Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Sending best wishes from afar @GrannyRoberts . It's so tough, and I really do think it's harder on us as carers than it is on them. Hang on in there and make time for yourself. I couldn't believe how it would help in the early days, but it really really does. I'm glad you feel calmer this evening. One day at a time x

One day at the time and keep vigilant. Things change so quickly

One day at the time and keep vigilant. Things change so quickly

I second that. On a Sat, obs (bloods, ECG, heart rate) were fine when we went to a&e and 2 days later we went in via ambulance heading towards the high dependency ward. Scary how quickly things can escalate. I wouldn't feel too reassured by bloods taken a couple of weeks ago esp given the rate of weightloss. Definitely be extra vigilant!

Oh bloody hell! Unit have found bags of Fortisip, food in drawers and a razor in DD:s room - so she has been put on all day room lock. She has been refusing all fluids and apparently nearly fainted so has been removed from education - (She started back at education last week and I was feeling really positive about it because she hadn't engaged for about 6 months.) And can't walk in the grounds because of compulsive exercising. And she's lost 400g. Not the best day.

Oh no Nan 😢 how does that even happen on a unit where I'm assuming they must be really vigilant for hiding food? I'm so sorry, it must be so stressful.

I'm worried dd is on a bit of a down turn, she's definitely eating a bit less and I think her clothes look looser 😕

I've got two weeks off from next week so will have a much clearer idea of what's going on then.

Nan, how can something like this happen? I know I have missed things like this at home but they should be the experts???

@Girliefriendlikespuppies - Sorry to hear about your suspicions - but at least you are onto it. You've done do well - I'm sure you can turn it around with your 2 weeks off.
I'm not actually mad at the unit - at least they found the stuff. I am terrified at how strong DD's ED is though. I mean, refusing water???? Pacing when there are staff with her and watching her (because of the absconscion). We were so relieved when she got a Tier 4 place, but I feel sick now. And I'm terrified about what happens when she hits 18 and moves to adult services where we won't be able to advocate for her.

Have you talked to the unit about what happens when she turns 18 Nan? She sounds so ill I can't imagine she would be allowed to discharge herself. It is terrifying that at 18 they are deemed competent adults when actually 18 is still so young.

oh nan really sorry to hear this. Your DD's ED seems to be to be incredibly strong. How worrying for you.

DD is 12 so not sure what happens when they are older but can they just discharge themselves when they are 18 despite being so ill?

Sorry @NanFlanders that the professionals have let your DD down. I don’t know what happens at 18 - my DD isn’t far away from becoming an ‘adult’, whilst her behaviours are very immature.

@Girliefriendlikespuppies my DD is also slipping with the food, we don’t weigh but it is my instinct. How do you propose to pick this up - with more snacks or higher calorific dinners? DH is at home with DD but he is settled in that she is weight restored and eating, I am of the mindset that a few hundred calories lost each day will send us downhill quickly - DD is not carrying the weight to lose.

Nan it's unbelievable how sneaky ED can be to even get past the professionals. I hope now they've found out what's going on they'll ensure it doesn't happen again. I really feel for you and your poor dd. You deserve a break more than anyone x

Girlie It's good you're noticing and I hope you can turn it around again quickly. Is dd able to verbalise how she's feeling? I think the most frustrating thing for me is that I can see when dd is struggling but we can't have a conversation about it. I just have to sneakily increase portions and add fats and hope that it helps her mind.

Nan - am so sorry to hear of more difficulties - I hope the unit's response is helpful.

To those who have asked about discharge at 18 -here is what happened to us

In the run up to her 18th (i'd say about 6 months out) we had a lot more resources/interventions thrown at us.

We were pointy elbowed in saying that we would not accept a discharge at 18 and for DD to have to access adults as a 'new flyer' so to speak (at this point she would not have met the BMI threshold for adults yet her recovery was established enough so we feared discharge and go to the back of the queue)

CAMHS agreed that she could stay with them for 6 weeks past her 18th and the month prior to 18th and period afterwards would see a transition to adults. During this period she had a new therapist who achieved more in her few sessions with DD than the rest of her CAMHS time

At 6 weeks post 18, DD had met with adults caseworker but we had a curveball thrown insofar as caseworker was then off sick so contact paused. Then she had to start mat leave early so we transferred to another caseworker.

By this point, DD was of the mindset that her recovery would be hampered by being in ED services - she felt that everything around her telling her she had an ED would reinforce ED's power. She preferred a 'fake it till you make it' approach so she moved into Adults MH disorder rather than ED team with an open door approach.

Then (about 6 months later when DD felt she needed some support) it went pear shaped as the MH case worker told DD her weight in 5 mins of their first meeting - 😡

in positive news, she's in a much much better place now.

@myrtleWilson That's really helpful info - and I can be quite sharp-elbowed too! When we originally engaged with the ED community team, they told us that they could stay engaged until 19 and a half, but now they are saying 18. I know she has to be discharged from the Unit at 18 because adolescents and 'adults' can't be on the same ward for safeguarding reasons. DH and I have been trying to get legal advice on getting either lasting power of attorney or deputyship under the Court of Protection, so we can at least advocate for her, but I understand DD has to consent to a mental capacity assessment. I might be catastrophising here, but it really brought me up short when there was the discussion of her being sent home after her absconsion.

Can I ask for advice re going back to school?

DD was supposed to return today on a part time schedule (until lunch - i.e. having snack at school) after 2 months off. She has had a good weight recovery so far.

We had a teams call with school and ED clinic to discuss support (basically just someone sitting with her to make sure she eats). First day back to school and just got a call. The teacher didn't want to watch her like a hawk in case it makes DD uncomfortable and suddenly noted (after not looking) that the food had disappeared from the lunch box. Was all hidden in her backpack and not eaten.

Teacher was surprised she would hide food (scream 🤯). We spelled it out in the call yesterday. I have contacted the ED team to see what they suggest but wanted to pick your brains.

Would you give it another go? Stop school right away? DD was doing so well eating wise so not sure what happened. This is the first proper refusal in a long time but feels like a massive setback.

Any words if wisdom as to how to approach it practically are much appreciated.

Curly. It sounds like the school are willing to help and it's a shame there was an issue the first time but as we all know it takes time to get to grips with feeding. I'd give it another go as the teacher has now seen the ED first hand and can understand the need to watch dd properly. I presume this is her snack at break time? Could you suggest a cartoon or something on an ipad in front of them as distraction and to make feel more comfortable eating? My dd always finds it easier to eat in front of tv or something on her phone. Establishing a routine that works is really important.

I've read so many times that staying in education (if they are well enough) is really important in recovery.
Unfortunately my dd didn't manage to go back to school as it was too difficult for her after a long time being away. Its one of my regrets that myself and the school didn't try harder to facilitate her eating to keep her in school.

Thanks bagpuss, yes it is the morning snack time. They allowed her to take a friend into the staff room to make her more comfortable. You are probably right, school need to learn how to deal with it. We have been doing it for ages and still don't get meal support right every time.

DD absolutely wants to be back in school so this is something we are really trying to support. I don't think being at home all day with some online learning is helping her or jet MH at all.

Tbh curly the only real way to police snacks and lunch at school is to supervise them yourself, teachers just won't be as vigilant as you would be and your dd is still early in the refeeding journey. That said it must only be a few weeks until the summer hols so maybe just plod through to then.

Nan I really feel for you and your family, it's been hell and it is mind blowing the unit won't keep her when she's 18.

Nomore I'm keeping a close eye and being stricter with portions and how much food she's 'allowed' to leave. Today we were in town and went to Greggs for lunch, she picked a tuna Mayo roll and wanted a lower calorie bag of crisps and cake which I refused. She backed down pretty quickly with the crisps and I chose a cake for her. I realised today that the reason she always chooses a capri sun to drink is because they have about 3 calories in them 🙄 so that's another battle to have.

It's so hard to be on her all the time, she also has a break down trying on clothes as she looks 'fat and ugly' in everything despite the fact she actually looked beautiful.

It's heartbreaking 💔

Anyway on a more positive note she has s job interview tomorrow so I'm hoping she gets that as that will give her something to do over the summer.

@NanFlanders so sorry to hear about your DD. It must be incredibly frightening for you all. She's so lucky to have you fighting for her. I hope you can get some positive resolution on what happens when she turns 18.

@Girliefriendlikespuppies so frustrating when they always choose the lower cal / smaller meal. I was buying boxes of Capri Sun for home until I clocked the calorie content - wondered why DD was keen on those.

We’re stuck where only if DH or I are supervising are the correct food / portion choices made.

Good luck with the job - is it in a food establishment, all part time jobs in our town seem to be in catering / restaurants; not sure how I feel about DD working with food - I know I’ll get ‘I’ve eaten in work’.

(Deep sigh)

Returning to the thread after a couple of years as dd1 is has relapsed for the third time. Both previous times she was never severe enough for hospitalisation and seemed to just 'snap out of it' after a few months, but now she is 19 and I can't see a way ahead if she doesn't agree to come to the GP with me.

She let me weigh her and she is now at 77% wfh, and still losing. This time around she has cloaked her ED in a mania for 'healthy eating' but she knows jack shit about nutrition and thinks just eating lots of fruit, veg and pulses is a brilliant diet that can't possibly have any adverse consequences.

Just trying to rally some strength to deal with this, but I feel sick with anxiety about it.

@GrannyRoberts. I've been thinking about you and DD a lot. Your appointment is tomorrow, isn't it? I do hope you get the right help.

Nomore I know right, how do they even make drinks with so few calories in?!! The interview is at a shoe shop, not sure how well dd would manage a food place tbh.

Zitti welcome but sorry you've had to find us, have you got any leverage over your dd to get her to the dr or to eat?

It is so much harder the older they get.

Is she studying or working? Have you done FBT previously?

You could ring the dr on her behalf I suppose and ask they ring her for a check up or something?

Granny good luck tomorrow, hope it goes okay.

Thanks so much for the (re) welcome @Girliefriendlikespuppies . I'm sad to recognise a lot of names I remember from dd's last go-round. Sending all my best re-feeding vibes to you all.

It's a complex picture with DD. We did FBT before and it was quite effective (it worked pretty well actually) but she was presenting differently then and she was a child... She has autism and is emotionally more like a 12/13 year old than a 19 year old, but of course the law says different . She didn't get the A level results she wanted last year and I thought some time out would be best for her, to get some good therapy and recover from the burn-out she suffered as a result of years of masking at school. She seems to be happy with her private therapist, though they've only had 2 sessions (waiting list is almost as bad as NHS), but CAMHS were never able to make any headway with her. She has very deep-seated anxieties around self and body image and her social difficulties (which has resulted in her always lying to counsellors and telling them what she thinks they want to hear, because she is afraid they will judge her for her true feelings) and until these are properly dealt with I think she will continue to relapse into her ED, which is the only thing that seems to give her any sense of achievement.

Anyway, sorry for the essay... I am working hard on staying calm and just stating the facts as they are to her, and sometimes she seems to accept what I'm saying, only to turn around half an hour later and outright reject it. At the moment the plan is a re-weigh on Saturday and she seems to agree to seeking a referral if more weight has been lost. I say 'seems to' because she changes her mind every hour on the hour.

She sounds similar to my dd, I think I'd just implement FBT again if it worked before. I'd say you aren't making sensible choices at the moment so I need to make those decisions for you as you are going to make yourself seriously ill.

With my dd the (undiagnosed) autism makes implementing a structure/routine with set rules in place a bit easier (although harder to get her back to independence.)

After the initial kickback dd was okay with me taking control and I pointed out to her recently that it wouldn't matter what age she was I would never let her restrict like she did originally.

An update from us. CAMHS appt went well in the sense that I finally felt someone was listening and taking us seriously. Her WFH has dropped to 76% from 85% at our last appt 3 weeks ago. They got the measure of the extent of her restriction and also the compulsive exercise (shes running and leaping 8-10 hours per day). They are putting in home support in over the weekend and a referral to the in-patient unit. Blood test results should be back tomorrow. ECG booked. I'm so relieved that someone other than us has recognised how serious this is.