Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

She's 16 @Glitterfarti I was surprised because her friend has vaped for a while and she's always been a bit scathing about it. I was expecting to find razors/hidden food/laxatives, not a vape.

Your situation sounds so frustrating. This illness isn't a short term thing and it's relapsing so there's only so long you can put your life on hold.

@Glitterfarti does she eat at school? Can you take some extended leave over the school holidays?

It is such a frustrating illness, I can remember thinking I’d have to leave my job, potentially lose the house etc if dd didn’t get better.

The fact that your dd eats okay with your supervision I think id try and work out a way of making that work. I took two extended sick leaves when dd was ill, once at the beginning and again when she relapsed about 6 months later.

Could you do stuff like FaceTime her from work for snacks and lunch? When I went back to work I plated up all DDs snacks and lunch and then FaceTimed her. School loosely supervised her when she was at school.

If you could get her up to 90% plus wfh I think you’d hopefully notice an improvement in her so she may not need as much supervision (I appreciate that may not be the case but ime the higher DDs wfh was the better she ate overall.)

Just spoke to the nurse on the ed team. She had discussed with the MDT team about our wish to do obs and weigh ins at home. It's an absolute no. They see it as them being responsible for her whilst she's under their service and they can't take responsibility while being unable to see her. We have to get her there this week. They then want to do a review with us as a family, the family therapist and the Dr.

They're being so heavy handed. They tried to force me to give the name of the therapist we found too. I just told them she's not going any more.

The nurse also said that her previous nurse had wanted her to go inpatient for refeeding.

I think they want nothing other than total capitulation. I can't see this ending any other way than her in a hospital or unit with an Ng tube.

I've decided I'm going to ask DD if she'll let me blind weigh her at home. That way, if as I hope, she's remained the same weight (or restored), I can insist they don't weigh her this week. I think that's our only chance of stopping this one way journey we're being forced on

Sounds like people are getting shit advice all round, I am sorry. I don't know if it's worth contacting the consultant direct, @Weightlossworried , if the insistence on hospital attendance is driving the disorder could you invoke Martha's rule?

@Glitterfarti 3-6 months sounds frankly delusional, if that's true it can only surely ne because they are including a mass of people with an ED with a normal weight who are shuffled off to 6 sessions of cbt for BED or ARFID. Noone with a BMI of 14 is better in 3 months!

@Weightlossworried a review with everyone might not be a bad idea, I’d go prepared though.

Give examples of why you feel blind weighing and less direct involvement with the ED team is the way to go ie your dd has been more relaxed and overall eaten more.

It would be useful if you could blind weigh your dd as that will also give you more evidence that your approach is working.

@Weightlossworried thanks for updating us. Silly question but how are you feeling? It’s a really tricky situation to be in. You are in control, but it sounds like they are really worried about your daughter. It will be good to meet with the team and hear what their concerns are. Especially the doctor. I found that when the doctor told me their concerns, it started to resonate with me.

As others have said, go prepared. Also know that refeeding does not mean a feeding tube. It can mean some time on a children’s ward where they can make sure she’s medically ok to increase her calories.

This isn’t a reflection of you or all the hard work you’ve done. I wouldn’t expect the worst. I would just hope that they now have a clear plan that will help your daughter and help you.
We are here for you. It would need more than a nurses recommendation for her to be admitted. A GP would definitely need to be involved and then the team at the hospital have to accept if they deem appropriate. We aren’t there and may never be. Let’s see what happens at the meeting xx

Thanks both. I've calmed down. I think it was the stuff around the therapist that really made me angry. The implication was that arranging therapy that they weren't directly involved with was inherently a safeguarding issue. That really got my back up.

She won't agree to us blind weighing her. I guess the proof is in the weighing on Thursday and we take it from there. If she's actually restored weight with a hands off approach over the last couple of weeks we have some good evidence to push for a lighter touch. If she's lost weight then we accept defeat.

I really don't feel in control at all. I feel like they see us as responsible for getting her to adhere to the meal plan but that's it. We're not listened to when we tell her that she needs to be blind weighed and they don't trust us to arrange appropriate private therapy.

I also don't believe they'll listen to us when we tell them about the progress we've seen. They want to see her eating 3 snacks and 3 meals and consistently gaining 500kg-1kg a week. Anything less than that counts for nothing.

I work for the NHS (nurse) and I think the private therapy thing might be due to the lack of regulation around some private therapists, within the NHS for all its many faults there is generally tight regulation. I imagine they are just concerned the therapist could be anyone who ultimately could do more harm than good. Thats why they want to know the name so they can see if it rings any alarm bells.

They have probably had other patients who ran into issues with private therapists.

The blind weighing thing is absolutely ridiculous though, I’d like to see their evidence that telling someone with an acute fear of gaining weight their weight is in anyway helpful 🙄🙄🙄

To me that’s the biggest safeguarding issue, what safeguards will they offer if your dd regresses or harms herself after they tell her her weight?!

The other issue you could raise is medication, I can’t remember if they’ve suggested this or not? For some teens it’s really helpful and takes the edge off the anxiety.

When is the meeting @Weightlossworried @Girliefriendlikespuppies is right about the private therapist. They also find them a threat as they often have more success than them! It’s a bit like a private tutor for 11 plus or GCSE’s. The tutors are often angry with the system etc and have removed themselves. Private tutors are often ex ED teams etc.

I often wonder how the think the 3 meals 3 snacks thing will just magically happen. How often do you think it actually does. I’ve said before but I remember saying to them, I know she’s supposed to eat - she won’t. I’m not stopping her!!!

Keep talking. It made me feel less mad when I was in your position. Xx

I do get that about private therapists. I wouldn't have taken offence at all if they talked to us about regulation around therapists and warned us to be careful etc. Although as it happens we're using a therapist who used to work for the NHS and now works in schools. I also wouldn't have minded if they'd seen some concerns since she started therapy but they haven't. I would far prefer a CAMHs therapist, if nothing else it would be cheaper! She won't engage with CAMHs at all though. The conversation just felt a bit gaslighty you know? A bit, 'let's throw the word safeguarding in to scare her'.

We already have regression and self harm after a weight restoration. We've told them that. They've offered no safeguarding other than to tell us to hide sharp things and medication. They show her the weight and send us on our way to deal with the fall out...

I did ask about medication and when it would be used but they didn't seem to think she met the threshold for it then.

We'll just have to take it one appointment at a time.

We have our normal appointment on Thursday @Pearl97

They'll let us know about the review. I feel panicked just thinking about it. The head of the ed team is a psychiatrist who dd has only seen once. I couldn't make that appointment so DH took her and it was awful. He ended up in tears the evening after. I've never seen him like that in almost 30 years of marriage.

I hate that they don’t tell you when things are. I remember them being like that and it felt like torture!

The psychiatrist made me feel that way too. I do wonder if I was so emotional as he made me realise how serious things were. It’s so hard as looking back I now wonder if I should have asked for more appointments etc earlier, but the feel in of dread and my lack of desire to go prevented me! Xx

Hey everyone. Just here to vent again after another meeting with zero progress. It’s now been 8 months since I first took DD to the gp. She’s been eating 3 / 3 since that time with no progress. She has upped her meal plan for the past 2 weeks to massive amounts but the dietician said she’s barely meeting the calorie goal and now it must increase to 3000. DD is very distressed this evening and refused to eat downstairs. I then saw some bits of tomato down the toilet and I’m freaking out that she flushed the whole dinner away 😓 I’m certain she’s never thrown away food before now. she won’t speak to me after telling me once again to fuck off and die because I insisted on serving her plate (she absolutely hates this) but it’s what was agreed today. She hasn’t spoken to any of us tonight and has been shutting down. It’s so heartbreaking and I’m very tearful myself. We are just so so stuck. I know the fact she’s eating and at home sounds great compared to many others but to me this journey is just relentless and we feel like we’re getting nowhere.

@Raspberrysins that sounds unbelievably tough. You and your DD have been so strong sticking to the meal plan all that time, it must be heartbreaking not to see results.

It's awful when they take all their pain out on us, and the shutting down is just as bad.

Are they offering her any other support?

@Weightlossworried thank you x they have referred her to an occupational therapist..? Not really sure what that will achieve. Apparently to talk through ideas for how she can occupy her self / her mind. That’s her main struggle right now as it’s the summer holidays and she finds being at home distressing. She told me the tomato in the toilet was probably from picking it out of her braces but now I’m not 100% on that as she said ‘probably’… surely you’d know either yes or no. I’m trying to distract her but we go away on Sunday and sometimes a few days at home is just that — no problem.. but now she said every minute is a waking battle and she’s sick of it. Sick of counting down the minutes before bed time.

Well I hope the referral isn't long because it sounds like you really need help with the emotional side of it all.

I think your instincts on the food in the toilet are probably right. I imagine she feels pretty desperate right now.

Fingers crossed the time away will help

@Raspberrysins do you usually see you dd eating? The easiest way to get more calories in without increasing the amount is to make everything as calorie dense as possible.

Id also be enforcing a no toilet rule for at least an hour after she’s eaten, she’s 100% flushing food away.

My dd needed 3000 calories plus a day to gain weight and I’d estimate she eats nearly 3000 calories now a day just to maintain (she’s 5ft 8in and athletic build. )

Mine put stuff down the sink when the plan increased. They were ok at a lower level but once it increased then almost everything was binned one way or another. I think the whole thing makes them deeply ashamed. Sending support <3

@Raspberrysins this is such a nightmare for you all. I wish I had some answers. It has been a long time for you all and you really would hope for changes etc by now.

Remind me, did your daughter lose a lot of weight and is she still really low weight? I’m wondering what help you can ask for? Definitely watch any toilet trips after eating, they are unbelievably sneaky with not eating the portions they should. I know how hard this is. We are here for you.

Thanks everyone for your supportive words. Today has been better. We have all eaten together and she’s eaten agreed amounts. She promises she is ‘locked in’ now. (Again!) We had a call about her blood results as they are now concerned about her liver function. It basically starts to eat itself. I think this has scared her today. She’s also been getting low tummy ache which I suspect is lactose intolerance. We are using lactose free milk but she also eats normal yoghurt quite a lot. In January when we went to the GP she was 47kg. We were told to go back in 6 weeks and it went down. Then waited for eventual camhs referral and it went down to 43kg at one point. She is now hovering around 44-45kg. So is 73% wfh. She is tall. No periods since October. She eats 3 meals and snacks religiously. She is extremely rigid. They also said from the blood results she has been exercising too much but this is mostly standing up. She isn’t doing any other exercise. I am with her all day and know she’s not purging or throwing food away. This awful illness takes so much from them! I do think she has had enough now.

Sorry to everyone who is struggling and fed up of this illness. I'm finding it difficult at the moment. Everyone is on holiday or day trips and I'm finding it hard that we are not the normal happy family we once were not that long ago.

What Id love to unlock is how to change their mind once they have decided they want to be thin. We may have some limited success in forcing/persuading to eat a set meal plan for so long, but there is still absolutely no desire to get better. If anyone uses the term 'recover' she hates it.

We have been in and out of hospital since the end of May now on a combination of NG tube, food and meal replacement, plus medication, but still there is no changing her mind that what she is doing is what she wants to do. End of story.

I just fail to believe that this will change once she has been "re fed".

Really hard to see the light at the end of the tunnel.

I see it as an addiction and an addict has to want to change.

@CuppaTandBicky it is an addiction but because it’s also brain based (a starved brain is not a rational brain and with anorexia the brain can lose significant amounts of mass) the switch to recover can and does happen just with food and weight gain.

There have been a lot of success stories on this thread that are testament to that.

It is a mountain to climb though and when your in the trenches with this illness it feels impossible. Every single mouthful you get them to eat is a win.

@Raspberrysins are you deciding on what the eats and drinks? She’s still such a low wfh and the bloods are a concern. Have they got a plan to increase the calories?

Thanks I do get this and I know it's just because we are in the acute stage.
It's really hard to appreciate the starved brain = a rigid brain thing when your child is neurodiverse and their brain is like that anyway though. It's almost as if losing weight is just one in a long line of rigid fixations on things.