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

[Curlyhairedassasin]

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

We never made it to hospital. After the fainting episode all her tests were fine. Even her blood pressure. Carried out by a paramedic. This was followed by our CAMHS case worker telling us, then my daughter that they don't admit anorexics to hospital unless it's an emergency. I thought that would be a massive spiral for her but actually she just turned around and said well I need to start eating sometime. A little bit of food and a lot of sense later now. I know it won't be forever but one day at a time. I wish I understood this horrible disease.

@PermanentlyExhaustedPigeon80 @littlemissy12345

Not sure what to say. I do think the 'treatment' or lack of your DDs getting us appalling. Are you seeing just CAMHS or so you have a dedicated ED team involved. Not sure what to suggest but I wouldn't be happy. I would consider presenting at a different hospital nearby or complain to PALS to get things moving. DD had two longer admissions. The second time round the bloods and ECG weren't even abnormal yet. It's an absolute lie that patients with AN can only be admitted once things are critical. DD was admitted as she was only eating very little and she would have become critically ill - the whole point of the admission was to prevent that (she was then fitted with an NG tube as she wasn't eating enough to establish re-feeding - so she got top ups via NG to get nutrition in). first time round it took almost a month as an inpatient for her to manage the full meal plan. When they are so ill, and the AN is so entrenched, they cannot turn it around at home. The brain is also so starved - cognitive processes are really affected. It was impossible to reason with DD at that point. Please don't accept the poor treatment you receive. Your DDs deserve better but unfortunately, it often takes a lot of advocacy by the parents to get things moving.

It seems that there is no intensive treatment available in some areas unless you are medically unstable. Which is crazy really when you consider that early intervention is recommended for a good outcome. We watched our daughter slowly deteriorate over the course of a couple of years and then drastically go downhill in a matter of weeks/months once the ED really took off.

If I could have my time again, I would engage a private ED psychiatrist as early as possible, even if just to tell me what our options were and advise on what to do.
I would also sign up to Jenny Langley’s workshop via the Charlie Waller trust (these are free but you can make a donation to the trust to ensure their continuation). She will teach you all the skills you need to care for somebody with an eating disorder (used by specialist ED units). It’s not a replacement for treatment but it certainly gives you the skills to help your loved one and not reinforce or unnecessarily accommodate the eating disorder. In the absence of professional intervention, it is the best you can do. Apart from teaching you skills, it is also a source of support in what can be a very isolating time.

Thanks @Curlyhairedassasin and @Shanghai101 - we are now under the CAMHS specialist ED team, and when we get to see them individually they're usually good, but the organisation and communication is pretty poor. We were supposed to have a Dietician appointment this morning, to help us personalise DD's meal plan and work out strategies to get through the next week. It was cancelled less than an hour beforehand due to staff illness, and rearranged for next Friday. This seems a very long way away given how fast things keep changing. DD really struggles with last minute change, so she's now super anxious, and the plan to get her into school this afternoon is out of the window. I'm so fed up with a service that's meant to be designed to help young people with their mental health actively damaging it by being so inconsistent and confusing. Not to mention the Consultant making a stupid comment yesterday about D&V which triggered DD's massive germ phobia, and them telling us we'd been on the wrong meal plan for a week due to a 'mix up'. Really not good enough. I guess this is why people go private?

As we've got no support until next Thursday now, we're going to go with 'eat what you can' rather than insisting she follows the meal plan. I think anything else is likely to trigger full refusal again, and I want to keep her out of hospital long enough to get started on the therapeutic work with her ED Case Worker. I know this is going to mean she eats far less than she should, and will have lost weight, but at least she's eating something, and for now that feels like a win.

Has anyone else tried a similar approach with an anxious ND (and probably PDA) child? Did it work, or are we just pushing the problem further down the road and allowing the ED to get what it wants? Argh, so many conflicting feelings about how to go about this! Just about to start reading The New Maudsley Method skills-based caring book, which I'm hoping will give me some answers.

@PermanentlyExhaustedPigeon80 I am sorry to hear that your dd got cancelled on. The ED coach thinks my dd likely has autism and PDA. Not diagnosed. This is why we are using New Maudsley and the ED coach that I sent you a PM about.

If you’re allowing your dd to do what she wants (eg going out or to school) without eating, yes, you are giving into the ED. I get that it is tough and scary to stand up to it. And I was very much at its mercy at the start. To save me rewriting the sort of technique I’ve just reposted what I wrote about how I would approach trying to get my dd to eat.

I see your dd is eating. So if she wants to do something, it’s stuff like, “sweetheart, I know you really want to go to school / meet your friends. It would be irresponsible for me to let you go unless you have had something to eat. If you just eat this (eg 2 croissants ie something with carb and fat) then I will drop you off.”

As for going to school, at the start, the rule was dd ate something at lunchtime or I picked her up. She ate one of 2 sandwiches without the crust and wasn’t having breakfast. But it was something and fulfilled the criteria at the very beginning as she was not ready for a meal plan at all.

We have got much tougher with our dd at times than the above. We have had to to prevent her going seriously backwards.

@PermanentlyExhaustedPigeon80

I know this is going to mean she eats far less than she should, and will have lost weight, but at least she's eating something, and for now that feels like a win.

it's not a win. She is already underweight and starving herself further. She needs to gain weight. Anything else is a win for the ED!

DD is ND and very controlling. FTB never really worked for us and she only ate in the end what she could eat. It caused a long and steady reduction in her weight until she one day decided to stop eating and we were finally admitted. After 6 weeks in hospital (including 4 weeks on NG tube) we got home and things are currently better. In essence, you are deciding to let her take control of her eating which, given what you have posted so far, sounds like a plan which will only make things worse.

How much is she eating and drinking at the moment?

Interesting hearing all of your experiences. We had an occupational team come to the house this morning so that's on top of the CAMHS ED specialist and the parenting group. They were just doing an assessment today and sending a plan for the next four weeks - at least 2/3 appointments a week. That sounds daunting to me but I've got a feeling we will be happy to accept all the help we can. DD is still on track and we are just overjoyed to see her eat and also eating reasonable portions. One day at a time though.

@PermanentlyExhaustedPigeon80i think you just need to tackle it head on, as sooner or later the meal plan needs to be followed so your dd is getting what she needs. It’s scary and I remember the screaming and crying followed by ‘I can’t’ but it still needs to happen, their distress is awful but anything to beat this and bring your child back is worth it. Not all young people can manage this at home and other settings are required but you show it that your stronger (you won’t feel it) and you try any which way that works. My son really loves sport and seeing friends that was our leverage and afterwards we tried many things to distract him but not much worked, sometimes tv or a game together other times we were pushed away and screamed at and things were thrown. You are slaying a beast

@PermanentlyExhaustedPigeon80 how are you?

For what it is worth, I think you should also get started on the meal plan before your appointment end of next week. Putting it off isn’t going to make it easier. If your daughter is PDA (which Jenny Langley calls pervasive drive for autonomy rather than pathological demand avoidance) then the advice is to use the PEACE pathway and offer choices. Try to agree the exchanges in advance. Your DD will most likely lash out at mealtimes but try to see this as the ED not her. Externalising the ED will help you remain calm, which is crucial. But if you lose it, don’t beat yourself up, you are in good company and you are only human too!
If one meal/snack goes badly, then you just start again at the next meal/snack and be mindful that it may take a long time to get through a meal but that is okay. Likewise, she may separate out the food on her plate. You could try serving meals on large plates to make the food look less.

You can’t force her to eat, but you can encourage her and use whatever leverage you have but ideally this should be something that is imminent . We thought our summer holiday would be motivation, but it was too far in the future. However, we did print out a picture of the beach and that was helpful. Try not to talk about food all the time agree the menu in advance and then stick to it. Distractions are helpful at meal times i.e. bananagrams or whatever she likes to play.
Watch Laura Hills TED talk on ‘eating disorders from the inside out’. It will really help you empathise with DD. Love bomb your DD, as her self esteem is through the floor.
Good luck pigeon, it’s not easy but it is worth it when you see your DD start to reemerge.

How is everyone else? @Shedqueen @TheaBrandt1 @wandawaves

Curly, it’s so encouraging to hear that your DD is doing so well. Mine is sticking to her meal plan but not yet ready to fully weight restore. Hopefully she will get fed up of pseudo recovery and engage with the dietitian again soon.

Thanks @Shanghai101 We are getting a bit more headwind at the moment. She was eating loads after discharge (way more than the meal plan). We had a few days with flying objects recently, and she openly admitted she struggles with body image but in the end she eats what she needs to eat. I hope she keeps that up long-term. I notice I get incredibly panicky whenever we have an 'episode' of some sort.

After a long stand off with the LA, her EHCP got sorted new and she will return to school later this month. So hopefully all moving into the right direction but with bumps in the road. But I wasn't expecting anything else.

That’s great to hear Curly. If anyone deserves a break she does. X

Thank you, We are doing ok. She’s been home for nearly two weeks & sticking to her meal plan. This is the longest period at home without restricting for 18 months so great. She’s been to a couple of social events with her school friends as they are just finishing before exams and is talking about how she could start a levels in September. That would be amazing but there’s a lot of hurdles to get over first. Not least, getting her well enough to manage a day at college.

it’s been so busy , I’ve not kept up with this chat. I’m sorry to hear about so much difficulties. I’m feeling better since I gave up listening to ED services and trusted my gut. @PermanentlyExhaustedPigeon80 I’d echo the advice to get started with the meal plan, if only because who knows if the appointment will happen. I’m so used to cancellations/ no shows that I think if they turn up it’s a bonus.

Agree just do the feeding the appointments will follow. Since the worst of it April 11 /12 when she was eating one small meal a day and the psychiatrist told her next stop was admittance she has been sufficiently freaked out by that to comply with magic plate. She has gained weight. In midst of GCSEs working really hard and we are supervising each meal and snack. Need to keep it calm until after exams then will seek therapy as psychiatrist recommended as it still feels fragile.

Thanks for the advice all - it's hard to hear, but I'm sure you're right. She's still eating something at every meal today, but cutting corners wherever possible - now refusing all snacks, avoiding all oils / fats, and watching us like a hawk when we prepare dinner. Last night we had a massive stand off over me wanting to use olive oil to cook the onions - she ended up agreeing to 3 sprays (about half a teaspoon for the whole meal), which was not enough, and it felt really wrong to give her that much control. But... she ate the meal, which she wouldn't have done otherwise. I'm just so wary of triggering another hunger strike, and the advice from the ED Consultant was to 'minimise distress' until our next appointment, so I can't see how we can do that and insist she follows the meal plan. If we end up back in hospital that then delays the therapeutic input even further, and the whole thing starts again. It feels very chicken and egg.

@PermanentlyExhaustedPigeon80 yeah the advice is a take no bullshit approach to eating.... but.... I feel the same as you. I don't think the excessively strict approach would work for DD. She would just push back harder, and she's 19yo, she'd just leave the house!
But then I'm not confident the softer approach will work either.
I know I'm probably being terribly naive.

DD saw her psychiatrist on Friday, he's very worried and said he wants her in the eating disorder clinic, but it's voluntary. He said that she has 3 weeks before their next appointment and that if there are ANY changes for the negative, she will be going to hospital. I don't know if that means he would schedule her? Possibly, otherwise she's not going to go.

So we've had discussions. She said she is willing to "try harder" to eat. I told her it's not good enough as she's "tried harder" in the past and it never works for longer than half a day. I told her about the typical Maudsley no nonsense style refeeding process, which she flat out said no. We have always worked as a team re her mental health and so she doesn't want to fight me now, and I feel the same. So we have agreed to a compromise. I've taken the week off work (I may take longer) and we have agreed to 3 meals and 3 snacks a day, but the compromise will be if she doesn't want a meal, she has to at least just have a snack. I'm not excessively confident but it's worth a try before trying any firmer options.

Has anyone ever had any worries (or experience) with refeeding syndrome? I'm an RN so I can take vital signs and monitor for symptoms but obviously can't check bloods and electrolytes, which is my concern. I might get her in to the GP for bloods in a few days, if the refeeding is going well.

I feel like a dietitian could be helpful too, so I might see if I can find one tomorrow that doesn't have a long wait. She used to have a great dietitian but she was a paediatric one, so has aged out of that now.

I hope everyone is going ok. I'm glad to hear there has been some meals had.

@Shedqueen
That is so good to hear. It’s brilliant that you’re now able to think about the future and I am so so pleased for you and your dd. I really do hope that this is the start of something great for her.

@Curlyhairedassasin
That’s excellent news.

@wandawaves
My dd wouldn’t accept the no nonsense approach due to probably PDA. That’s why the Jenny Langley stuff works better with her. I have use stricter stuff to stop relapse and at times to force steps forward. But that’s with the ED coach directing me albeit now I know how to do it myself.

I don’t have experience of refeeding syndrome. Dd has had a lot of stomach pain issues and we had to be really careful to ensure stomach emptying as things were very slow. Even now, she gets pain if she eats too much in one go. She’s finally listening when I suggest that she stops to leave room for her next snack / meal. She now takes a lions mane to help her stomach.

As for dieticians New Maudsley has listed a few approved dietitians. Idk if Jenny Langley has a longer list. But this may be useful to you. https://newmaudsleycarers-kent.co.uk/expert-eating-disorder-dietitians/

@PermanentlyExhaustedPigeon80
Fats and oils are a common one. Once your dd has started eating more this is likely to persist for some time. For my dd I don’t make her aware of fat content if at all possible. She doesn’t read labels, thinks sour cream is protein but won’t touch milk. As for 3 meals, 3 snacks. If you can try to get your dd to eat snacks, that would be great. I would bite size it small so something really manageable and something your dd will eat systematically.

At first for dd every enforced snack was a pack of Belvita biscuits because they were her go to and something, which was easiest for her to eat. If your dd will eat them are great. 4 biscuits in a pack. They are apparently a common choice as they somehow seem more manageable for an ED sufferer as you’re not asking them to eat anything big. Even if you need to split the pack, anything is a win. If you can’t, don’t push it too hard if it will cause total refusal. Your appointment in the week will hopefully help and as long as your dd is feeling ok and eating. To get my dd eating 3 meals 3 snacks, we had to threaten not going on holiday last year 2 days before we left, and we meant it. She did comply. It was very dicey though.

I sent you a PM with the details of the ED coach. Idk if you saw it…

@PermanentlyExhaustedPigeon80 I’m sorry to have been tough. I am haunted by a period at the start when we were waiting for an appointment and I decided not to push on food. She restricted more and more during that period and I think I missed a golden moment when she had some motivation to eat before the disease got its grip. However that was during the 12 week wait for a first appointment not just one.

I try to keeping her out of the kitchen but it’s easier said than done. The snack alternative is a good one as ‘snacks’ for us tend to be almost equivalent in calories.

@wandawaves it’s a good idea to contact the GP. My experience has been that they are more cautious than adult eating disorder services though and more likely to send to hospital for tests. On her last admission, she had at least two of the indicators for very high risk of refeeding syndrome so I was glad she was in hospital. It is scary how suddenly it shows itself once they start eating something. She (of course) thought she was fine.

Sending love to you all dealing with this it really is the ultimate parenting challenge.

Got flashbacks to weaning dd1 as first time parents found myself messaging Dh to tell him she voluntarily ate a bowl of porridge etc.

Dd at the worst of it turned on me with the vicious accusation that Dh and I are both “obsessed with oats”.

@TheaBrandt1 - funny you should say that about weaning. I was talking to a friend yesterday about how this feels like having a newborn again in lots of ways. Sleepless nights, everyone on the edge of tears, spending lots of time shopping for foods that will be eaten, throwing food away, having to take everything day by day because it changes so quickly... going to the supermarket feeling like a holiday because it's a bit of time to myself out of the house!

@Shedqueen - no need to apologise. I'm sure you're right, and it's really generous of you to share your experiences to help others. It's just such a fine balance all the time isn't it? How do you keep your DD out of the kitchen? I think DD would freak out if she couldn't see what was being prepared, and refuse to eat. She obsessively checks packets, and I know she keeps a record of calories on her phone. There are certain foods she just won't accept now, including bread, cheese, butter and fruit juice. She's vegan anyway, but won't eat the alternatives. She's too alert to what's happening for us to get away with adding extra to any meals, and would just make her own if she suspected anything.

This weekend has been okay, but I'm so worried that the thought of school in the morning will send us spiralling backwards. Any tips for managing the transition from the weekend to a school day? That seems to be a major trigger for DD, even though I don't think there's a specific problem at school. She has friends, she is doing well academically, but I think the whole place is just overwhelming - big secondary schools are not well designed to meet the needs of ND kids, or maybe any kids tbh. But she's going to have to find a way to manage as there's no other choice really. The most frustrating thing is DD is really reluctant to take advantage of any of the adjustments they offer, which feels a bit like self-sabotage. Has anyone had any good experiences of school putting something in place to help with lunch, as I'm running out of ideas to suggest..?

@Mummyoflittledragon - thanks so much for the ED coach details. Will follow that up, and also do some research to see if there's anything similar a bit closer to us. Really helpful to see what kind of thing they offer though. Unfortunately threats / motivation don't seem to be working. Not sure if she doesn't really believe us, isn't able to think that far ahead, or is just too low / depressed to care. We have a holiday booked in July, and I said we wouldn't be able to go if she wasn't well enough. She just shrugged her shoulders. I'm beginning to wonder if she might need some medication to lift her mood enough to engage with the therapy and see a reason to get better. She's only 13, but she's suffered with intermittent low mood on and off for a long time. The Psychiatrist we saw last week suggested the most recent food refusal episode could be a form of self-harm, which is awful to think about but makes sense given her history.

@PermanentlyExhaustedPigeon80 It was easier because her CAMHS Caseworker laid down some rules at the start including staying out of the kitchen for meal preparation. . She followed those for a while. I used to rely on the caseworker to be the bad cop.

I try to prepare food very quickly to reduce her anxiety as much as possible. When she was eating more real food, I would get it ready before she got up and keep in the second fridge to reheat later.

I’ve given up trying to hide calories in food as she needs to trust me/ the plate. Also not really possible at the moment because she only eats two sandwiches a day that are made. Everything else is pre-portioned - yogurt in a pot, weetabix, supplements etc. That helps because she knows what it is and it’s quick to assemble. I know people who use a lot of ready meals/ gusto delivery to make food more controlled

As a person who loves food, it breaks my heart to see what she eats!

@Mummyoflittledragon what is the New Maudsley/Jenny Langley method? I've never heard of it. But I'm not in the UK so new info may take a while to get here lol.

@Shedqueen yeah I think I'll try and book into the GP tomorrow for bloods and also ask them for some repeat pathology request forms so we can go back without seeing the GP every time. But of course bloods take 2 days to come back, and like you said, refeeding syndrome can just happen so fast. It's bloody scaring me. She did ask her psychiatrist if she's high risk of refeeding syndrome and he said he didn't believe she was very high risk, but is at risk of course, and said to go to emergency with any symptoms. Our nearest large hospital is a 5 minute drive up the road, so that is good.

Well it was mother's day here today and DD took me out for lunch, it was my choice of venue but as DD loves sushi, I of course decided we should go and get sushi! She actually ate a reasonable amount. Not as much as she used to eat, but still a fantastic effort. I was so bloody happy. Plus 2 cups of water. Then she had that painful pressure feeling in her stomach that she's been getting lately when she eats, so couldn't eat any more. But yay, a meal!

Tomorrow we will start the 3 meals and 3 snacks. I'll take it easy for the first few days though due to my worry about refeeding syndrome, and then we'll (hopefully) work our way up. DD isn't a calorie counter so I can add in extra calories to stuff, but her problem is that she just doesn't like food and never has (I believe she has a background of ARFID as well), so it can be challenging getting her to eat at the best of times, and impossible to get her to eat a well balanced and nutritionally complete diet.

Hi everyone, sorry to see some new names - I’ve been keeping my distance for a bit as no change with DD (hovering between 1st and 3rd centiles for 2yrs). Anyway, she’s watched an animation at school about AN and eventually told me she identifies with ‘pretty much all of it’. After a while I got the link for it, watched it with her and broke it all down so I could ask if she felt the same way as the character. She’s (finally!) said she thinks she’s too big and doesn’t eat/restricts so that she will get smaller. If I didn’t make her eat she would skip meals etc etc.

So we’re back on the carousel! Waiting for appt with ED clinic and they’ve sent through their standard letter saying she should be in school part time (WfH 77%) but this has been really detrimental to her MH and didn’t help her gain weight through most of yr7 when they kept discharging her anyway so I don’t think it’s in her best interests for now (GP agrees with us). Anyone kept their child in school and seen an improvement?