Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@littlemissy12345 at under 80% DD was put on bed rest, no school let alone attending sports day. I think these things should all stop for now.

How much is she eating? She either is not eating enough and food needs increasing or she is exercising (we have a secret exerciser). Any change she is purging? Is she supervised for 30-60 mins after each meal to make sure there is no opportunity to bring it up?

Is she eating home cooked foods? loads of stews, add oils, butter, cream. I always aim for portions which don't look much bigger but which are much more calorie dense.

What snacks is she having? If she has nut/energy bars, there are a few which come with 250 or so cals. Will she have homemade smoothies? Again, add cream. Add cream instead of milk to porridge.

and decrease activity. Absolutely no sport and I would not allow school either. We were always instructed to stop school around 85%WFH. who thought sports day was a good idea for such an underweight child?

@Curlyhairedassasinsorry should have said - she isn't participating in sports day, just sitting on the sidelines. Her attendance has only been for half day sessions so far and only for her mental health. She's done 4 AM or PM in the last 3 weeks.

In terms of eating, she is not getting enough in her portions now. We followed all the guidelines from the ED team but it's not enough, we were at the point of only sticking to about 5 'safe' meals but I think we need to branch out now as these meals are harder to increase the calories in. I'm ready for a lot of push back I think but I know we need to challenge.

I've been signed off work for the rest of the school year. I couldn't do my job and support at home. My mental health is low though - I'm struggling to get any time to myself, I'm her safe space.

@littlemissy12345 If you can, just 'enrich' foods. Does she trink milk? We buy double cream and decant some of the milk and refill the bottle with double cream. Good shake, back into the fridge. Start with smaller amounts and build it up so she doesn't notice. If you tell us what she is having, we may be able to give you some better pointers as to how to increase.

Thanks for the advice all - we ended up going to A&E as she refused lunch today and was really dizzy. She's been admitted as her heart rate and blood glucose are low. She hasn't eaten anything since a small pot of yoghurt and fruit this morning. She's now refusing anything in hospital, and just looks so unwell. It's awful, but at least I'm not now solely responsible for her safety. Just hoping they actually have a plan to help her, and we don't get as far as an NG tube 😞

@littlemissy12345 I'm also signed off until the end of the school year, but at the moment can't imagine how I'm going to go back to work. It's so all encompassing, and I can't currently see a way through it.

So sorry to others in a similar situation - it's the most stressful thing I've ever dealt with, and I'm so on edge all the time. Normal life seems so trivial in comparison..

@PermanentlyExhaustedPigeon80 Really glad you went to a&e and good that she has been admitted. It sounds like the right place right no matter how scary that is. DD had her second admission this Spring and was fed via NG tube for almost a month. If it comes to it, be assured it's a lot less scary than it sounds. She needs first and needs food. When they have starved themselves for so long, often cognitive processes don't really work and they are really stuck. Might be worth also asking for Olanzapine. It was instrumental in helping DD to eat when she was first admitted.

I managed to work through all the admissions by working from the ward (and going home at night to spend time with DD1 who complex SN); and when DD wasn't in school, I worked from home. Luckily my employer is quite flexible but it's all very stressful esp as both DDs have very high support needs. Is a more flexible working arrangement like that possible? We have been dealing with this crap for 3 years now so had to get creative. But I was also never in a position to get signed off. I think some here have been signed off for several months at the time.

I’m glad you are not on your own with this worry now @PermanentlyExhaustedPigeon80

ED clinics really do not give us parents enough information for what to do in circumstances such as this. Well done for recognising that she needed hospital.
Try to get some rest for yourself now that you know she is being monitored by professionals.

Well done, @PermanentlyExhaustedPigeon80. I know it's awful to see them in hospital, but they will keep her safe in there and hopefully the ED services will step up whatever plan they have. If it does come to an NG, try not to be too distressed - it proved to be a turning point for my DD's friend. The most important thing is to get some nutrition into her. Hang on in there xxx

@Curlyhairedassasinunfortunately I'm a teacher - so couldn't be at home. I was trying to take time away when I didn't have lessons but then got to the point I was mediating a breakdown in relationship with my DD and DH over WhatsApp and calls. I wasn't doing either of my jobs very well so it seemed like the only way forward. She gained 1.5kg in the two weeks following so feel like it was the right thing. Let's see where we go from here!

@PermanentlyExhaustedPigeon80glad she's been admitted, that must be a relief.

Good work @PermanentlyExhaustedPigeon80 but sorry you’re having to experience this. I hope yesterday was ok.

we had our first FBT and have been given a meal plan at long last but she’s 76%wfh according to their algorithm (I made her 81) so pulled out of school.

what should I do if she won’t finish a meal? Last night gave an ensure equivalent then moved on to pudding (which she ate).

So glad to stumble upon this thread - DD16 is really struggling. She ended up in Paediatric ED a couple of weeks ago ( they actually gave her the choice to be treated as a child or an adult) & passed out twice. Bless her, the 2nd time was on the loo & she soiled herself 😢 Really is heartbreaking to see your child like that. And of course we knew she’s underweight but I hadn’t realised she only weighs 6 stone ( she’s about 5ft 4). She ended up staying in overnight & is now having visits from MARRS. We have been here before but never seem to get any further after the crisis visits are over. The waiting list for the eating disorder clinic is 8 months. If DD continues how she has been, she will weigh nothing by then! DH & I are desperate to do something in the meantime. Has anyone found BEAT helpful at all? DH has even spoken of getting DD sectioned although it would absolutely be the last resort & not straightforward.
Having said all of that, DD made a meal in the early hours ( she always leaves everything out so that’s the evidence). Cheesy chips & half a tin of beans. For her to have an actual meal like that is very rare. She calorie counts to the nth degree. At least the over exercising seems to have eased off.

@RabbitsRock sorry you’re here but welcome. Are you in the UK? If so you should be referred to ED services much quicker than that through your GP (although CAMHs usually have a waiting list if they think your DD is at risk they will fast track you).

@RabbitsRock have you considered a private dietician while waiting? That can be helpful and not too expensive. Perhaps for you if your daughter wouldn’t go?

@PermanentlyExhaustedPigeon80 I’m glad she’s been admitted. She’s safe so have a rest if possible and don’t be too quick to take her home. Not without a plan at least

@RabbitsRock Welcome. As @Glitterfarti says, your wait should be no longer than 4 weeks in the UK if your DD is at risk - and if she's in hospital it does sound like she is. I've found Beat courses very helpful. Beat might also be able to advise on how you can access support. You can contact PALS as well as your councillor or MP. It's important to start treatment as soon as possible. Once someone hits 18, treatment can fall off a cliff. Good luck.

This document says what commissioners should provide: cyp-eating-disorders-access-waiting-time-standard-comm-guid.pdf https://www.england.nhs.uk/wp-content/uploads/2015/07/cyp-eating-disorders-access-waiting-time-standard-comm-guid.pdf

@littlemissy12345 it's really hard with jobs that cannot be done remotely. For me, having a flexible role was the only way to stay in employment (and working part time on top). We do get DLA for DD now as she needs so much support which helps to take the financial stress off a little bit. No replacement for a full time wage but it definitely helps. Maybe something to look into?

How are you getting on @PermanentlyExhaustedPigeon80 ?

Thanks for the words of reassurance everyone. Sorry you're having a tough time too @RabbitsRock and hope you can get your DD seen by ED specialists soon. I hear what you're saying about just being patched up and sent home after a crisis. This is our 4th admission in less than 3 months, and each time DD has been more unwell than the last. I'm refusing to go home this time without a proper structure support plan, as we can't keep doing this. We've had a very tough couple of days. DD was fitted with an NG tube, and then promptly threw up the first attempt to get Fortisip into her. She then decided she hated the tube so much she was willing to eat a sandwich to get the doctors to take it out. They said they would consider if it she could keep it down. Once she'd eaten something and had more to drink (I think she was dehydrated) she then decided the tube wasn't that bad, and decided she was okay to keep it in for now 'just in case'. In fact, she said 'I wouldn't trust me'! Before we got to the NG tube stage it was just awful - she was grey/yellow, woozy, low HR/blood glucose/BP, sick and I think a bit delirious (not making any sense), but still refusing any food. She was saying all sorts of dreadful things about not wanting to carry on and not wanting to have to think about it any more. It was so distressing for all of us. I'm completely exhausted now, but relieved for the moment we're in the right place. We're seeing the specialist team today, and just hope they take us seriously this time. She still has a 'healthy' BMI, but has dropped 5kg in about 4 weeks, which is surely a massive red flag. Plus completely obsessed with calories, terrified of getting fat, and already planning how she's going to cut down again once she's out of hospital. She's on Inpatient Meal Plan 2, which is 1300 calories, and she said she can manage that for now because she knows it's very tightly controlled in hospital and they won't give her any more, but won't be able to carry on at home, and is terrified of going up to a higher meal plan. God, I HATE this illness.

@Glitterfarti There are some helpful 'scripts' by Eva Musby on YouTube to encourage AN teens to finish a meal, like this one:
We were advised not to persist past 20 mins for a snack and 40 mins for a meal though - otherwise the whole day becomes about eating.

It was important for us too that the whole day didn’t become about eating. Planning stuff that DD wanted to do was essential and helped to build up a life outside of the ED. It took time and a lot of effort. You need a superhuman strength at times. Solidarity to all those currently fighting AN

So dh and I have these 2 weeks off. We were hoping to do a couple of trips with dd to make best use of our time given we are not going on a ‘proper’ holiday- instead we have been stuck in the house/garden. Since we spoke to dd about not taking food upstairs she seems to be only eating dinner now - she is refusing to eat breakfast or lunch- at least while we are awake. She won’t leave the house and it’s all very difficult.
The ED team hopefully will come to our house again next week in an attempt to see her. I can predict now that it is going to be more taking to her through a closed door while she ignores them. Still she might slowly realise that everyone is taking this very seriously. At least the weather is nice and there’s a lot to be done in the garden..

How's your DD getting on @RabbitsRock? We're still in hospital and DD is doing okay on her meal plan (still only 1300 calories). We're seeing the ED team tomorrow and I think they're going to say she needs to go up to the next plan. She's really nervous about this and thinks it might set her back to zero again. I want to argue for increasing gradually (everything I've read about eating disorders and autism suggests treatment needs to be longer and slower, and that we need to work collaboratively with her rather than take full control - as her rigid thinking will cause her to shut down completely and stop eating again if she is told she can't have any input into what she's eating), but I'm worried the team won't have the time or expertise to work in this way. They've already demonstrated a very basic knowledge of autism (treating at as a deficit rather than a difference, and not really understanding why she needs adjustments to the environment in order to engage in appointments) and I think they want her out of the medical ward as she's her BMI is in the 'healthy' range.

They've also left the NG tube in, even though she's been eating normal food, as a bit of a threat I think, e.g. if you can't eat the extra calories from Monday we'll top up the food with the tube. This feels very punitive, particularly when she's not underweight so weight restoration isn't an issue - the challenge is preventing her losing more weight quickly by helping her eat enough to fuel her body each day. This is much more psychological than physical, and I think tube feeding at this point is probably going to do more harm than good.

She's now on Fluoxetine, which I'm hoping will help with the anxiety - and possibly some of the eating behaviours - and a range of other supplements. Does anyone know why Potassium is given? She hates it! I got very frustrated with the Psychiatrist on Thursday as - after meeting us for 20 mins - he was adamant that DD doesn't have an 'eating disorder' and that her 'disordered eating' is down to her anxiety, overwhelm, low self-esteem and undiagnosed autism. I agree that some of her behaviours are more on the ARFID side of things (and those probably won't change - and don't necessarily need to), but she's also obsessed with calorie counting, losing weight, being thinner, not getting fat, and the 'high' she gets from starvation. To me, those things are very different to sensory preferences and fear foods, and I think they're all getting lumped in together in order to push us back to generic CAMHS rather than the specialist ED team - which worries me, as I don't think they have the time or expertise to deal with entrenched ED behaviours.

Sorry for the rant! Seeing the ED team again tomorrow for a review, and trying to get my thoughts together so I an advocate for what she needs! Conflicted about whether she should stay in hospital or come home. Does anyone have any advice on what I should be insisting on in terms of a plan and support before we go home? I just don't want to end up back here for a FIFTH time in a few weeks with DD even more unwell than the last time...

@RabbitsRockhi an 8 month wait for ED treatment in the UK is not standard, there would be a good chance your dd would be dead by then. When my dd was unwell it was a 2 week wait.

Thet said you can start implementing the principles of family based treatment (FBT) with your dd now. The Eva Musby book is worth reading as it gives a good overview and practical advice on getting your dd to eat.

Who is monitoring your dd medically? She needs weekly blood pressure and pulse monitoring and regular bloods/ecg.

Anorexia is a deadly condition and children can become seriously unwell in a very short space of time.

You need to go back to your DDs dr and check why there is such a long delay, every time your dd eats less than 500 calories a day take her to a&e.

@PermanentlyExhaustedPigeon80 your DDs must have low potassium on her bloods? Low potassium is really dangerous and can cause cardiac arrest.

I agree the psychiatrist sounds unhelpful, there definitely is a push in some ED clinics to insist the ED is anxiety rather than anorexia which is really frustrating. My dd was anxious but not very underweight but was very much anorexic (wanted to be thin, terrified of gaining weight, terrified of higher fat foods etc).

Personally I’d be glad of the ng tube threat as I think having that as a back up will give your dd a louder voice over the ED voice. My dd needed my ‘voice’ to be louder than the internal ED voice in order to be able to eat.

We’ve had a few days away and dd told me when she was in the grip of the ED she would drink black coffee even though she hated it. I said not around me you didn’t and she laughed and said no I knew I wouldn’t be able to then 🙈😂

Im not naturally a strict, authoritative type person but when dd was ill I had to hold the boundaries really firmly which I wish I’d done from day 1 of the illness in hindsight.

Thanks @Girliefriendlikespuppies, that's really helpful. She's having bloods taken every two days, but nobody has told us anything about the results of those. The communication is pretty terrible in here tbh. The Nurses are nice, but the doctors just disappear in a puff of smoke, and we never seem to see the same person twice. We've been told so many times CAMHS are coming to see her, but nothing yet and we've been in since Tuesday. I feel really strongly that she has all the cognitions associated with anorexia, including fear of fats, constant food noise in her head, endless internal and external negotiations (if I have this, I can't have that), reassurance seeking about foods being under a certain calorie count. She eats in hospital because she knows the food is carefully calorie controlled, and they won't 'let me go over', but at home she is constantly terrified of accidentally eating too much. She also has no target weight or size in mind, but just wants to keep losing weight. I'm going to shout as much as I can about this in the review tomorrow, but the ED team already think I'm a hysterical mother because I keep pushing back against their dismissive responses. I'm fed up of the gaslighting. I may not be a medic, but I am an expert in my DD and have watched her deteriorating in front of me for the last 3 months. I've also done my research. If they pack us off home with some non-existent community support, we'll be back here in a few weeks or months and she'll be much worse. She's lost 6 kg in the last 5-6 weeks, which surely should be as much of a red flag as a low BMI? I don't understand why OSFED or Atypical Anorexia aren't being mentioned. It just feels like nobody wants to take ownership of her until she's in physical crisis.

Hi everyone, reading this thread (can someone post link to original please so I can understand context?) my 16y/o it has come to light in past few days, has the beginnings of a ED, with some binging and purging. I am yet to talk to him as am trying to figure out the best way so if anyone has any advice for the early days then please share. I noted a few months back he was weighing yoghurt and I said he really didn't need to , he was healthy etc. I suppose this was a small flag. But he has confided in a friend who has messaged me that he has recently purged some meals. I don't want him to dive into secrecy so am trying to work out how to talk to him, and do I go straight to GP/camhs referral? He is really into weights and healthy eating but does also enjoy treats. He cooks himself or for us alot esp now at home post gcses. Really looking forward advice and hoping this has been caught early so we can take action. Thank you for all your honesty on these pages, and good to see what a support you are to each other. Tx

Some criticise it but we found the Eva musby book a bible when we first found out and knew nothing about EDs.

We are cautiously optimistic after uncovering anorexia in March that she had had for 6 months. Brilliant psychiatrist through BUPA. Still under CAHMs. We on holiday as a family and Dd is eating relatively normally. She has no other MH issues though.