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

[Curlyhairedassasin]

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

@WhatsitWiggle Bless you. It sounds as if you’ve done everything right. Sometimes it just isn’t possible to get them to eat and you’ve been so brave taking her to A&E. Are you still there now? Hopefully your dd is ok and getting the attention she needs. If you haven’t taken her before, she now knows if she doesn’t eat, she does have to go to A&E and I’m hoping for your sakes that this will be of use in the future if she threatens not to eat again.

My dd eats the same thing every day at home and will only eat differently when out with friends. And still when she eats out, she eats the same thing each time. Some people find that’s the only way they are able to eat as it quietens the voice. It’s her medicine as Laura Hill says on the TED talk. I know this is totally contrary to what you will be advised to do with meal plans. My way is one way of doing things and if it will allow your dd to back off wanting to manage calories, variety can be worked on later.

In the beginning and for a few months, dd ate one meal of carrot sticks and humous plus grapes at home. I used the same square tub to put the carrot sticks in and increased the amount by an imperceptible level every day and she didn’t notice. I was painstakingly ensuring the sticks were the exact size of the pot to maximise the surface area to dip in the humous and weighing the carrots before and after she ate and logging the calories. As her intake increased, I also used learned to not giving her a full pot of humous as she wouldn’t go onto a second pot and also not to give her an almost empty pot. I would give her a pot between 1/3 and 2/3 full and she’d start a new one and eat more that way. I weighed everything before and after and logged the calories. I also chose the most calorific humous I could find. At the time, she was eating this in her room.

Now she’s eating dinner downstairs at dinner time. But everything else in her room. We have had a couple of lying / stashing food moments and I’ve always been swift to stamp that out. The last you wrote, your dd was back in education. My dd was eating just one meal a day during exams, which was really hairy. After a while, I did things like told her she had to eat at lunch to be allowed to go to school. I just sent her a text every day to remind her to fuel her body and that I love her.

At home she’s ditched the humous and is now eating salad (lettuce, cucumber, grated cheese and sweetcorn). I slowly increased the amount of cheese by a gram every couple of days. In the beginning she occasionally got mad and said that’s a lot of cheese and I’ve had to dial back a little. When she says something occasionally about it being a lot of cheese, I can now sort of shrug it off as oh maybe there is but that’s ok, you can eat it or oh I hadn’t noticed or oh I was distracted and yes, there is but it’s ok you can eat it I think. This wouldn’t have been possible in your dd’s current state. I can also negotiate with her now. The other thing I started to do maybe 6 weeks ago is to add tiny dots of olive oil to her lettuce and I roll the sweetcorn in olive oil and pop it in the fridge. The sweetcorn sort of absorbs the oil. But I hide the sweetcorn under the cheese in case she spots this. And I hide the increased amounts of cheese under a layer of cucumber. It’s all about changing things imperceptibly.

We also have a lot of food in the middle of the table for everyone to share. Chips, sweet potato fries, chicken but dd is veggie as part of the ED. Dd also has to eat a cheese roll and 2 mozzarella sticks. This is what has been negotiated with her and built up over time.

Having dd’s friends around helps her to relax and eat. Her friends have been fundamental in getting her to eat. We took a particularly helpful friend away with us on holiday in August. If friends are important to your dd, it may be worth getting them involved. In the beginning, dd was really struggling to eat at home at all and she had a conveyor belt of friends taking her to a restaurant every day for her one meal.

Dd is now lathering copious amounts of butter on toast in the evening. This was a total fluke as I trashed my gut eating quorn because of dd going veggie and I was trying to encourage her to eat it (didn’t work) and one of the few cures is butyrate, which is found in butter. She has seen me eating crackers and butter every single day for months and months. Then 3/4 weeks ago dd decided to put a little bit of butter on a slice of bread and it has snowballed from there.

I posted the Charlie Waller link upthread to the workshop this weekend starting tomorrow evening. I have been doing loads of these. As you know, I am using an eating disorder coach as well, who is very helpful. But only one person. I have learned so much from the workshops and dd has progressed so much because of doing them as I am slowly able to apply what I have learned from them. Jenny Langley reminded me on Tuesday just how far dd has come since she met me 3 months ago. And it’s true. All using micro steps, which is what she / the New Maudsley endorses.

All of this works well with my dd because she has consistency and she lives at home. She has at times got very nasty willing my dh and I to split like her friend’s parents so that she doesn’t have to live with me anymore - dh just doesn’t have the time or skill to get dd to eat systematically and would be very much like your ex. Is there any way you could keep your dd home with you for the foreseeable?

How did you get on at A&E @WhatsitWiggle ? I hope they were helpful. We had to wait for four hours when we were there on Monday pm but they were lovely when we did see someone. Everything seems to move so fast when they are eating so little doesn't it, every passing day brings more worry. I found that when we first realised my DD was restricting her diet she was so proud of her weightloss and felt fantastic. As the days have passed she's become weaker and seems a bit more willing to try to eat. We have always reasoned with DD and trusted her make her own decisions, so this new approach of trying to decide everything for a her is very difficult. I hope you can find some support.

@NanFlanders Thank you for your reply and for the hopeful story about your DD - has she been able to say what started the ED, and what allowed her to turn things around?

@Mummyoflittledragon We are keeping DD at home for the rest of the week, she is in first year of sixth form and worried about getting behind in her studies. She really wants to go to Uni, and needs good grades, I hope she is able to catch up, as she won't want to retake a year, although not sure how I feel about her leaving home at all now. Sorry, I'm rambling a bit, my point is that she won't need to see the school counsellor, who is a probably very well meaning, but completely untrained in this area.

Can someone tell me what we can expect at the Maudsley first appt? Will DD get some talk therapy, and do they offer any medication? She has never had any medication before, but I have read that some anti-depressants can help.

We are having some luck already with the eating around the table and just chatting about the day, on some level DD is really enjoying all of the attention, cosseting and family time.

Thanks again everyone for this thread, it's been a complete lifeline to us

@Mummyoflittledragon interesting to read that your DD eats the same every day. DD is exactly the same and it's the only way we can get her to eat. Been like that for over a year. Thought we are the only ones.

@WhatsitWiggle Hope A&E went ok. I think it's a common trajectory that food restriction is initially so bad, they they need to be admitted. DD was so incredibly violent before she needed an emergency admission. FTB just did not work. It still doesn't (18 months on) but she hated the stay in hospital so much, that she is eating enough to stay out of it. far from recovered but eating did improve after being admitted.

@TempersFuggit re medication: DD had been put on sertraline which did nothing, now fluoxetine (still no effect on her low mood). but I know others found it helpful. Sertraline is more for the anxiety .What did help us with the eating was Olanzapine. It's an anti psychotic drug but used in low doses, it's used for anorexia as well as it reduced the severe anxiety around food. Not sure what the threshold for prescribing is. DD was initially not even eating after an emergency admission to hospital and put on olanzapine then. I believe it was instrumental in enabling her to eat again. Been on it for 18 months and still nowhere near recovered. It's not a magic bullet but may be worth asking about depending how strong your DD's anorexic voice is.

@WhatsitWiggle do you have any negotiating power? If you don’t eat then you won’t be able to go to school, sports, friends etc. - choose your words carefully though as threats are unlikely to work. Also, it’s normal for them to storm off, shout etc when you try to reestablish eating. You may even get the food thrown at you so be careful. Keep persevering is all I can advise and baby steps as Mummy said. it’s really hard. @TempersFuggit first appointment they will probably speak to your daughter alone and then to both of you. They may do obs and weight check and will probably ask you to get bloods done and at what interval to do them going forward. This will probably be done with your GO/local hospital. They should set out a plan and if you don’t see the dietitian today then you will probably see one shortly. You may be advised to start vitamins/calcium.
Have any questions ready to ask and ask who your contact is in case you think of a question later or need advice. Hope it goes well.

also meant to say that some areas have people who can visit you at home and help prepare meals and sit with DC as they eat. It’s a step before hospital that can be very useful if DC won’t eat for you but may for someone else. It can also be of help after hospital discharge.
@Curlyhairedassasin sorry to hear that things are so tough. Thinking of you

Thank you all so much. The A&E doctor was lovely, was 2:30 before we were seen but DD got really distressed before and a wonderful nurse came and talked to her, she was so good. We chose to leave, as we have a CAMHS assessment booked for tomorrow anyway and DD has a phobia of children so being in the children's hospital is torturous for her. Her obs were normal so they weren't going to admit.

She's just woken up and is having a shower, apparently for the first time in a week. She's so close to burnout again and it took months to recover from that and she really doesn't want to miss out on learning. If I try to use that as leverage, she perceives it as a threat and will do the exact opposite ie not eat.

The doctors advice was pretty much the opposite to FEDS and was to go really slowly. Let DD push her own boundaries but with gentle encouragement. Play the long game.

@Curlyhairedassasin DD has a private psychiatrist just for medication, she was on sertraline but we're going to switch to fluoxetine at Christmas. She suggested a low dose of Olanzapine too - this was before the anorexia but to help reduce her explosive reactions to stress. Ex is in charge of that because it's funded through his BUPA so I'll tell him to sort out the prescription ASAP.

Thank you for all the support. It's good to hear success stories too.

@TempersFuggit
If your dd will eat with you deciding what she will eat, that’s great. My dd would never have engaged with this and would have fought to the death. You will learn a lot on the workshop this weekend. The New Maudsley approach is working for us with a bit more push when has been needed such as just before we went on holiday.

As for your dd’s holiday, there is no way on earth that she can go on holiday without someone, who is supportive and understands how to get her to eat. Cajoling and begging won’t work. I wouldn’t even let my dd go now with someone other than dh and she’s on the road to recovery; adhering to the meal plan is everything. As for your dd, idk if she will be able to go with you either. It’s such a short time away.

We got dd onto 3 meals, 3 snacks by giving her a meal plan 2 days before the holiday with timings only, telling her we wanted a great holiday and this was something we didn’t want to try and enforce during our time away. So we could only go away if she would agree to eating to plan there and then otherwise we weren’t going. She went ballistic and ripped up the plan. I said ok we weren’t going away. She said she wouldn’t eat. I said, ok bed rest. She said ok. And I freaked inwardly. We were in the car about 45 mins from home with dh on the phone and instead of going home, I headed to her friend’s house, who we were taking with us to break the news to her that we weren’t going. About a mile away from her friend’s house, dd agreed. I cannot express how relieved I was. Apart from when she is unwell, she has stuck to this ever since.

I do give dd a heads up when something is was changing. So the day before implementing the above, I said to her, today is the last day you can eat breakfast this late (I’d been trying to introduce breakfast and she could only go out once she’d eaten, which was 11am or later). It gives dd time to get used to the idea something is changing rather than springing it on her. It works with dd for certain things. Not for the foods that she will eat.

As for keeping your dd off, I hope you will be able to use going back next week as leverage. My dd was told if she doesn’t eat I will collect her. I was sending her a text daily with varying wordings to the effect of please remember to eat lunch I love you. Then I checked the school account every day. This was enough for her to give herself permission to eat. She wasn’t eating breakfast during the few months before GCSEs and I couldn’t get lunch into her if she wasn’t at school so it was a balance and had I kept her off, I’m pretty sure she would have stopped eating. She confessed some time later that she only ate one triangle of 2 sandwiches at the time and didn’t eat the crust either. But it was something.

I still check she’s bought her sandwich and crisps. Now that she’s in 6th from, she buys an egg sandwich, crisps and drink from coop every day and eats everything.

@Curlyhairedassasin
Jenny Langley talks about some people needing to eat the same thing for a long period of time and she advocates this if it is a way to get someone to eat. Dd even eats the meal deal at the weekend. Most Saturdays she in town with a friend so goes to coop or Tesco. Unless we are going out to lunch, on Sunday we buy it for her or take her to get it.

From the workshops I’ve attended, I understand this is contrary to what is advocated in clinic. Some parents are completely exasperated with CAMHS / FEDS as they are expecting parents to refuse to let their children eat like this and prevent them from doing activities if they won’t eat to a set meal plan when in fact if they were allowed to eat what is a reasonable meal and the same thing daily, they’d be fine. This approach of enforcing variety would not work with dd at all. I have tried to this, giving her the aforementioned warning. What actually happens is that these foods instantly become the least desirable food on the planet even if she ate copious amounts before being unwell.

Now we do it organically. Dd ate some takeaway at a friend’s house and has been eating Chinese take aways for a couple of months now - this is the only thing she will eat at home apart from salad and the meal deal but the latter is alone in her room or with friends. Ideally she will restart meat as she is unwilling to eat enough variety of plant protein and went veggie as part of her ED. So I am starting to put meat as a share plate the middle of the table in the hope it will eventually become the new butter. On Tuesday, she ate 1/3 of dh’s Singapore chow mein picking the bigger bits of meat out. This is another micro step.

Jenny is a big advocate of the Laura Hill TED talk and says that eating the same thing is comforting, gives the ED sufferer permission to eat and also quietens the ED voice. Laura talks about taking your medicine rather than eating. So I would say from what I’ve learned, as long as what your dd is eating is balanced, what she is eating is fine. If not, micro tweaks to get there. And idk if you are able to increase quantities in micro doses as I’ve described above.

To get there, I regularly drip fed to dd that she needs to ensure she eats enough protein. She hates it and is vile but it does go in. Rather like dd seeing me eating butter day in day out, this approach is paying dividends slowly. I’m wanting to go at the hare’s pace. But for some things, it’s more like a tortoise in slow motion and I think the more the brain is fed, the wider the variety of foods but that will be dependent on the person. I’m basically starting from scratch again with dd as she ate like this as a baby / young child. And I am buying her foods from different places. Mozzarella sticks and salad dressing from Sainsbury’s, cheese rolls from M&S (courtesy of Ocado), ketchup must be Heinz and so forth. I know this has been frowned upon upthread. But it works for dd and the ED coach said to me yesterday that she can see dd is coming out of fight or flight, which means her brain is starting to heal.

@WhatsitWiggle
The gentle approach you’re talking about may be New Maudsley. All units should apparently now be New Maudsley trained. As your dd has autism I would look at the PEACE pathway for information. https://peacepathway.org/about-peace. This is the latest evidence based approach to treating people with autism and an ED. There is also an argument that treating every person as though they have autism is a positive thing as a starved neuro typical person will present as though they have autism.

I’ve had an email this morning asking to share that there are a few places left on the workshop this weekend. So I’ve attached some info.

@Mummyoflittledragon Thanks for the post. We have already resigned ourselves to DH and DD not going really, it's such a long flight and hanging out with her cousins might be a bit anxiety-inducing, although they are lovely of course.
The whole family living on the other side of the world thing, has been an issue for her for a long time, and she has been looking forward to this trip for months, so telling her no is going to be really hard for her. We'll speak the Maudsley and see what they advise. If they do say she can go, I will have to go too - I was due to spend xmas with my mother - but we will do what we can.
Thanks again

apols for my previous rambling post! We have now had our SLAM appt, and dd has been diagnosed with Anorexia, and is on a 4 day refeeding schedule, prior to our next appointment on Wednesday. Our cupboards are now full of biscuits and the fridge with full fat dairy, and dd is stoically ploughing her way through a tuna sandwich. I can’t believe it. She’s pretty pissed off about it, but is doing it because she wants her life back.
Health check showed her heart is underperforming so they have said that she is not fit to fly. She has also been signed off school until January, so all going as well as can be expected.

How is everyone getting on?

The PRU isn't working so DD is moved to an even smaller sub-provision and all reintegration into mainstream has been stopped. The new provision is super small; I think 6 students in total. She also stopped all talking in school (selective mutism). Things seem to get worse with her MH all the time (eating not great but she is sticking to her rigid plan at least). She ran away from the PRU last week (to do god knows what). Thankfully they found her. At least our request for an ECH assessment has been accepted and we are having assessments done... been dealing with this crap for 2 years and nothing got better - everything is so much worse despite so many people and agencies involved. I mean how is that even possible? I just want to help her but have no idea how. She says the hallucinations and the paranoia are getting worse...

Sorry to hear that @Curlyhairedassasin it must be really tough.

DD now knows Xmas trip is off - heart rate too low Drs unwilling to allow it - so we are planning new things to look forward to. Eating is still going well but she is convinced that she’s fat and disgusting :(
she’s generally happy and enjoying being cosseted.

Hi not been on in awhile. DD seems to be in recovery or so we thought. Was hoping for camhs sign off soon. Anyway this week learnt she's not been eating her snack and only eating sandwich at school. She's been trying lots of things even takeaways, eating popcorn at cinema and even some chocolate for example. I think we let it slip allowing her to help herself to snacks and she has been skipping evening snacks too. I feel terrible I've taken my eye off the ball and given her too much freedom. I noticed there were lots of things in the fridge that should have been taken to school for lunch. She admitted she's not been eating much at school for a couple of weeks but wouldn't be specific so might be longer. Her weight is fine I will discuss this on our next appointment. Anyway we are going back to making her eat the snacks and making her lunches for her. She was meant to be staying at my mums tomorrow my partner thinks it's not a good idea worried she won't have her snacks and that my mum won't make sure she is. I don't know what to do she was so looking forward to going. Going to stay over and watch pantomime the next day with her cousin. and then I'll pick her up tomrrow she can eat her dinner before we drop her off. What would you do? allow her to stay and ring to make sure she's had snacks or just let her go pantomime and pick her up after. She's going to be miserable not being able to stay over with her cousin. She's eaten her snacks today but did kick off about the evening one but did do it after moaning. She is adamant she will eat her snacks, I've told my mum my concerns.

@Whippetlovely
I can tell you how I handled things a few weeks ago when I found out that on the day of a friend’s party that my dd had thrown her evening snack away the previous evening. I didn’t have an opportunity to talk to her before the party as she went directly from school. I told her I was picking her up from the party that evening at about midnight. She’s 16 and was very angry about it. However, I felt there needed to be a consequence so that she understood it was serious. I would have prevented her from going to the party but it wouldn’t have worked. She’d have just run off, she’s a flight risk. However, I am aware that this was just one of a string of parties and she’s now refusing to do sleepovers anyway, developing ocd tendencies. The next day we discussed this and she agreed to not throw food away again - this is the second time she’s done it, the first time it had been going on for a while before one of her friends told me so I felt it needed swift action.

In your position, with your dd it’s more tricky. This sounds like a one off event and I checked her age, bless her, she’s still so little, 12 or 13. I think from a continuity pov, it is important that the ED knows you mean business. Is there any way you could stay over at hee grandmas house? Or her grandma and cousin could stay at yours and you work towards another sleepover in a few week’s time once things are back on an even keel? Perhaps having this as a goal could help your dd to beat the urges. I don’t think this is about trusting or not trusting her grandma, this is about doing what is agreed and ensuring she is back on board. And if not being fair on her grandma so you want her to have fun and you want her to do what she’s agreed and this way she can still have fun and you can work towards something.

@Curlyhairedassasin
I am sorry things are still so tough on your dd. I am wondering if the hallucinations and paranoia are ocd related. Can the new school help with that? Or can you speak to CAMHS / the GP about accessing therapy? Idk if she would be able to access that though being so shut down. Maybe some counselling for you? Play / art / some kind of arts therapy could perhaps be useful? Does the school offer some kind of therapeutic sessions with the class or individually? I do hope things will settle for your dd now she seems to be in a more relaxed environment and that once she has got used to the environment she will feel safe enough to start talking.

I know this may sound counter productive and contrary to what I’ve just said. Is there any chance that she is shutting down further because so many people are involved and she can’t cope? Idk if you have looked into the courses with Jenny Langley (she’s doing something else until April next year), however, The Charlie Wellar trust workshops tackle this issue. It’s what I was doing to dd. The more I tried to pull her out, the more she retreated. The ED coach told me this and I had to really change how I was with her.

As for my dd, she is doing ok. Still very rigid in her eating, big arguments about adding the tiniest amount of food on dance days. I also have a big issue with my dh. Not as bad as yours. He is completely in fight or flight. Cannot cope with anything. We are fighting every day. I am so pissed off with him. He is so pissed off with me. It’s getting really bad now. He’s planning on taking dd away for a few days after Christmas to see his dad, who’s been unwell and to visit Paris. He’s French. The ED coach has told dh that he should ask dd to come up with a meal plan that works for her (as she’s eating pretty much the same thing every day but will eat more variety when out) and a plan of how they can fit in all the things she wants to see. She’s wanting to pack a ton of stuff in with no thought of resting or eating. He’s intending on staying in an Airbnb so there will be a kitchen and taking the car so can make emergency trips to carrefour for cheddar and pink lady apples if all else fails. The ED coach said that will give him an opportunity to get a glimpse of how bad it is for me and will be a good learning curve for the 2 of them. So fingers crossed.

@TempersFuggit
It is great your dd is responding so well and brilliant that you’ve identified the importance of things to aim for. It’s important to keep vigilant in these early days and even beyond. The ED is a sly creature. As your dd is almost an adult, perhaps look into Tabitha Ferrar. She has a website and has published a few books for adults with an ED. She can be a bit controversial as she doesn’t seem to believe in therapy. If you want to pass anything onto your dd, I would suggest reading it first. TF healed herself and the books are packed with good evidence based advice. She has also published a book amongst others called The Fear of Weight gain. Here’s a link to her books. https://www.amazon.co.uk/s?k=Tabitha+Ferrar+eating&i=stripbooks&crid=1DEFC45AZUKBI&sprefix=tabitha+ferrar+eating+%2Cstripbooks%2C75&ref=nb_sb_noss

@Mummyoflittledragon we have camhs and a psychiatrist involved and they all think it's not a psychotic episode but driven by anxiety, too many demands, too many people involved etc. The more there is, the more she withdraws. We have stopped most appointments now as it put too much pressure on her, she has been removed from the PRU and will start in the subsection with only a handful students for 3.5h per day. She eats every day the same and we let her. Hopefully that will give her some space. Oh, and don't get me started on the DH. I am not sure we will survive this as a family unit. There isn't a day when there is fighting which isn't helping. The whole situation is affecting work badly (for both of us - not sure how long either if us can cling on to our roles). I should look into some courses with Jenny Langley I just really struggle with time (or lack of) more than anything.

I am so sorry @Curlyhairedassasin. You are doing an amazing job, advocating for your dd, keeping her eating and managing to somehow work. The fighting is so familiar and you’re all just fried and by the sound of it and all also in fight or flight. Idk how you are even managing to stand up in the morning. One day this will be over and your dd really will look back and realise how much you’ve sacrificed for her. For now, I hope that on reduced hours in a class of about 6 you will all find peace and a little respite.

As for the courses with Jenny. She’s not doing any workshops until April next year as she is working elsewhere, perhaps on some research. However, the core 5 part course that she runs and wrote are also run by her colleagues. I have done the 5 part workshop both with Jenny and with Catherine O’Dea Hughes. Catherine doesn’t cover as much material as Jenny. Her courses are more practical, which when you’re as frazzled and time poor may suit you just fine as they get you to work on the language and tools more during the actual workshop. I’ve looked up the courses available next year on the trust and these are now published. https://www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers. The first one with Catherine is at the start of February. It would be useful to familiarise yourself with the book and animal metaphors beforehand. https://www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634

There are a bunch of videos on YouTube based on this approach - the SUCCEED series and they have a part 1 and 2. Part 1 is doing it wrong. Part 2 is doing it right. There may be some useful scenarios. They use the skills from the book and the animal metaphors from the book. I googled the videos. Here’s a link to a few. https://www.youtube.com/results?search_query=Succeed+part+1+new+maudsley Some of them seem to be about eating different foods, which we can’t get our dd’s to do. But it gives a general idea. The family in a restaurant one might be a good one to watch for example to give you an idea if you ever eat out. I am not as direct with dd as with these videos but it will perhaps give you some ideas. Dd is quite sarcastic with all this stuff and straight out affirmations are too much for her to handle. That’s linked to her being potentially autistic with PDA traits. So I have to go softly softly.

thanks @Mummyoflittledragon!

@Curlyhairedassasin i just wanted to say that I have done Jenny Langley’s workshop and she advises taking it at your child’s pace which is what you are doing. She is eating and it doesn’t matter that she eats the same thing every day. Jenny says to think of it as “at the moment”.
The main thing is that you have professionals on board who are monitoring her so you can share the burden of keeping her safe.
The other big bit of advice I can think to share with you is to use positive affirmations and try to find things that give her enjoyment in the hope of expanding all the good things in her life and shrinking the ED. Easier said than done but it seems to be key. I think the idea is that we keep chipping away at it until they are ready. So many professionals have told me that they need to find something that they want more than the ED.
All of the workshops are based on the book “skills based caring for a loved one with an eating disorder” by Janet Treasure et al so you could just buy that and dip in and out of it when you have time, which I know is limited. Your DH should read it too. Thinking of you

@Mummyoflittledragon thank you, we didn't allow her to go to her running club this morning which she was upset about but seemed to understand so I think that was enough to shake her up a bit. I have allowed her to her nans we took all the snacks with her and agreement was she would answer the phone when we rang so we can nudge her at the snack time. Hoping its a blip and ensuring we keep a closer eye. She is 13 very soon and hoping she can have a nice birthday this year.
@Curlyhairedassasin sorry to hear you are having such a hard time and it's ongoing for you. It's so tough. My DD also ate the same foods everyday for the first few months and ate at the same times. It's just the last three months she has really turned a huge corner and been trying loads of things it just seemed once she took the first step of fearfood it opened other opportunities up. I know we've had it a lot easier than most on this thread. We are about 18months in now and thankfully have had great support from camhs, we can see the light now. I can't imagine having to fight for help and take your child to a+e it's really heartbreaking to hear these stories. I hope things get better for your child.

Sorry you are having such a hard time @Curlyhairedassasin I hope things start to improve for you.

We are just plodding on with the same old stuff. DS was basically forced to have a blood test which showed low calcium so he’s back taking his Forceval now. His intake isn’t too bad at the moment and he’s gained a little weight. He had his birthday, I kept it really low key and he enjoyed his present, it was good to see him smile. He felt he couldn’t eat any cake as he’d already reached his limit that day but he did eat a slice the next day. I’m hoping the weight gain will continue even if it’s at a very slow pace.

My youngest child got discharged from CAMHS this week which I’m not pleased about. He’s really struggling with emotional regulation and occasionally self harms but as this is due to his autism and not a MH concern there is apparently no need for CAMHS involvement. It really feels like there is no support for autistic people. Which makes me angry.

Anyway that’s my rant over, I hope everyone is as well as they can be

Hello,
Have watched this thread closely but never joined in.
I have a DD who is very overweight and struggles with emotional eating and bulimia and I find it very difficult to get support from professionals.
She was referred to the ED team twice. They acknowledged she is struggling but didn't take her on.
I am looking at the Charlie Waller website but it isn't clear whether they support much on bulimia.
Does anyone know or is the book able to help?

In my experience, the instructor will cater for whoever attends the course. Jenny Langley said she would also accept people on the course caring for loved ones, who don’t have an eating disorder as the techniques can be applied for anyone suffering from mental illness. Technically my dd doesn’t have an ED as she was never diagnosed and diagnosis is not a threshold.

As for the book I am sure there is useful stuff in it for you. I read it from a pov of a parent with an emaciated child. But the book, like the courses, are for people caring for loved ones with an eating disorder. Bulimia is an ED.

@Mummyoflittledragon
Thank you. This is helpful..I will get the book and go from there.
Xx

@RainyDayCoffee the book is for all eating disorders. The skills are the same. The group therapy that my DD used to do had people with AN, bulimia and binge eating disorder. They try to find out what is behind the ED. And they all had dieticians and meal plans to follow. It’s such a shame that CAMHS cannot offer therapy to everyone who needs it. Good luck Rainy. It’s so hard to watch your child struggle.

@Shanghai101
Thank you for the kind words.
Feeling very lonely today and helpless as we have had a very few difficult days with DD and her binge.
It's very hard to bring this up for fear of body shaming.
She took 4 overdoses over her body image last year so I am completely paranoid every time I find a huge haul of wrappers and bottles in her room.
She has a dietician I am paying for privately but we are not at the point she can make changes suggested.
Was the group you are referring to on the NHS ED services?

Xx

Unfortunately not NHS group therapy Rainy as by the time my DD was low weight enough to get intensive support we had already reached out to a private clinic. We were under the impression by then that the NHS model wouldn’t work for her and that she needed a slower, gentler approach. However, NHS workshops that I have attended have all talked about the same group therapy because whilst it is about food, it’s not really. It took my daughter a long time to appreciate the benefits of group therapy. I know it is available for day patients and inpatients but not sure about outpatients.

I have attended quite a few workshops now and I gather that for all ED’s the key is to take the focus off the ED. So as long as they are medically stable, try not to talk too much about the ED. They all talk about the blue balloon/red balloon. The blue balloon is the good things in life and the red balloon is the ED. As the ED gets stronger the blue balloon shrinks and their world becomes very small. As carers we should try to inflate the blue balloon and in so doing the theory is that the red balloon shrinks.
The Janet Treasure book explains this in great detail. My daughter has a restrictive eating disorder so I don’t know much about binge eating but from what I gather the principles are the same and all the workshops I have attended have had people caring for a child with binge eating disorder. It is a coping mechanism for them and very difficult for them to give up so the advice is to take baby steps and to validate their feelings, e.g. thank you for telling me this.
This must be very hard for you
You are very brave
I know you didn’t choose this illness etc

And if they’re doing well, tell them how proud you are of them/how well they’re doing without having to be asked. It’s really important for them to see that we notice when things are going well.

For binge eating, they also give tips on not facilitating the illness i.e. not cleaning up afterwards but letting them do it themselves and setting boundaries around not raiding the fridge so there’s nothing for siblings going to school for example.

I agree that you can’t ever mention her weight as it will be seen as body shaming - we always talk now in terms of being strong and able to do things.

I fear Rainy that it is like anorexia and will be a long slow road to recovery for most. But try to remember that it doesn’t stay as bad as this forever and that you can get back to a relatively normal life whilst still recovering from the illness.

We found that beading and art helped after meals. Playing board games might help too - basically anything that takes her mind off the thoughts or at least quietens them.

Look after yourself too. As careers, we have to manage our own expectations as we are often too impatient for change.

I hope this is helpful. It is an awful time of year to be trying to help somebody with an eating disorder so if I were in your shoes, and as long as she is medically safe, I would read the book over Christmas and try to digest it. It’s a lot of skills to take on especially motivational language!! it’s an unnatural way to parent if you ask me but it works!!!

And I do believe 100% that everybody can recover from an eating disorder