve managed to nip the discussion around weight and calories by DH around her but it should never have been an issue in the first place.