Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

I think of it as a 'consequences' way, mine responds well to me refusing to take her anywhere before eating a proper meal off the plan, for example. But she would just leave the house and go anyway, so encouraging cooperation and collaboration has been a necessity. There isn't another way for us (and also over 18 unless they are sectioned).

Also something I wanted to ask opinions on.

DD is very accepting of the fact she has an ED from the beginning, and it was her that came to me to begin with and told me about the restricting, the complicated feelings and that she was scared I wasn't going to take it seriously enough.

she also seems to be able to identify where this came from (complicated feelings of jealously towards AN niece and a desire to get the same attention and also to be skinnier than her).

She has expressed a desire to get better and to enjoy food again (although there are definitely plenty of times where she doesn't care what she loses from her life in her refusal to eat).

She also has expectation of things in the future that she's looking forward to still happening eg Christmas plans

Is this all a positive sign for her recovery? The last week had been so awful I'm trying to hold onto any signs of hope!

LittlePickleHead that's all so encouraging. I'm glad she's managed to eat more over the weekend. Buckets of compassion and understanding is what gets through to my dd. I found it hard at first as was scared and angry but after reading Eva Musby I found it easier to treat her with patience and kindness and empathise when she was really struggling. I can't say I don't react badly at times but I'm quick now to apologise and move on.

In terms of looking to the future this is definitely encouraging something to build on. We chat a lot about Christmas and went out to buy an advent calendar and actually ended up with two. We discussed what date we'll get the tree, made a list of presents she wants to buy her friends. And we're tentatively planning a summer holiday next year.

Pinpointing what triggered the ED is helpful and it's great that she's told you about it. It's obviously very difficult that it's your niece. My dd has dysmorphia and says she's jealous of skinny pretty girls. I'm told as the fats get back in her brain the obsession with her looks will diminish. I can see very small improvements (hurrah) but the dysmorphia is still ruling a lot of her life so we've a way to go yet.

Just keep going with the compassion and the fun and really take this weekend as a positive that she does want to recover and does see a future with eating normally. When my dd is having a bad time I refer back to some of our good chats or good times to gently remind her that she doesn't always feel bad.

@SwattyPie I have just started the F.E.A.S.T 30 day course (has anyone else done this?) and am reading this letter - I thought you might find it helpful or reassuring
www.feast-ed.org/letter-from-lm-2012/?mc_cid=5dad070e34&mc_eid=69c0007b32

Thanks @littlepicklehead. We had what almost counts as a conversation today, and I was able to tell her that I knew all the anger and hatred etc were a symptom and I didn't blame her for it in the slightest. It felt good to be heard.

@SwattyPie that's a great message, she will really have heard that (even if as a teenager she can't show it!) I find thinking of it as a mental illness, which it is, and very similar to an addiction, a very helpful way to think because it reminds me that when my daughter was depressed, I was very understanding and non-blaming, and so this should be the same, even when I feel like shouting 'for god's sake, just eat the bloody biscuit' or whatever. It's the counsel of perfection and I don't always succeed, but reframing this in our discussions as a mental health problem, which you absolutely have to get help for as it damages your ability to think and function, has been helpful, for her and me.

I'm starting to get more and more despondent with camhs. We had our appointment today. Her obs are good. She's slowly gaining and hasn't had a drop in 2 months, but but needs to put on more weight (we know). She eats her 3+3 and we are slowly making it better and dd is mentally improving, but the only advice we get is basically 'Eat more' So it's a 1.5 hour round trip every fortnight just to sit there in a bleak room and be told eat more.

I'm grateful for the appointments but it feels like a waste of time to be honest until dd is deemed weight restored enough to be allowed counselling. Dd doesn't like going (and probably senses I dont enjoy it either) so is upset for a couple of days beforehand. I can't stop going because I don't know how she would get good counselling otherwise.

Yep - the conversation came about following an appointment in which she has just been prescribed meds, so really hoping that a change in mental health mood might open the door for a little move towards ED recovery. I'm celebrating my day with a glass of wine and feeling more relaxed (DH will be pleased to hear - poor sod, putting up with us both). Snack is over and my work for the day is done. Pass the bottle....

@Whyisthishappeningtous I agree. I understand the point about weight-restoration increasing cognitive ability, but if no attention is paid to psychological and motivational factors, how will they eat more? Perhaps email CAHMS and say you feel a bit stuck and what's the plan for the future- do you have one particular contact? I also dread weigh-in days, our CAHMS is separate though.

Buteverythingsfine Yes we've had the same lady since the start. She is lovely but even she must get bored of saying the same stuff. We're there for nearly an hour and come out with nothing that's actually helped, apart from dd having her obs done. I do ask for counselling every time. We see the dietitian in between appointments on zoom who, after 20 minutes of waffle, just says 'Try and add a yogurt to lunch'. I know dd is very ill and needs to be checked up on, but with the NHS struggling it seems a waste of money and time doing these appointments when I'm now quite confident with the food side of the issue and we're just going along with it until dd can get some psychological help.

Why I wouldn't hold your breath on getting good counselling out of Camhs tbh (sorry) I didn't find Camhs useful at all for dd. She hated going to any appointments and it tended to set her back for a couple of days. Eventually I used to talk to the psychiatrist (who replaced the nurse we started with!) fortnightly on Teams and dd only went in for obs and weight checks.

As soon as dd neared 100%wfh they wanted to discharge her 😕 she did have some cbt with another Camhs teams which possibly helped a tiny bit.

@Whyisthishappeningtous what's your DD's WFH?

I strongly disagree that there's some magic WFH whereupon a patient's brain is receptive to CBT and counselling. In my experience, my daughter's cognitive function was correlated to intake rather than weight, ditto her period. In other words, she was alert and achieving well when she was getting in 2000 calories and wan when she wasn't, regardless of her weight.

Frankly we'd have been waiting a long time for therapy if it had been weight dependent. It's bonkers - you only have to look at this board to see that the optimum weight varies so much across children. Some need to be 110% others 90%.

We went private and obviously are incredibly fortunate that this was an option for us. There are many orthodoxies of the treatment of anorexia that I question (see above eliminating exercise and making life stop in other ways) and this is one of them. I wonder whether you could just beg/demand/cajole to try to get her some counselling?

My dd has private counselling as well as CAHMS family therapy, it's just her space, can talk about anything not to do with ED as well, so college issues, friends, worries. It's no miracle cure but it's another place to put all these strong emotions and also get ongoing support as her therapist pre-dates the ED. They do not focus on ED in this setting, unless my dd brings it up and it's not CBT but talking therapy.

I agree completely with @Valleyofthedollymix . Expecting teens to change completely without any emotional/CBT/therapy and then start once they are 'better' is quite bizarre IMO. Also techniques like motivational work can work alongside weight restoration, even if full CBT isn't appropriate.

If weight gain alone was the magic bullet, then the hospital stays where they're fed like foie gras geese would work. But they don't, they come out of hospital and relapse. It seems blindingly obvious to me that the food and therapy need to be in tandem.

I remember being given the original diet plan and being waved away and told to get on with it (MyrtleWilson has a brilliant analogy for this) but they won't eat a small amount let alone custard puddings at every meal.

Bizarre is absolutely the right word.

I think the difficulty is that for some kids weight gain is all they need. I think there's been a few parents on here and the fb group who have found that to be the case.

The quality and availability of good therapy for teens with EDs varies massively. My dd saw an awful counsellor at her school who completely undermined me and agreed with dd that I'm the problem for being in control of her food (the alternative being her starving herself was preferable I suppose 🙄🤦‍♀️.)

In our case weight gain has helped in lots of ways, dd is happier, has no fear foods, eats 2500 calories plus a day and day to day functions well. However we are stuck in that some ED behaviours remain (leaving food, having to walk every day, not eating above the 3 plus 3.) Whether proper therapy would help is difficult to know as I feel some of these thoughts and behaviours are linked to dd probably being autistic and resisting change.

Like everything I suppose the treatment paths and road to recovery have to be individualised and what works for one won't necessarily work for another.

I agree everyone's journey is different. In our case food and weight and time at that weight was all that was needed. That sounds easy, it wasn't.
But body dysmorphia was not our issue. Over exercising and obsession with fitness was.
We used carrot (eat and you can train) rather than stick (although we did threaten to remove exercise).. and it was key to have a consistency of message (that was weight=strength= a body that can do what you need it to do) across all professionals
She initially did not believe the message as ED was telling her different.
She does now.
DD hated CAMHS, would not countenance therapy, was dragged reluctantly through a module on Perfectionism which was most helpful for me, and never wanted to talk about her feelings or issues.
Now she just wants to forget she was ever ill.
Apparently with younger patients (DD was just 13 when diagnosed) its quite common to 'forget' how ill they were.
I'll never forget though....

We have found that exposing DD to different meals and situations (restaurants, fast food) helped - cutting neuro pathways in her brain time and time again, relearning how and what to eat - not force feeding but normalisation. I liken it to a fear of flying, no matter how much hypnotherapy or counselling you have - taking a few flights is how to overcome that fear.

Each sufferer is different, my DD is so stubborn. We engaged a private therapist who said everything was going well, but as it’s confidential and DD hates talking about AN and anxiety to us who knows - with holidays and breaks DD has not had a session for a month and neither has she asked about them, it feels as though she was doing it just because we arranged it. We are trying to return to normal, DD is weight restored for five months and shows no depression, her anxiety is only around school (yr 11).

Initially we thought therapy would be the answer - the therapists at CAMH seemed inexperienced and lacking in ED knowledge and also given that the therapy is delivered in the space the sufferer hates - hospital, then I would need to be convinced. Motivation and living a life have been the key for DD and to be fair our ED nurse would not ‘unlock’ DD’s activities until she gained and maintained.

@LittlePickleHead just reflecting back on your comments about your DD & her thinking about Christmas etc. One approach we tried and saw on a YT (Ro recovering) was having a 'future board' next to where you eat. When DD was in early days of thinking about recovery she was motivated by the idea of a holiday in Greece with her friends - so we made a Greek island collage for her to have next to her plate when she ate - a visual reminder of her early motivation for recovery.

A similar exercise we did - again you have to be confident in timings was to get DD to map out on a piece of paper all the things that would demonstrate she was happy - so DD wrote her name in the middle and then populated mind map style with things that made her happy or she could do when happiest (we did a similar one for 'strong/healthy' (I forget the exact non triggering word we used!). And we'd revisit the pages every now and then for her to 'tick off' what she was achieving in terms of happiness/strength etc - a visual aide memoir for her to see the progress she was making month by month.

We're massively upping calorie content here to make sure DD is in positive all the time as she trains for this blooming marathon - it is going to be quite the challenge. The last week its been clear she's been in deficit and has had those horrible painful hunger pangs at 3 in the morning. Fingers crossed we can get ahead of ourselves. It is a challenge isn't - I firmly believe we did the right thing in supporting her to exercise at the right point in her recovery but it is a delicate balance to manage

Oh! I forgot to add - our big success this week....

DD and I batch cooked 15 meals ( 5 portions of 3 meals) for her this week on Sunday afternoon. They're in the freezer and it takes a load of stress out of our week as DD had reverted back to "component dinners" - so chicken with sweet potato wedges and green beans - which for us can lead to more restriction on choice if not quantity. The meals she chose were chicken satay curry, cauliflower pasta Alfredo and a tex Mex chilli - so all 'mixed up together meals' which was definitely a fear method when she was very ill. It also means we're all much more confident that she'll eat well if we're out of the house/out work etc

We used this website beatthebudget.com which was great as it does give nutritional info per portion (and how to increase protein or calories etc) which is handy for us (including DD) to make sure each meal is over our 'floor' on calories - and most of the recipes are do-able under an hour so feasible to prep in an afternoon and manageable for a 19yr old to do!

I’ve spent my sleepless night reading through the thread and am in awe of all of you surviving this journey.

We had our initial assessment by the CAMHS Ed team last Wednesday who diagnosed anorexia, said she was very ill and sent us home with a meal plan and an appointment for today.

By Friday evening I had to bring her to A&E where they admitted her and where we still are. Consultant Psychiatrist said she’ ll be home in the next few days.

Haven’t got into the details as Dd escaped from the ward yesterday and most of the day was horrendous. I have gathered that we’ll be sent with a supply of Ensure and that we need to hire a wheelchair. Dd currently can’t stand for more than about a minute and gets dizzy even when seated. She’ll have to be on chair rest with minimal physical activity.

No point to this other than to get it out of my head with people who understand x

@magnummum how could they let her escape?! If you're not convinced she's ready for discharge then kick up a fuss. If standing is an issue then say you're concerned about her safety. I hope things improve for you soon.
Re camhs- dd was never even offered support from them. We were told she was too poorly (never mind counselling etc). Every time she was weighed I'd ask. Then we were told that the waiting list was so long she would be into adult services before she got to the top of the list. We were fortunate that we had health insurance so got some private counselling which I do think helped. But like lotts, DDs issues were all around exercise rather than her body.

@magnummum so sorry that sounds v tough. I agree with NCTDN that she doesn't sound ready for release.
What help are they going ro give you at home? I know @myrtleWilson had to fight for better at home support to prevent boomerbaning in and out-of hospital. I am sure she will be along to advise.
We didn't ever get to hospital (excepting for the undiagnosed heart defect scare) so I am.not best placed to advise... however sometimes a desire to stay out of hospital can be an incentive to begin to turn things round. Please feel free to unload on here. We all understand.

And btw at our lowest few months I was often begging to go to hospital but it was height of covid and so no one was keen....

She absolutely does not sound anywhere near ready or safe or even medically stable to be discharged and I would be refusing to take her home. Tell them you do not feel that it's a safe discharge, ask for a referral to safeguarding and insist a mental health assessment has been completed.

Sending her home on ensures when she is dizzy on sitting is absolutely outrageous and they are setting you all up to fail which could have dire consequences for your dd. I would want her to be eating 3 plus 3, gaining weight and the risk of absconding be within a manageable threshold before they even consider discharging her.

Are you on the fb group? There's lots of experienced parents on there that can advice and support with what to do.

I'm so sorry you're going through this, you must be completely exhausted and emotionally drained 😥