Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@JoyousCyanCat the book was really helpful for me in explaining about the illness and also the different styles of reacting to situations. They use animal metaphors example rhino dolphin, jellyfish et cetera and I recognised myself in most of them. So that after reading the book and gaining some insight into my own reactions, I was able to stay calmer in very distressful situations, which helped. It also helped me to understand the different stages of the illness and why progress can be so slow and how I could be a number of steps ahead in recovery from where my daughter was. I would definitely recommend reading it. I thought it would be a useful book to read for anyone with teenagers.

@Glitterfarti good to see an old name but sad to see you are stuck, like us. Things are a lot better now than they were for us a year ago but she’s still not weight restored and still has not got her periods back so the worry is still there. On the whole she has made great progress but can’t seem to find the motivation to go that extra step to full recovery.

I have just read the report on the BBC website about the mistreatment and abuse of young patients in an inpatient ward in Scotland. It is heartbreaking to read but a reminder to us all to be alert and advocate for our kids. My child was never abused but she was dismissed and discharged on a regular basis which I never found acceptable given the nature of her illness.

Thanks for asking after me / us @Shanghai101. I’ve just walked away from the thread for a while. It’s a difficult time of year for me health wise and things haven’t been great with dd. She’s had a lot of stomach pain issues and missed a lot of meals because of it. She has quite a strong reaction to the pain physiologically, due to her seizures (vagus nerve activity), loses energy with stomach pains and has to sleep, feels sick and can’t eat. I’ve made her pause dancing again because I don’t want her shredding calories.

I have allowed her to join the gym. But under instruction of a PT, no cardio, just strengthening exercises. I’m trying to talk to her about nutrition as her diet is so carb based with very little protein and decent nutrients. She thinks nothing of eating chips every day but olive oil is bad for you and I asked her to put anything she wants in the Tesco basket to be confronted with 0.2% fat cottage cheese.

She has become a lot more rigid and nasty again, actively wants to upset me. And dh has gone full on pathetic. Dd is getting so exhausted atm due to lack of nutrition and seasonal stuff. I can’t depend on him to do anything to get her to eat. He agrees stuff with the ED coach and doesn’t follow through. He’s having massive PDA responses to anything and he is really starting to piss me off big time. He’s on board but only if it doesn’t involve him doing any work or having any of the difficult conversations with her. We argued on Sunday and I called him Disney dad. Then on Monday he proved my point again. I asked him to wake dd for evening snack. She went to bed without dinner (and the majority of her nutrition is in the evening) and I knew there was no chance she’d eat as she’d told me she wouldn’t. But did say she’d have snack, which would have been quite substantial and would have been an opportunity to encourage some protein. But no, as I was blissfully unaware in bed myself, he didn’t want to wake her up FFS.

The ED coach has been great and is also very frustrated with dh. She’s trying her best to get him to focus.

I’m sorry to read what is going on in your family @WoodenTrain. And sorry to see some new people joining. I have written a fair amount about Jenny Langley and the Charlie Waller trust on this thread if you do a see all for information and contact details. Jenny is great. She is doing a monthly zoom carer’s meeting next Monday from 7. Very worthwhile joining. Eva Musby also was a flop for dd, made everything worse. Jenny co-authored wrote the larger manual version ‘Skills based caring for loved ones with an eating disorder’

@Mummyoflittledragon Sorry to hear things are so difficult with DH too. We have been through some hard patches too. I do now all the meal support. DD won't eat in school so all snacks and meals are eaten under my watch. Been for a long time. It's utterly exhausting but it's the only way to ensure she eats all the meals.

Are you sure gym is a good idea if she is undereating? Even strengthening take a lot of energy. Could you use eating as a carrot? Either she eats (xyz extra to make up the calories burned in the gym) or no sport.

we are still plodding along. eating still not great. DD is refusing weight ins so no idea what the weight is. She is now completely refusing to talk to the ED team. Still in the PRU for school. In final stages of the EHCP but so far everyone specialist school we contacted us full. Her mainstream school also said they will not take her back as they cannot meet need. Education is so important for DD. really getting scared about what happens if no setting is found esp as she is starting GCSEs in September. it will be devastating for her (already poor) MH. At least things are somewhat stable now albeit at a low level.

@Shanghai101 saw that news. It was hard breaking to watch.

Sorry to hear Mummy, we had some family therapy which helped with getting DH on board with meal support. The tummy pain also sounds very familiar and was at its worst when she was losing and at her lowest weight. It has eased considerably in recently months. We saw a couple of specialists but they didn’t find any reason for it other than being underweight. I think once the protective fat is lost from around organs it can cause pain. The cure is to restore the fat - not easy I know.
Curly, I think our daughters are very alike. Education is very important to mine too. Sadly it is not enough motivation for her to give up the ED yet but I think it keeps her functioning. Hopefully, your DD will agree to therapy at some point because that has been key for my daughter to start to understand who she is and why she feels the way she does. Unfortunately, I think our kids are the ‘too complex’ cases.
Mummy, how do you See All posts? Do you have to be a member? I can only See All for OP.

Mummy I would definitely knock the gym on the head, your dd sounds in no way well enough for it and I think you're hoping (like we all do) that she will be rational enough to make a sensible decision around food and exercise.

I'm sorry your dh is being so useless, it's a common theme on this thread unfortunately that one of the partners (generally the dad) checks out or takes the easy route. I have a very low threshold for useless men hence being single for the majority of my life 😂. In some ways being single parent is easier as I make the rules and can only be annoyed at myself if I break them!

My dd has just turned 19 😳 can't really believe it tbh and that also means we are five years in since the ED started just after her 14th bday.

We live in a precarious world where dd eats okay on the surface but I know she still really struggles with intrusive thoughts and poor body image. That said she's doing well, we went for a day out Ystd and she bought herself a doughnut when we arrived as she was hungry (I had to do a little inward cheer whilst outwardly staying poker faced!) so small victories in the right direction.

Thanks for your responses. It so nice to get your well wishes. I am following the thread and rooting for everyone too.

@Curlyhairedassasin
I am sorry to hear you're finding it so tough to find a space and hope you will soon for your dd. My dd is finally considering talking to the ED coach. They’re just building a relationship right now and it is fragile. These things in my experience take a lot of time and you need a very patient person willing to first of all create a therapeutic relationship first rather than trying to push things through. The coach is of the opinion that any listening or talking isn’t wasted even if it’s not actually work, it’s the start of building trust in a therapist. I do hope your dd engages again.

@Shanghai101
That’s really useful information about the pains and I’m sorry for your dd for having had to go through that too. I agree. They are complex cases, which is why dd a psychiatrist, puffed up by her own importance allowed dd to pull the wool over her eyes...
You do a see all by clicking on the top 3 dots of a post and scrolling down to “see all by postername”.

@Girliefriendlikespuppies
Happy birthday to your dd. Five years. Wow. She’s doing well by the sound of it even if there’s a way to go. Well done on the poker face. I need to polish mine up. It’s hard. And it sounds as if you’ve had a lot of practice.

You all are expressing doubts about the gym and I understand why. She has had to pause dancing because this is a regular thing, regular days. Luckily she was actually getting a bit bored anyway. But ultimately she had to stop as I couldn’t have her shredding calories again.

She's a sporty girl. The gym is indeed being used as a carrot. She knows from now on she has to have eaten full meals the day and day before training and eat an extra protein snack on the day. This is proving hard with the tummy issues. The most she has gone is twice a week. The idea of the gym is also to mix with people, teens, who talk to her in passing about the need to eat good food, especially protein. Her diet is very processed carb based.

She has only just started maybe 2.5 weeks ago, had 2 PT sessions and 2 sessions by herself. She isn’t doing much. The PT knows a lot about ED so it’s building up slowly. I’ve been checking on different fronts that dd isn’t doing big workouts. Idk when she will next go. She has a PT session on Thursday. Possibly not until then. It also has a pool so even if she can’t exercise, she and her friend can sit in the whirlpool for a while. The heat may be nice as she’s gone back to being cold atm. Dd isn’t big on swimming so it would be a bit more of a social thing.

Hi everyone,

I've not been here for a while, maybe even nearly a year, so I'm not sure if anyone remembers me. I needed to dip out to fully concentrate on dd. At that time she had Anorexia for about 3 years. She was doing pretty well but was suddenly dumped by her 'friends'. I think it was the mum of one of them who orchestrated it which was an unbelievably cruel thing to do. She relapsed overnight.

I gave up work again to become her best friend/carer/night watchman. We went right back to the beginning with meal plans and strict routine. We spent ours days watching TV and going for drives. It was easier that time around and we both just fell into the routine. It took just a few weeks to turn her around again. We had no medical intervention at all as she just refuses.

I'm pleased to report Dd is now recovering well. She's now 19 and she's driving and working. She loves having some independence. She eats well enough knowing that I will notify the DVLA if I feel she's unsafe. We started food shopping together again and occasionally she'll prepare her own food although I still do the bulk of it. It's scary for me and I'm definitely feeling some PTSD but we need to progress if she's ever to be independent from me. I have no idea of how much she weighs and neither does she but she looks like a healthy slim person now. I can see her skin looks good and her hair is getting long and thick again. Working is giving her purpose and there are some tentative friendships forming although she's very guarded around letting anyone get too close.

So that's my update. We are definitely not out of the tunnel yet but I see the light. I'm realistic and know we will probably never will be fully free of this cruel illness. However I feel confident I have the tools to pull her back again when I see the signs coming or if something happens to cause a relapse.

Sending so much love to you all. This amazing group of people gave me skills and confidence to help my dd. There IS light at the end of the tunnel 💕

I remember you @BagpussSaggyOldClothCat - or your username to be precise 😊
Thank you for taking the time to update and well done to you and your DD. It is reassuring to hear stories like yours 💕

Thank you for updating us @BagpussSaggyOldClothCat. I wasn’t around when you were last on these threads. However, it’s really warming to read stories of hope. I hope your dd continues out of this to full recovery.

And just an update from me. With dd (16) restricting due to all the stomach pain issues, she has been really slipping backwards. The ED coach told dh he needed to get this under control, to step up basically. So he went home last Thursday and told dd she had 3 days to agree to eating 3 meals 3 snacks and eating more in the day, more variety of foods otherwise she’d have a very boring half term. And that dd was staying at home for the 3 days or until this was sorted. His delivery method was um shit. But I backed it up. Lots of calming, smoothing over texts from me etc.

Roll on Friday and we thought she’d accepted it especially as she’d talked to school about it. Luckily I pre-empted a possible issues and asked dh to leave work early. At maybe 6.30pm she came down and asked who was taking her to her friend’s house. We said no one. She then tried to leave the house. Dh blocked her. It was 3 degrees, dark and she’s back to being freezing cold and on the previous day had threatened to disappear if we didn’t let her go.

She then ran upstairs and was half way out the window by the time we followed. Dh pulled her back and then they were on the stairs, her trying to push past him. So he took her in the bedroom and she apparently started kicking and scratching him so he held her wrists and legs. I locked the upstairs windows to sheer drops then went and into the bedroom and locked those windows. I then asked dh to release her while I did the rest of the windows in the house at the front leaving access to go in the garden.

When I got back she was on the phone to the police. Apparently he’d let go but he continued to attack her. She said she was going to call the police so he let go to allow her to do this as he knew she’d need to be calm. They were satisfied dd wasn’t in danger. Then they called dd on Sunday. I spoke to them and said dd had scratched and kicked dh, which hadn’t previously been disclosed. The officer seemed satisfied that we’d restrained her for her own protection.

Then I had a call Monday to say it was recalled and written up as assault on her and from her. Cue me panicking. The officer assigned to the case then came yesterday and spoke to dd and me, both alone and together. He said the assault would be removed and it treated as parents protecting a vulnerable minor. He also spoke to dd and gave her a bit of a talk about listening to us as parents.

There’s a whole bunch of other stuff going on as well that I’m a bit nervous to write in case someone involved sees it as it may put us in danger and my nerves are totally fried.

Anyway, the upshot of the above is that dd negotiated with me, agreed to eat 3 plus 3, agreed to one more fruit, a few more vegetables, to eat pizza at home and one more protein source. And the best thing is to increase her morning snack by adding in a big slice of cheese. She’s nowhere near close to returning to eating meat. But it has been a big step in the right together and shows how powerful dh and I can be if we work together. She now has to take things very seriously if we sing from the same hymn sheet.

She got to go to her friend’s house btw on friday night and has been having a great half term. All of a sudden she has more energy again. She’s still cold of course. She had friends over for 2 sleepovers and even managed to meet a boy for an hour and half with them. She hasn’t been out apart from that and a couple of short walks. I’m wanting her to have a more relaxed day today as she has a session with the PT tomorrow, which I think she will be ready for. And I’m going to ask the PT to talk to her about gaining strength and power, which will possibly lead to a bit of a chat about nutrition… and I think she’s finally forgiven dh for restraining her.

oh wow @Mummyoflittledragon Sounds like a few days. We had a year ago the whole police involvement too, the SS got reigned in. Was awful.

DD is having a bit of a dip again. Had the mother of all tantrums a few days ago when I insisted she added something to her 200 cal dinner. She ended up wacking her phone onto my head and gave me a cut which bled quite a bit. Nothing dramatic but it's just the sheer level of anger towards me. DH then also threatened to call the coppers - on me. Apparently I am traumatising and terrorising DD (because I insist she eats). he didn't in the end as DD was pleading with him not to.

We have a ED appointment today and DD is refusing to come. we haven't had a weight check in a while now as she is not agreeing to weight ins. she is slowly but surely reducing food intake. 10 cals here, 20 cals there but it adds up. we also struggle with the EHCP. It came through now but all suitable specialist schools are full and the placement in the PRU is running out in late Spring. I think this is causing a lot of anxiety too at her end. It's just all neverending it seems.

If your DC weren't in school/full time education in KS4, how did they get their GCSEs? That's the only thing she really wants (so she can do her A-Levels). We probably need a plan B.

@Curlyhairedassasin
It sounds as if you’ve also been through it these past few days. I’m so sorry. And for your poor dd for having to plead like this. It must be so confusing. And infuriating for you. It is so hard when you are faced with a dh, who would rather appease the ED than fight for your child. I hope you can both come to more of an understanding.

What happened with CAMHS? I know we only went 3 times before they signed dd off 🙄. But I insisted dh came each time with us, that being the best way we could get her to go.

I really wish you luck with finding a school for your dd. I don’t have any advice. Have you discussed with the LA what happens if there isn’t anywhere suitable locally?

@Curlyhairedassasin

on the subject of school, if special schools are full and there is a EHCP, are on-line schools possible? Some schools/LA will fund these as alternatives to school depending on the EHCP. I haven't used them for my child but know people who have successfully as they are used to accommodating pupils with serious health needs.
It also depends on what part of the UK you’re in (if EHCP, I assume England)

I know my LA funds that at times but we do not want this. She really wants (and needs) to be in school. She is desperate to be in a classroom doing normal school work. I work all week so she would be at home alone all the time. this would be really detrimental to her MH and learning. My other child has complex learning needs too so I wouldn't be able to support DD's learning much in the afternoon/after work either as I am spread really thin with working and caring for two very complex teens :(

Curly, I thought I read somewhere that if there is no specialist school available then you can name a suitable private school that takes SEN students. This might be best for your DD as she sounds very academic. And the smaller size of the school would help with anxiety etc. She should have smaller classes and more support too. My understanding is that it is all about building them up again, )confidence, self-esteem) so this might be worth exploring

@Shanghai101 the specialist indy places we consulted are full and the mainstream indy schools say they cannot meet need. We are just hitting a lot of brick walls atm. I am so frustrated and upset. Just waiting to hear back from the LA about next steps. there are still 2 more weeks to finalise the EHCP before the legal deadline is up (but I doubt it will happen) but getting a response from the LA is like getting blood out of a stone. They suggested at some point we send her back to her old mainstream school which drove her over the edge.

Hope everyone is doing ok. DAN14 is eating a wider variety of food but I’m now concerned about her obsession with building stronger muscles and exercise. She’s been medically cleared to exercise and when having a review session was discussing going 4 times a week. Gym next to school so challenging to control. Was meant to be twice a week that was negotiated to 3 times a week which she was told was her max.

@Cantfindthewordsddstruggling

does she eat to compensate for the exercise? I guess not. Our psychiatrist mentioned once RED (relative energy deficiency) syndrome or something like that@. Sometimes, the eating is better but then they exercise more than the calorie intake allows for. Just another way of losing weight. Can you collect from school to reign things in? 4 times a week sounds excessive esp for someone recovering from an ED. I'd try to nip it on the bud!

@Curlyhairedassasin she is getting weighed monthly by one of her medical team and maintaining. I can see visible changes in muscle mass. She is only allowed to exercise if she has an extra snack on a gym day. Yes, I’ll be collecting her so I can have a bit more control over things but it just seems the moment we get a reprieve in one area another turns to 💩

Curly I really don't understand why you're still with your husband? It makes no sense, he actively goes out of his way to undermine you and therefore keeps your dd ill. You would be much better off dealing with this as a single parent which effectively you already are.

You should speak to Women's Aid as he is 100% emotionally abusive.

Can't** I would be knocking that on the head as well. Can you speak to the gym? Ideally they can monitor what she's doing and also refuse to let her in more than twice a week.

That said if it was my dd it would be an outright no chance. Dd is very triggered by people exercising though.

negotiating exercise is hard. I’ve known it be beneficial for some in building a better relationship with their body and improving mood. Others are replacing one compulsion with another. (Own daughter is a way off being able to exercise at a gym).

Perhaps she needs to get back to the agreed three times a week and, if she cant stick to that, the gym is a problem and needs to stop? I think it’d become clear quickly as people find don’t use many calories exercising and so, if that’s the motivation, they scale it up fast.

I’d feel terrible though saying don’t go to the gym because exercise keeps me sane at the moment!

@Girliefriendlikespuppies I’m ok with the three times a week as she has a clear program that’s tailored for her and her set of circumstances. The whole program takes less than 40 mins and is focused on strength and conditioning(she’s not killing herself on cardio equipment). It’s only an issue if the 3 days isn’t “enough” for her to keep unhealthy behaviours and patterns at bay.