Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@BagpussSaggyOldClothCat sat with my DD who has just eaten a hot cross bum and jam and a cereal bar as tea will be late as we are doing an energy saving session 5-6pm. And she is doing no
exercise today
I would say she was properly recovered. And is back to normal. Well back to 15 year old normal
Missed out 13 and 14 year old normal

@twentyonethirteen

@Valleyofthedollymix is spot on. I've the 'Instant WFH' app on an old android phone (there doesn't appear to be an app for iPhones), & it's calculating a WFH of 63.57%. My daughter was hospitalised at just under 68% WFH first time round. 70% is generally the threshold for hospitalisation, from what I understand.

I've lurked on this thread for a long time, drawing comfort & also grieving alongside those of you going through the same thing (at the same time as grieving for my girl & myself too). I know so well the trauma, heartbreak, anger, bewilderment, resentment, jealousy, desperation & more that we all experience.

A little about me & mine. My eldest DD went into crisis in June 2021, seemingly out of the blue (as far as we were aware at the time). Over the course of a couple of weeks it became apparent that she was restricting to 200 cals p/d, then once I'd taken the scales away, 150 cals. I didn't know she was also purging. Trying to get her seen by the GP wasted weeks as he wouldn't do face-to-face consultations. We eventually ended up at A&E (for a 2nd time - sent home by Urgent Care the 1st time with advice to see GP ASAP), sent home as her obs were just about normal, then rung 36 hours later by a CAMHS Nurse to say we needed to take her to Paeds ASAP for refeeding admission. She was in for 19 days. Home for 3 short weeks, during which she started losing again. Then CAMHS called to say they'd got a bed for her at the Priory NHS ED unit. She was admitted 6 days before her 14 birthday, which pretty much broke my heart - she was so desperate to wait til after, but we were warned another bed might not come up for months. She was at the Priory til early Dec, then back home & back to school full-time - too much too soon, & she stopped being able to deal with going into school more than 1 or 2 days a week. Fast forward to June last year & she was discharged from CAMHS, still 2.5kgs underweight (her target is 87% WFH as set by the Priory, due to the low centile she's naturally always been on - though she still thinks that 87% is far too high!), because she 'wouldn't engage' with FBT. She just about held the same weight over the summer, then started Yr11 in September '22 determined to attend school, & boom - fully triggered ED (she'd never recovered, more held it at bay). She then had a SALT assessment & a Selective Mutism diagnosis - which put the whole 'wouldn't engage' with FBT issue into a different light.... The CAMHS Therapist had labelled her as stubborn for refusal to engage 🙄GP & school then re-referred, & 3rd Jan this year we had another initial assessment (once you're out of the system you're treated like you've never been in it), & she's just been readmitted to CAMHS for FBT again. So, back on the merry-go-round once more, just hoping that something this time is different. She's had a private Therapist since discharge from the Priory who thinks there's ASD in the mix. She was diagnosed with severe OCD while in the Priory & is medicated. I think she probably also has a form of Sensory Processing Disorder too. My youngest DD is 11, & dyslexic with a EHCP - but thankfully appears to not have any of her sister's issues or disorders. Oh, & I'm acrimoniously divorced from their father since 2016, who hasn't dealt with any of this particularly well (understatement of the decade)!
Apologies - that was a massive essay! Feels good to unload!!

@20thCenturyWolf welcome out of lurkdom - sounds like you've been on a roller coaster for the last couple of years - I hope this spin around CAMHS proves to be more helpful for you both.

@Zebrazz you've had some fab advice, the only thing I'd add in (apologies if someone has mentioned it already - I did try to catch up on posts) - have a look at Eva Musby - she has some helpful advice about how to engage with your DC. I found it was aimed at the early teen age group so you may find some helpful phrases etc.

@NanFlanders I hope the case conference goes well tomorrow - I think reiterating the safety aspect is key. I recall getting to one point in our CAMHS journey where I realised I/we needed to push back and take control of the conversation rather than letting them do so. If you felt able, I'd be inclined to start the meeting with "I'd like to start us all off by giving you my assessment of how the last x months have been, my observations on how my daughter is not managing and my very real concerns about our capacity to keep her safe" You're then setting the agenda and carving out what you want to talk about.

A wfh of 63% is really shocking, twentyonethirteen if you're still reading I really hope they have admitted her.

20thcenturywolf welcome to the thread, it sounds like you've been through the mill (understatement) over the last few years. When you say your dd doesn't engage with FBT do you mean family therapy ie talking therapy or family treatment ie you taking control of what they have to eat?

Lots it's amazing to hear how well your dd is doing.

Valley i was nodding along to everything in your post! I think the pattern to how EDs begin is almost scarily identical, it's like our teens read a book called 'how do develop an ED' and follow it to the letter!! It's also weird how similar the ED behaviours can be.

Good luck for the case conference Nan I'll be thinking of you.

Plodding on here, one step forward one step back as always! Had a day last week when I left dd some lunch as she was at home all day and I was at work and she text to say she was still hungry and could she eat something else 😳 umm yes love eat as much as you want!!

Then another day when she kicked off as I put too much cheese on her pasta 🙄

That said little things like her happily taking a vitamin tablet now (she used to hide them in her mouth and spit them out) and not being bothered about an evening walk are signs of progress.

She's going to be 17 in a couple of weeks 🤯

@Girliefriendlikespuppies in non ED chat but 'how are our children ageing chat' - mine turns 20 in 2 months - How in the world has that happened?! 20, like actual new decade and everything😱

Hi All, I have continued to follow everyone and although I said I would take a break from this thread for my own MH - well three weeks later and I’m struggling. DD has been discharged from CAMH but tbh she hasn’t attended a meeting for nine months - they were counter productive. DD is 107 wfh and CAMHs we’re pushing for DD to reduce her food intake so that she did not continue to gain. The adjustments have been implemented quite quickly - no longer having juice with breakfast or with morning snack and having discretion over afternoon and evening snack and no longer desserts with main meal. Supervision at school breaks and mealtimes has been discontinued as well.

What I have seen with her behaviour is that removing the mandatory snack times she sometimes has a snack and sometimes doesn’t - I struggle with this after spending 12 months fighting for DD to follow this regime rigidly it now it feels like an experiment and that hard work was for nothing. DH supports this approach, he refers to DD eating normally again - I am concerned that losing say 100 Cals per day will begin a back slide with DD’s weight. DH is fine with this approach - DD will be weighed at the end of each month and we will catch any losses there - my instinct is that we will end up having to intervene again and go through all the distress again.

I am exhausted and now feel I am fighting DH as well as DD and dreading going back to the distress which we have not had for months.

Does anyone have any experience of this stage of recovery - should we experiment in the knowledge that we have the safety net of catching any weight loss and deal with that then?

What are her hunger cues like @D1ANA22 and how confident are you in her responding to them? It is tricky at this point of recovery - a balancing game of trust - we've been in that space for about a year I think. Sometimes her hunger cues are off, sometimes we over-react to normal hunger cues. We try to bear in mind that she feels treating like she has an eating disorder magnifies the eating disorder voice.

What we're finding useful now is a sort of trade off - so when she feels she's not hungry and therefore has a lunch that in ED terms seems not enough, but in usual teen/YA terms would be normal hunger fluctuation, we try to go with that but the flip side of that is if she is craving something - so recently steak, or today a chicken burger, her honouring that hunger cue is as important as us recognising her lower hunger cues. But it is a tightrope... constant communication helps but as ever only at the right time!

D1 I hate to say it but if your dd is not showing any signs of eating intuitively ie noticing she feels hungry and then going to the cupboard to help herself, I would be very reluctant to back off. I think Tabitha Farrah talks about the need to overshoot the 100% wfh sometimes quite dramatically to increase the chance of full recovery.

Things like not having juice with breakfast is not particularly normal either.

Would it not be more sensible, rather than dropping any food/drinks, to start introducing more choice? So dd can choose what she wants for breakfast (obviously within parameters set by you) if she starts always going for the lowest calorie option you can then pull back.

This is the approach I've taken, slowly introducing more choice but keeping a close eye.

My dds anxiety has been high this week and I've also noticed she's grown again so am assuming her overall wfh has gone down. She must be nearly 5ft 9in now so tall so I'm pushing lots of high calorie foods again.

I found the Tabitha Farrah blog on the need to overshoot, thought it might be useful to show your dh D1.

https://tabithafarrar.com/2015/11/overshoot-eating-disorder-recovery/

Thank you @myrtleWilson and @Girliefriendlikespuppies for your useful insight. As background - DD chooses and manages her breakfast herself - ranges from cereals (weetabix with sugar, coco pops etc) to toast and her decision includes sufficient quantities.

Morning snack is at school and she buys toast / waffles - this was supervised by staff but now she has autonomy.

School lunches, the school reports to us that DD has attended the dining hall and whether she has a hot meal and dessert or a takeaway lunch to eat at GCSE clinics.

Afternoon snack, DD comes in from school at 4;30 and usually she is hungry then and dinner can be 5;15 - meal and DD usually chooses a dessert (often a snack from her drawer or yoghurt from the fridge).

Evening she can sometimes have a bowl of cereal. She has a sweet tooth and eats chocolates (birthday recently so plenty around).
She was 110% wfh at the end of November 2022, we have seen a drop to 107% over the course of seven weeks, in the seven weeks we have stopped including juice and high calorie desserts from the weight gain process.

After the last eighteen months I am living on my nerves that all this is too much too soon. She is making choices, and for those that I am aware of she is making the right choices. I spoke to DD yesterday about her not buying a morning snack at school yesterday and she told me to stop worrying, she had some of her friends crisps and waffle. The day before she took her birthday cake to school.

We have set weigh ins at the end of each month by the school nurse for the next 3 months, then she is off for her GCSE's.

During the illness she said she claimed to be lactose intolerant - we broke that restriction and nutritionally she eats all food groups now.

So what am I asking - I suppose from everyone's experience is there anything I should be doing or not doing. DH has the mindset that DD needs to be eating independently in preparation of college in September 2023 - and also if she has a summer job this year. I am stuck in the three observed meals and 3 snacks from the refeeding phase.

@Girliefriendlikespuppies I do prefer your approach of gradual changes, then we can see what works or what doesn't - the approach we have taken does not allow us to see where any short comings are. DD is communicating with us after not talking for months, but with the ED it is hard to know around food matters whether she is telling the truth or not about what she has eaten when not supervised.

@myrtleWilson how do you know what your DD's hunger cues are and when - does she tell you or is this observed? DD can eat a full steak and chips at dinner but last night at suppertime she was not hungry for a Cadbury's cream egg. And after eighteen months of AN it is hard to not only relinquish control (you must eat this egg) but also to trust them (am I speaking to my DD or the ED). DH believes at this stage we are speaking to DD.

@NanFlanders I think of you and your DD everyday and admire your strength. I believe that neither the bad, nor good, moments in life ever last indefinitely and so this too shall pass.

D1 I know what you mean about living on your nerves, it sounds like what you're doing is probably about right but I can understand your anxieties. I also am not convinced that dd eats as much as she needs to when out and about but she's nearly 17yo and I have to allow her some independence.

We don't weigh anymore as it was just too triggering but I think having a monthly check in for a few months is sensible.

I still think if I pulled back all control that dd would fall backwards though, it's so hard.

I still insist on a decent pudding every night and don't see that ever stopping tbh. I think you have to put really careful that you're not giving mixed messages about good/bad foods and that some level of restriction is okay when for recovering teens it's not.

Hello all. I hope you don't mind me dropping in? Im sorry to read all that you are/have been going through.
My mind is constantly whirring at the moment and I feel paralysed not knowing what to do.

My DD (just 18) hasn't had good MH for quite some time. She's low, irritable, completely lacking in any motivation really.

With hindsight her eating has been somewhat ritualistic for a while e.g fixating on a particular meal and eating it religiously every day. Then a specific fruit and eating that all day every day. In the past month or so though we're seeing a total reduction in all food eaten...barely eating a meal, trying a couple or mouthfuls then throwing it away, avoiding eating meals with the family. She has always been hugely enthusiastic about food and had a big appetite. Lately (I've been trying to keep notes where I can) I don't remember when she last ate a proper meal - just snacking here and there. Some days I think she's only had around 500 calories a day.
She is visibly losing weight.

She is basically nocturnal (a whole other issue!) and so will eat nothing all day, then I notice an array of snacking remnants in her room the following morning, but nothing adding up to a great amount.

I'm so worried for her. We haven't talked yet but she must see I am asking her more about food lately. I am fortunate in having a consultant psychiatrist in an ED service as an acquaintance. He has given some good informal advice, but you guys know how this feels and have been through so much. I am really hoping for some words of advice. For example important to get a current BMI as a starter. No idea how though.I feel as if I'm going mad, questioning whether I'm over-thinking everything. Yet my instincts are screaming at me and I feel sick with worry.

@D1ANA22 your first post really hums with completely understandable anxiety. The progress is so hard fought for that it makes for a terrifying fear of backsliding. I definitely think that I need some sort of post-traumatic stress therapy as although DD is much better, I've got deep scars.

Your DD is a good weight and it seems as though she's eating pretty well. Honouring hunger cues is good in principle, but I think we all know that eating is a lot more complicated than doing so when we're hungry (unfortunately).

Only you know what stage she's at, but I would say from as a person who doesn't have an eating disorder, fluctuations in appetite are normal. Not wanting the creme egg might be perfectly normal. At a certain point she's not going to eat three snacks and three meals at preordained times every day and that's fine.

@Mombingo welcome always feels like the wrong word, but welcome... My DD was much younger and had much more 'typical' anorexia so I can't offer any advice other than to say that it sounds like you're very observant and are doing all you can. Can you get her an appointment at the GP or with the nurse to weigh her (blind if necessary) so that it's not you having to do it?

@D1ANA22 it is so hard to step back. My Dd was around this wfh when we were discharged. We haven't weighed since (it's been 6m) but I would say she has slimmed down.
I have found it so hard to step back. She has been brilliant at eating snacks and meals. But I was always checking and on at her. My anxiety was v high. Over the last few weeks I have finally been able to mostly let go. And I have realised the issue was my post traumatic stress. I literally CANNOT go back there again.
What helped me is speaking to DD and telling her that. I tried to explain what drove my anxiety and she understood. So she will.often let me know that today she isn't hungry but when she us she also tells me she has eaten xyz.
I have to trust her. I think you have good wiggle room with your DDs wfh.
For me it's about behaviours not the absolute amount of food. So i watch for those behaviours that there were at the start. If I don't see them I have to trust she is eating what she needs.
Also must add that my DH despaired of me and was often v cross at my continued anxiety. He was able to let go far more easily. So much so that he made her miss lunch the other week whilst watching a football match, she had a premier inn breakfast and then NOTHING until she got home at 4pm. My anxiety sky rocketed when they got home. I sat with it. And nothing awful happened. But my god that took all my will power.

@Mombingo My dd is younger but what I will say is that if your mum instincts are screaming at you, believe them and act.
Get her to the GP and tell her you are worried about her weight loss and it needs investigating.

@D1ANA22 in answer to your question - most of the time she eats intuitively now - she'll have impromptu dinners out with her friends and I don't fret about those in the way I used to. I think it is a two way street - we have to respect her when she is saying she's not hungry enough to eat x,y,z but we ask her to respect her body when she is hungry. Sometimes, she'll check in with us about a particular craving - seeking reassurance that its okay. So yesterday she messaged me about 3.30 saying she was craving a McDonalds (very rare!) so I picked her up about an hour later and we popped by and she got a chicken burger meal. A couple of hours later at home she mentioned she was still hungry and had a bowl of bran flakes. We do gentle prompts more in line with her day to day activities (nudging her to have a bigger snack if she's working over lunchtime) rather than a strict 3x3 . It is really hard though - I think you have to fake it until you make it with pretending you don't have the searing anxiety...

@Mombingo follow your instincts but you may have to be creative about where you get support from as post 18 is a minefield. BMI may well be used by GPs but I think its flawed in this age group - so reiterate "state not weight" in any conversations (would she be amenable to GP visit and have you there?). Have a look for local charities who may be working with 16 plus - there is a network of regional eating disorder charities but for the life of me I can't find a link to them right now - if you say with region. you're in I may be able to point you in a possible direction...

Thank you @Valleyofthedollymix and @Lottsbiffandsmudge

It's so hard now that she is legally an adult re GP appointments etc. She actually has a paediatric appointment tomorrow (routine transition from the service) and will be weighed. I'm really hoping I can muscle in and find out then! I know that dd will want me to go into the actual consultation with her.

Failing that hoping the paediatrician will be sympathetic to letting me know dd's weight (she knows us of old).

@myrtleWilson I hadn't read your reply. Thank you. I haven't talked about my worries with dd at all yet. She is a tricky customer at the best of times (v.oppositional, won't have blood tests) and is a closed book. Huge defences. Honestly been thinking a lot about ASD with her recently.

We are in West York's

Maybe give these folk a call? I'd hope they operate a 'no wrong door' policy so if its not them, they'll be able to point you towards local services (dependent on referral routes, cost etc)
www.commlinks.co.uk/?service=connect-west-yorkshire-adult-eating-disorders-service-peer-support

They're part of this wider NHS service but it looks like they have a regular carer's zoom call which may be helpful for you if not yet something for your DD to access

www.leedsandyorkpft.nhs.uk/our-services/connect-west-yorkshire-adult-eating-disorders-service/help-support-people-affected-eating-disorders/

Thanks everyone for all your concern and kind messages. (@D1ANA22, what you said was lovely: it reminded me of a Japanese saying: "No rain lasts forever.") My DD's case conference went reasonably well in that they aren't discharging her for a while and agreed that she couldn't currently be kept safe at home - in fact, they have posted security outside her room to stop her absconding. However, there are apparently no Tier 4 beds anywhere in the country - nor, in fact, in Scotland. She has been eating or drinking Fortisip for 2 days now to avoid feeding under restraint - which is clearly good progress. Team have however agreed that we should give up on FBT, as she has consistently declined and is now much much worse than 12 months ago when we started it. The next step is AFT (adolescent-focussed therapy). Has anyone had experience of this?

Mom bingo welcome to the thread (although sorry you're here!) weight loss is what can trigger anorexia so if you believe she's loosing weight you're right to be worried. It sounds like your dd has a lot going on and that you're doing the right things - speaking to a Dr, keeping a close eye etc. I'd make sure there's plenty of foods available to her that she likes to snack on and keep encouraging her to eat.

Nan glad the case conference went okay, sounds like they listened which is good. No direct experience of that type of therapy, did they explain what it would involve? So frustrating re the lack of beds, can you send your mp a strongly worded email? I appreciate that's probably not a priority right now but it makes me so angry that seriously unwell children are left like this. If your dd needed cancer treatment you wouldn't be told there's not enough specialist beds!!

@NanFlanders that sounds like progress. I read an article about when FBT doesn't work and then the AFT approach - I wish I could find it now but I'm sure someone on the thread may have better resource to point you to.

@Girliefriendlikespuppies my DD is due to go to college in September - how do you approach morning snack and lunch with her whilst she is at college? What are college facilities like for lunches nowadays. We have had the comfort of a small secondary school and observed meals and now all I can think of is the daunting prospect of a large sixth form college.

Apologies as I seem to be domineering the thread - DD's discharge and step towards independence has put me on high alert.

@NanFlanders this is the article I referred to in my previous post - anorexiafamily.com/aft-adolescent-focused-therapy-anorexia-afp-an/

@D1ANA22 - Thanks for that! And I just wanted to say well done for getting your DD to where she is now. I've no advice on the next stage - I can see it must be hard to let go. It sounds like there is a safety net in place with the weigh-ins - and I think I'd want to see weight maintenance rather than loss. Hope your daughter has an amazing time at college.

Hi all, hope it's ok if I drop back in to get your opinions on a couple of things.

Just a recap on where we are with DD13. Found out she had been restricting late summer, tried to start FBT on our own whilst trying to get support. She went on good strike and the beginning of November and was only drinking smoothies/fortisips. Since then she's been accepted at the Maudsley and we've been gradually working up to eating properly again 3+3

She's now on cereal and a breakfast smoothie, a normal (if limited in choices) lunch, and 1/2 dinner portion topped up with homemade smoothies. Snacks again are limited in variety but are normal.

She's been gradually restoring and has been cleared to dance again.

The reason I give this background is because the school has at short notice put on a residential trip for her year, taking place in march. It's two nights away.

DD clearly wants to go (all her friendship group is going) but the food is an issue. She's still got a huge fear of eating in front of her peer group, and also distrusts anything not made by me. She got really upset when I said it wasn't a good idea to go, and said she could do it if she had supplements instead of meals for the two days (with normal snacks).

I feel very nervous about this given her past. The ED team initially agreed but given how upset DD got with her answer, they are now saying that as her weight is OK and it will encourage her to be away from me/more independent that it would be ok to give the supplements for two days. Ultimately though they have put the ball in my court to decide.

I don't want her to miss out, but at the same time I don't want to imply it's ok for her to live life without eating normally. What are your thoughts on missing out vs relaxing rules for two days? I am wondering if we position it as a backup plan, but make it clear we're going to work towards addressing some of her anxieties in the meantime? We need to pay deposit tomorrow or she won't get a place.

Sorry that's really long, I have another question but I'll ask that later!