Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

@NCTDN no not residential, 3 days a week (6 hours a day) intensive therapy. I have all my fingers and toes crossed!

@DarkBlueEyes I am in your area and with the same CAMH’s team as you (Epsom). I don’t know if you saw my posts saying that the other day? DD is seeing a private therapist in Esher and I would recommend her and am happy to give you her details. I’m not sure if she has any space currently though. This is just therapy mind. Let me know and I can PM you.

I guess you just have to carry on with the 3 + 3 without CAMH’s (they’re close to useless anyway). At 85% wfh your DD has no choice but to continue to gain weight. You need to go back to the beginning. Be firm and don’t negotiate. You know what she needs to get better. Use whatever leverage you can to get her back eating again. She needs to eat everything you put in front of her. Remind me, how old is your DD again?

DarkBlueEyes you’re not rubbish! This is a tough time and you have a lot on your shoulders and people make mistakes. Don’t be so hard on yourself. Have a very unmumsnetty hug!

Also sending well wishes to @Lunificent and @NelleBee for your tough evenings last night. Sorry your having such a time of it!

Dark you're not rubbish, be kind to yourself. Personally I would contact Camhs and refuse to be discharged, explain what happened and that you're dd is still very unwell. I have to write every appointment down in two places, so I write it on the daily calendar that's in the kitchen and I check it every day and I also write it in my work diary. I'm hopeless with technology and wouldn't trust my phone anyway! Are you weighing at home?

I had an appointment with the psychiatrist today, more of the same really, she's happy with progress and said dd just needs to keep going. She said it sounds like dd will be the someone where the behaviours will change but the thought processes will take a while to catch up which sounds about right.

Dd survived the sleepover, said she had a good time. Had 2 croissants for breakfast and went into town with her friend today and had a subway for lunch.

It's progress, snail like but progress nonetheless 😁

@DarkBlueEyes you're just human. I have turned up to the wrong clinic before now (24 miles difference!). There's just so much to hold down.

Having said that:

1. 3+3 is the only way out of this fix and you know that now, so if CAMHS were making you feel bad, it's not the worst thing to be out of it.
2. 85% WFH is equivalent to 42.5 centile BMI. That's a huge achievement and it's the level at which DD1 was told she could go back to school full time (but no PE).
3. Discharge doesn't mean you can't be re-referred.

One of my annoyances is the way CAMHS send out appointments without even considering if we might have other commitments.

DD1 is on day 3 of her period and is starting to eat again. It seems to be the pattern that she feels ill about 3 days before it starts and begins to refuse food. Days 1 and 2 of her period, she barely ate. I think I'm just going to have to accept that it's how she deals with it and try to compensate beforehand next month.

Thank you all for being so lovely, and @Rollergirl11 really appreciated the hug! Are you seeing someone with the initials CC? If so I have been in touch and they are full but willing to have a chat with me to start so that is a good thing, at least if I'm on the waiting list by the time we get there DD might be ready for therapy. Who knows. This person does seem to be extremely highly recommended.

I don't think I can face this care coordinator at CAMHS any more @allGirliefriendlikespuppies I just feel so stupid and inadequate in her presence - I'm sure she doesn't mean it but in that parent/adult/child dynamic she's the parent and I'm falling into the child role even as I can see it happening. It's not as if I'm getting anything out of it really.

@lougle isn't it funny how periods can impact so severely. DD hasn't even started hers yet and the day she does (if ever) I will be celebrating!

I feel I am just going to have to keep on keeping on. Was it Churchill who said "when you are walking through the middle of hell, just keep going?" what alternative do any of us have?

I feel now that the support I have already received on here is worth so much more. thank you all.

Hi all. Not,been on in a while as covid hit me hard but starting to feel human again,
So sorry that all you newbies needed to find us, but hope we can help.
I will come back another time to give my input if I think I can add anything to the excellent advice you have already had but I needed to say this….
Today DD ate out 3 TIMES! She had a crepe in a cafe for morning snack, a plate of pasta at ZiZis for lunch (and not the under 600kcal one!), and a sorbet and cone for afternoon snack at another cafe.
OMG it felt normal. We haven’t eaten out as a family since August last year. I could cry with relief.
We go away to the Lakes in our caravan on Sat and I might get a day or two off cooking (if we can find anywhere to eat!).

@Lottsbiffandsmudge thats great eating & out in public too! Well Done!! I'm glad you are feeling better.

@DarkBlueEyes I'm sorry the CAMHS coordinator is making you feel inadequate. Remember they are not there at home, they are just going off their script and procedures and not everyone is the same. Whatever you are doing is the best you can do and you should be proud of that.

It's a very very difficult road we are all traveling as carers and none of us get everything 'right', if there even is such a thing. Keep your head up high, stay strong and advocate for what you and your child need, and be ok with this process taking a-long-time, its not a sprint it's a marathon.

@DarkBlueEyes no we are not seeing that person. Hope your chat with them goes well.

@Lougle sorry to hear your DD is struggling with her periods. How is she doing maintaining otherwise?

Girlfriend and Lotts wow, both of your DD’s sound like they’re doing really well with the ordering food OUT!!! I cannot wait until we are able to do that! Actually, it needs to come pretty soon as we are off to Devon next Friday and I’ll be damned if I’m going to spend the entire week cooking things for DD. She’s going to have to bite the bullet!

DD actually had a sleepover at a friends last night but she went late after her therapy session so she didn’t actually eat dinner there. She’s having breakfast there though and perhaps lunch depending on how long she stays.

@Rollergirl11 she's doing well, otherwise. I think we need to get her on the pill because her periods are so heavy and painful for her

Bit of time tonight whilst I wait for my washing cycle to finish…I lead such a glamorous life!
@DarkBlueEyes I hope you don’t mind me adding my bit in? By way of background my DD was 13 when she started getting ill in the first lockdown. Over exercising (which we kind of encouraged as she is an elite footballer and was missing her sport so much we thought it would help….doh) and then restricting food from about Sept after some unhelpful peer presssure once she was back at school.
Any way to cut a long story short (which includes my own denial and not seeing her weight loss along with a tortuous referral process) she was diagnosed with AN and exercise compulsion on 17 Dec and reached her lowest weight at 77% wfh on `Xmas eve.
It’s been a long and difficult road with many many ups and downs but she is now weight restored and back to sport and in a much better place. Still some way to go to be a free eater and totally free but I am not sure as a sportswoman that she will ever let go entirely of her diet and exercise as it is all so integral to her aims and aspirations.
I don’t know your daughter’s full story but she is a similar age to my DD and NT? As mine is. I am no expert at all on ASD type issues so can only speak for the ‘classic’ FBT process which worked for us.
The first thing I want to say is please do.not beat yourself up about missed appointments etc. I am outraged about your discharge based on this. Dealing with a child with a serious mental illness is a full time job and I would have thought it would be expected for some missed appointments.
We have only ever had on line sessions (except for assessment and 1 psychiatrist meeting) and within about 2 months we decided to leave DD out of the meetings. She got nothing out of them. She was withdrawn and I was hamstrung with what I could say as she was sat there. Since she stopped attending I have had weekly (now fortnightly) meetings via Teams with her key worker and I have used her for support and strategies although most of what I have done I have learnt from reading books, a Beat support group called Solace and a FB group which I have since left as it got too much.
Your DD is clearly still in the grip of anorexia and I would take back all control of food and use any leverage you have to get calories in her. I snuck calories in which I know some don’t agree with but it worked for us. We used 3 meals, 3 snacks, one dessert and 2 milk drinks a day and stuck religiously to it. I started at c 1800 cals and gradually increased portions and cals (by using butter, double cream etc) until she ended up on c 3300 which she needed as she exercised throughout. Again not usual practice but it worked fo us (sort of once we eliminated all the illicit exercise and standing etc etc which was a slow and painful process)
we started to see some of our DD returning at 85% but she was not really able to make good and sustained progress until she was over 100% wfh. This is heavier than she ever was before her ED. But her mental state improved massively with the extra weight.
Those long long months clawing our way to that weight with me tied to the kitchen and meal plans and the daily battles to get her to eat were long and v arduous. I used leverage with her ( in her case permitted activity which she loved for) to get the food in. Without the plan being eaten there was no activity. That was her motivation.
I was compassionate but relentless. Even when all I wanted to do was scream into a pillow. Which I did frequently.
She was violent to people and the house, aggressive, hysterical, often inconsolable. She ran away in socks, head banged, clawed her skin and hair, tried to jump out a window. She paced around the house in all weathers. Refused to come in from the snow. To start with this was 24/7nbut gradually reduced.
I learnt distress tolerance and that saying less is more. My most potent phrase bi]wing ‘I am sorry this is so hard for you’ or ‘I can see how hard this is for you’ and saying nothing else. I sat outside her door for hours waiting to be let in. I stroked her head for 2 hours a night to help her sleep.
My DD often said she hated me. I said I would rather she be alive and hate me than love me…. Since she has got to wr our relationship is better than ever (well is good as a relationship with a 14 year old teenager and her mum ever is!).
She started taking olanzapine in the Jan which was a godsend for her, helped her sleep and eased the voices a little.
I controlled everything. I only started giving her any independence when she reached 95% and even then it was only because I had to as she was at school. She came home for lunch but had to have snack at school. Just before term ended and at over 100% wfh she started school dinners again with discrete observation.
When she was v ill she was completely untrustworthy. Throwing food away. Sneaking in exercise. Meeting a friend for a walk staying after the friend had left and running. Standing constantly. Etc etc. I had to crack down hard.
She also refuses to engage in therapy. I wanted it right from the get go. It would never have worked. She was too ill to process it. Now she is well enough she doesn’t think she needs it. Apparently this is v common with younger patients. She literally just needed food and weight gain.
We still have issues around eating out and take always and a tendency to exercise obsession (the latter is part of her elite sports tbh she has to be v driven to get where she has). But she believes (as do I) that the lockdown was the trigger and weight loss (accidental) the cause.
It is the single toughest thing I have ever done. And it wasn’t linear. I lost my shit often (old hands on here will remember me smashing her garmin watch with a hammer after she broke my oven….or me having a spectacular break down in front of DD and DS 2 on holiday) but I tried to forgive myself for that.
So my main advice is just to keep going. Feed feed feed. Use any leverage you can. Don’t worry about ‘going too far’. Perhaps accept that therapy is not usually the answer until they are much better.but keep going.
But also find time if you can to be kind to yourself. I didn’t really and paid the price nearly burning out and loosing my marriage. Beat do excellent courses called Developing Dolphins which I have just finished which I should have done when I was at your position but never found the time for. It would have been time well spent.
Sorry that was a bit of an essay. Hoping some of it is helpful….

lotts Even though I know everyone's story it still hits home reading it in one place - and I know that is a truncated version too. Onwards for you and DD

@myrtleWilson it still a bit of an essay
I guess during isolation I had a lot of time (too much) for reflection.
One day I need to write it all down for my own sanity.
Hope you and your DD are ok?

Hey all, hope everyone is doing well. We’ve had a minor setback. DD confessed last night that she has been water-loading ahead of me weighing her the last 3 times (with the first time being 4 weeks ago). The upshot of this is that she is 1kg lighter when I weighed her this morning than I thought she was last week. But more importantly it now means that I have no idea whether she has been gaining every week (but just at a slower pace) or whether she’s lost some weeks and not others and whether what she is eating on a daily basis at the moment is enough to see appropriate weight gain. She assures me that this is the extent of it and that she hasn’t been purging or secretly exercising or anything like that. But now I don’t really know what to think.

Gosh @Rollergirl11, it's amazing how much difference water can make. I think you just have to take the overall trajectory and not obsess too much about the weights of individual weeks. And at least she was open with you.

Gosh @Lottsbiffandsmudge the story is so inspiring written all in one go. I remember ours 'starting' out at the same time and are similar ages. Unfortunately DD's weight is exactly where she started and recovery seems to recede further into the distance. Sigh. I never would be able to get away with hiding fats in her case as she can taste it and then it just fuels the paranoia and desire to control.

And oh god I've lost my shit so many times. Often in front of her. It is such an infuriating illness.

Hi everyone, it's amazing, looking back over the months, how much we have dealt with. DD1 is still struggling with food intake a bit. She's lost 700g in 2 weeks, so I need to get on top of it.

I think your journey is very inspiring lots you've done an amazing job with your dd and are a testament to the fact that FBT does work.

Our journey feels long and never ending and is definitely complicated by dds particular personality and ASD traits. In some ways her willingness to follow rules and hand over some control has worked in my favour. For example she stays completely out of the kitchen during meal prep. I genuinely believe she doesn't want to know what goes into the food, she can't be anxious about what she doesn't know. This goes for the weight checks as well.

However the rigidity in her thoughts also holds her back as she absolutely will not consider eating outside of her current 'allowed' times.

I'm not sure how we will move passed that tbh 😕

Mood wise though she has been much happier once she got to 99% wfh so I will keep pushing on.

Has the clinic made any progress valley?

Roller that's great your dd fessed up, I'd take comfort from that and watch her like a hawk before any future weigh ins!!

My dd is still completely untrustworthy in most food related decisions, she left more of her pudding than I allowed and then lied about it 🙄 she must think I'm thick!!

The clinic hasn't made any measurable progress, @Girliefriendlikespuppies, but we haven't had any massive blow-ups since she's been there (one week, then a week off on holiday, then one week - although it's only in session Mondays, Tuesdays and Wednesdays). She's following the meal plan almost to the letter, but it is a much gentler meal plan - breakfast is one course with fruit and fat (e.g. cream cheese, faxseeds, cream), morning snack can be a banana, a smaller lunch than we'd have before (no yoghurt, only one piece of bread), afternoon snack, no dessert at dinner and then a large snack/ensure.

We're very much hoping to go abroad in two weeks, but will take advice.

Hi all, just checking in as things all appear to be going tits up for us, and I woke up sobbing this morning as I was dreaming DD was in hospital and was dying. It's just awful and I don't know what to do anymore. I have no life, I can't work as I'm just sitting with her all day trying to get her to eat, the house and garden is turning to Sh*t and I feel nauseous with anxiety all the time. How does anyone ever come out of this?

Oh I feel your pain @DarkBlueEyes . I had 3 months of this excruciating limbo. I felt like my wonderful little family was broken. I was broken too.
It will get better , it's a long process especially when each day feels so critical. (And did feel life or death at times). But you will see progress. One day DD just was tired of being ill. That seems to be a general theme. Hold on!! You are doing exactly what you need to do, right now. We are 7 weeks since weight restored... the ED still lives with us, but we are giving it very little space to take over again. Sending hugs x

Ahhhh DarkBlueEyes sorry to hear you’re having a rough time. It’s all consuming and relentless. But slowly it will get better. DD is having a bit of a down turn at the moment but before this we were seeing many more periods of our beloved DD returning to us. Take each meal and each day as it comes. Don’t look too far in to the future. And just keep going. We have all been there and know how exhausting, frustrating and endless it all seems.

I actually had a bit of a meltdown myself earlier. I went for a swim this morning (this is literally my only “me-time”). I got back home just before midday, asked if DD had had her snack, which she has been having at 11.30 since forever. A resounding no from both DD and DH. I just saw red and had a screaming crying fit of epic proportions. Sometimes the burden of responsibility just gets to us. I think it had been brewing for a little bit and it probably needed to come out. Hopefully the 11.30 snack won’t be forgotten tomorrow as a result. 🙄

My point is you need to be kind to yourself. I know it might seem impossible to do so at the moment but try and make a bit of time for you. Even if it’s going for a drive and turning the music up loud. It will get better. Slowly.

@DarkBlueEyes that's so very hard. One meal at a time.

I hear you @DarkBlueEyes - it's very enervating - I can't achieve anything as I'm just thinking/planning/buying/pushing food or worrying about DD. My work has gone out the window, but I'm not replacing it with anything useful either. I'm just about managing some exercise and walking the dog.

@DarkBlueEyes - it is so hard and all consuming. I remember being terrified one time when DD was in hospital and they were doing her obs and her heart rate was mid/upper 30s. I also remember posting on thread 2 or thread 3 here saying it felt like the window of opportunity to change it around was closing - as it happens literally a few days after that post, DD decided she wasn't going to let anorexia kill her and entered recovery. It feels so bleak at times but hold on, keep posting here - there will always be someone around to support you.