Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

Proseccoismyfriend,
For DD cbt-E was the only treatment and worked quite well. But as far as I remember the first 4 weeks are "just trying to persuade" DC to wanting to improve.
For DD CBT-E was about a year with couple of follow up visits.
For those that are at a "normal" weight" it's supposed to be shorter.
(20 Vs 40 sessions).
I think DD got "tasks" of eg trying 3 new things for 1 week.
I think your DD is a lot younger, so not sure how CBT works for younger children

👋 Bit of a stalker; posted on diagnosis then left for a bit. Have caught up on the last few pages. Some of you have it so tough; really hard to read. Thank you for sharing.

So our story is a bit different I think? We are not looking at wfh, and don’t have target weights. The ED nurse has been very clear that this isn’t helpful, and also, that it’s hard to say as my dd is off the charts tall, so their data is irrelevant to her. I have looked it up, and based on NHS BMI her current weight would place her at 110% but she is still in refeed. To look at her, she now looks good; she is probably a dress size 8-10 and places which looked horribly thin (wrists, collarbone area, thighs) have filled in. I can understand why she doesn’t want to put anymore weight on. Especially as her friends are much shorter than her so look a lot thinner (she is perfect in proportion, but her legs are probably 10-12 inches longer, so proportionally bigger, which she finds really difficult to manage - on her own she looks amazing, in a group, I can see why she feels bigger, especially with dance friends who are toned - she has lost this. I now spend all my time looking at her friends shapes etc - anyone else find this? It’s exhausting)

She was weighed on Friday and lost 2 kilos which they have described as a big drop. Previously, she put on 4 kilos (we have fortnightly weigh ins) so I was afraid this would happen. I don’t know how she has done it; she has obediently followed the meal plan with 3 snacks, 3 meals, pint of milk. So I’m guessing she is either purging (we do watch her after meals) or spending all the time in her room moving. She very quickly said she doesn’t know how it happened. Previously she hasn’t been exercising - she has admitted this was because she was too weak. In the last fortnight she has started to be more animated, so I wonder if she’s found the energy to start exercising in her room?

We feel we’re working towards a hidden goal, and I am starting to get worried about what the clinic have in mind as an end to refeeding. I worry that if it’s really high, this will set my dd back, as she will just refuse to meet it.

I also need to get her new clothes as hers are falling off her, but don’t want to run the risk of buying things which might end up being too small in a months time, further setting her back. Any advice???

@Dinnerisburnt if you’re still after advice… I have known some teen models, and also adult models. The children had eating disorders, and said that ‘everyone’ did. The adults that I know haven’t admitted to ED, but from my observations, definitely have disordered eating. My sis is 6’ and looked ‘normal’ until she modelled. As a model she refused breakfast and lunch and just had a light dinner. She also has a weakness for chocolate so ate that. She doesn’t look stick thin, just super slim with muscles. If you didn’t spend significant time with her you would think her figure was achievable with healthy eating and gym time. It absolutely isn’t.

The modelling world is all about she’s beautiful, you’re beautiful, Bella Bella Bella, but also - she’s too skinny, her hips are too big, etc etc. The castings are brutal, and every time you don’t get a job, it is specifically about the way you look. This is my understanding, but might be out of date; the people I know were in the industry 20 yrs ago. Around 10 yrs ago a friend was featured in vogue as a curvy model. She was dropped only a few months later as she lost muscle tone and didn’t make enough progress in the gym. Too curvy to be a curvy model... Also - you might find that the weight she needs to be as a model will be in stark contrast to the weight the ED clinic want her to be. Models aren’t healthy weights.

@Worriedmummmm could she be cheating at the weigh-ins? Could that account for the big gain and then the rapid loss? They can be very devious!!
we have been given the same advice about target weights not being helpful.

That’s what I was expecting @Worriedmummmm

Anyway we went to the agency, haven’t heard back from them so hopefully it won’t come to any decision!

Have you looked at Brandy Melville for clothes? In particular bottoms, they are very long…one size fits all, but small if you know what I mean. DD is a size 4 and they drown her but are ok on length.

DD buggers around with her weigh ins….water loads, keeps her phone in her pocket etc if she can get away with it. Her nurse makes me take her to the toilet first before she is weighed and she has to leave her phone with me.

DD isn’t allowed to go to her room or bathroom for half an hour after eating, the unit she was at put that in place and we have stuck to it at home. Might be worth having some rules at home if you don’t already x

Hello really sorry if this has already been discussed, but my daughter has come home from uni for the summer and it's become clear she has anorexia. Her doctor and therapist have recommended she doesn't go back in October. I can't seem to find any contact at the uni I can discuss this with, and she's too frail and anxious to make enquiries herself right now. Any advice on next steps would be brilliant, Tia.

Help, I cannot see the wood for the trees and need some practical suggestions as to what to ask for/demand/change:

DD is still seeing and hearing things, we changed the meds a bit (less Sertraline, more Olanzapine) a week ago but so far nada. DD is now school refusing missed 4 days since last week). I am in a complete panic what to do of she doesn't return in Sept (not least as I need my job - it's already only part time). SH is continuing (cuts to legs), she says she is suicidal and asked me on Thurs last week to take her to hospital as she felt scared she would go ahead. We only saw a liaison worker after waiting until almost midnight to tell us that she can only take notes and that she would let camhs know who would contact us (4 days later with a child who described in graphic detail how she would commit suicide in a&e and no contact from camhs). We havre only seen the ED team since. Weight dropped again but if we try to increase the plan, she just gets violent and hysterical (keep in mind she is suicidal). She has been accepted onto the Asd pathway but we are looking at 5-6 years until she will get an assessment. I think a lot of her issues are rooted in her being ND. She also is totally socially isolated at school now and has no friends left to spend time with (I think this is one reason for the school refusal). She is actually desperate for friends. Just so much going on. ED team chat to her and give meds, Camhs gave her breathing exercises, a&e send us away. I am completing overwhelmed. Any practical suggestions (and keep in mind, DD1 has complex SN which makes every double hard). I am melting down (DH checked out and is planning a long solo holiday over the summer to get a break)

Thank you @Slowlyimproving we had another session today and the challenge is eating out so we've planned some more restaurants and will just keep trying.

@Nicolabodeux welcome, but sorry you find yourself here. I'm wondering if you need an urgent gp appointment for obs and a referral but due to your dd being older I'm not sure on adult services. Someone with more experience than me will no doubt have some good suggestions/advice. Do you know how much your daughter has been restricting?

@Curlyhairedassasin I really feel for you. Are you able to go back to the psychiatrist as the medication levels don't seem right at all. I'm guessing (maybe wrong) but the distress with the increase is the ed fighting back. Your daughter must be so confused. I may of asked before but have you tried the supplements? One shot is 300cal we told my son they were to help his heart as he knew his body was struggling so he happily drank it, you can peel the label off too so it's just a plan white bottle. I know the clinic don't like the lies but they aren't in the battle everyday and the more you get in her the better it'll be.

@Proseccoismyfriend we only just changed them a week ago
Review in a few weeks but since DD has been on them for a while psych doesn't think it's the meds. I really don't think meds work very well for DD. DD wont touch supplements either. I was full of bruises and bitemarks a year ago and had a few times Ensure in my face and hair. She won't touch it. She won't drink anything unlabeled either :(

It's so so incredibly hard, I can't believe there is no one in your corner. Would an admission to get refeeding be an option? I maybe wrong but I don't feel you can manage all of this, the voices and visual disturbances alone are a major challenge and the ed makes it even more difficult. Did the psychiatrist say if it may take time when the meds are adjusted? We were told if ds wasn't following the meal plan it was admission and without the supplements it would have been a feeding tube.

Hi. Sorry to hear about your daughter:s situation. She should have a personal tutor, whose email address you can find on the uni website. They should be able to signpost you/her to the right source of help.

her WFH is 88-89. she had been hovering around this. They wait round here until it's critical. Our admission last year was to the HDU as she was so unwell. And it's only a general paed ward anyways where I have to be all day to provide meal support as there is no staff. It nearly broke me last year as I have DD1 who needs 24/7 care too (autism/learning difficulties). DH and I are not getting on at all so he pulled out of all support. It's just me now (plus working 5 days a week). it's too much. I just don't know how to cope anymore. Psych doesn't think it's the meds. She recons is brought on by extreme stress and anxiety (as does our camhs worker). but we are left more or less alone in dealing with it.

Thanks @Proseccoismyfriend she's having blood tests and ECG later this week then I will push for next steps referral-wise. She's been restricting to less than 1000 cals, mostly vegetable and a bit of fruit, and exercising for more than two hours a day.

Nicolabodeux
One thing is that some universities will allow to "interrupt" a year. They keep a place for her and she would still be a student.
Dc2 did this but not too sure how she managed it. I think she contacted her personal tutor.Fairly strict criteria as in you have to be ill or have another good reason.

Dç3 with recovering ED and who is planning to start uni in september, has been in contact with wellbeing team at her future uni. Together they are planning some arrangements to get her some support. The email details are on the website of the uni.

Curly I'm just speechless. Have nothing to suggest.

@Nicolabodeux my DD was forced to take an interruption last year due to severe AN. She contacted the faculty office and made an appointment for me to go in to see them, although I think it could easily have been done over the phone. I explained that she would be in treatment for the foreseeable future. They asked that she email somebody but I have forgotten who now and they also gave her the contact email of a careers advice person. She remained a student there and kept her student ID and could have used facilities if she wished. It was a pretty straightforward process and, sadly, they seemed all too familiar with our situation.
Remember also to contact student finance England regarding tuition and maintenance. Good luck to your.DD. I hope you can find effective treatment as the year goes by very quickly

@Curlyhairedassasin it’s really hard to know what to suggest but I couldn’t just read your post and not reply. I’m so sorry that it is so hard for you. If severe anxiety is making her symptoms worse, as is likely if she has autism, then it probably is best to let her stay home from school for a while. She may be in burnout. I know this makes things very difficult for you work wise but hopefully with the removal of all the pressure that goes with school and friendships, or lack thereof, the symptoms will improve and she will be in a better place to start back at school in September.
Have you contacted social services? Might they be able to provide some respite or home help for you?
Could you contact your GP/MP and see if the ASD referral can be expedited? I imagine there are very few families whose needs are greater than yours on the waiting list so it must be possible to get you DD tested sooner rather than later. My DD got a late diagnosis of ASD and I really regret not having had it sooner as you have to parent ND children differently to NTs and the trauma that happens to them while they are undiagnosed and trying to navigate a home/school/social system that they don’t understand is heartbreaking.
I don’t know how you are expected to do this alone. Do you have family/good friends nearby who can help you?

Curly did you look into getting disability benefits for dd2?

Personally (and I appreciate it's easy for me to say this) I'd be looking at separating from your useless husband. You're already doing everything on your own anyway and I think financially you'd be better off as a single parent getting benefits for two disabled kids and not working.

The situation you're currently in is impossible 🤷‍♀️

The lack of support you're getting from Camhs is shocking and negligent.

Are they checking your dds obs and bloods?

Does your older dd go to a specialist school? Are they aware of how bad things are atm?

I feel like Camhs saying your anxiety is making things worse is a massive cop out tbh.

I would start reading up on refeeding and family based treatment even though your dd is a bit older the principles of the treatment would still be useful.

Does your dd accept she is unwell?

The exercise needs to stop and you need to explain to her that at the moment she's too unwell to make any decisions about what she needs to eat so for now you'll make those decisions for her.

She needs 3 meals and 3 snacks a day, the more fats and calorie rich the food the better.

I'd also point in her the direction of some good self help books/podcasts my minds gone blank but @myrtleWilson or @NanFlanders might remember some of the good ones (?Hope Virgo) Tabitha Farrah is the other one I think.

Eva Musby is useful for ways to help with what to say when they refuse food but she is aiming at much younger kids.

@CurlyhairedassasinI haven't any advice to offer, but just wanted to offer sympathy. You are doing amazingly to juggle all this and I am shocked at how little support you are getting.

@Nicolabodeux As @Girliefriendlikespuppies says, if your DD accepts she is ill and wants to recover, Tabitha Farrar is very good. She also offers online coaching (1-2) sessions for about £100 iirc. My DD has found her books (Fear of weight gain, and Rehabilitate, Rewire and Recover) very helpful. She also likes Cara Lisette's workbook.

If she is too poorly to realise she is ill though - as mine was for a long time - do whatever you can to get 3 meals and 3 snacks into her, as her brain will be too malnourished to think straight. High cal nutritionally compete drinks can be helpful - Fortisip, Ensure or Boost are some of the best known and you can get them on prescription. Use any leverage you have - desire to get back into uni?

It's really hard when they are adults, but if she will accept your help. Go on the Beat website - they do some excellent Zoom seminars and online courses on techniques for supporting anorexic family members.

Don't be afraid to make a nuisance of yourself - regular obs at the doctor, A&E if she faints. I don't mean to scare you, but they can go downhill very quickly. Sorry you find yourself here. Hang on in there and DM if you ever want to talk.

@Nicolabodeux Jenny Langley has excellent workshops for parents/carers. Sign up via the Charlie Weller Trust website. It’s also worth getting a copy of Skills Based Caring for a Loved One with an Eating Disorder by Janet Treasure et al. BEAT, Jenny Langley and ED units base their carer workshops on this book

We get middle rate care for DD2. But it's not that much considering how much I spend on certain safe foods, petrol, parking and time off work. And I only work part time only.

DD1 is at special school and they are aware. They have helped me to get (after years of asking) respite care pushed through. It's still not finalised but once done, I will get 3h every fortnight. It's not massive but better than nothing.

We haven't had bloods or obs done since last year.

Everybody blames all her hallucinations etc on anxiety and that's it. I just don't know where else to go and get help. I am completely lost. I just don't know what to do. I am so worried about her. She keeps talking about taking her life (incl the method) and I am so worried, one way she will go ahead.

Hi looking for advice.
I have a 16 year old daughter with an eating disorder. At the moment she doesn’t want to drink very much, is this common? She has been transferred from CAMHS to Adult Services, we are waiting on first appointment. It’s really hard as it’s her birthday soon and she doesn’t want to go out for dinner, always tired and wants to be in her bed as no energy. Any advice please 😓

Why is she being transferred to adult services? At 16 she should still be under the children's teams.

How much is she eating? Yes it's common to restrict fluid as well as food, if she seems to be struggling more (no energy etc) I'd take her to a&e to get checked over. She needs obs, bloods, ecg etc to check her heart and kidneys are okay.

@Curlyhairedassasin
At the medication review with the psychiatrist did the psychiatrist not do additional screening to look for anything else that might be going on.
I cannot fathom how you can be left so unsupported by your team particularly as your DD was hospitalised last year and with everything else you have going on.
Please ring BEAT or contact Jenny Langley via the Charlie Weller trust for expert advice. Jenny is a mum whose son had AN so she understands from a parent’s perspective. She has worked in this field for 20 years so I think she will be able to give good advice and help you find a way forward. Message me directly if you need help with this.

@Ilovekoalas this is exactly how it was for our DD. And because the CAMHS waiting list was so long she was transferred to the adult waiting list. Unfortunately, we lost a lot of time getting help whilst we waited and as a result the eating disorder became more ingrained. Now that she is slowly recovering she says she regrets not having had help sooner as the longer you live with an eating disorder the harder it is to shift it.
if I had my time over, I would educate myself first and foremost. BEAT, FEAST, Eva Musby and the Charlie Weller trust all have great resources. Get a copy of Skills based caring for a loved one with an eating disorder by Janet Treasure. Also worth watching a TedTalk by Dr Laura Hill. She describes the noise/thoughts that people with EDs have every time they are presented with food.
Then (and I don’t know how you do this without a team) you need to establish eating again so it becomes normalised. But if she has been restricting this needs to be done under medical supervision due to the risk of refeeding syndrome.
She needs short term goals and incentives for motivation. It is a long hard journey but slowly you see your daughter come back. Distraction techniques are important, particularly after meals when the thoughts are loudest

@Curlyhairedassasin
This won't be welcome advice but I second taking her out school. Or at least take her out now for summer and monitor closely if things are any better over the summer holiday when she doesn't have that pressure. If she's struggling with asd at school, her need for control over food will be definitely be a major unhealthy coping mechanism.
Does she understand about asd? And that she might be autistic?