Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

Thanks @Valleyofthedollymix that's a great suggestion.

At diagnosis was 80.44%, two weeks ago was 87%. We went on holiday and gave her a bit of autonomy. Big mistake. She has lost 900g and is now refusing all the things we used to give her. The main issue is the daily milkshake with Ensure (and ice cream and cream). Which she is hysterical about.

I don't want to give in as then the ED has won. What do I do?

She is now worse than she's ever been but we are SO far away from being well and CAHMS ED Unit (Epsom) are going to discharge us as she is no longer a safety risk apparently. To be honest, I hate the weekly sessions by zoom with the care coordinator, as I just feel totally told off and useless at the end of them (I'm sure she doesn't intend this, but the impact is massive) and DD doesn't engage at all, bordering on rude actually. i won't even ask the CC for advice as I can feel the eye rolling from here. So I suppose discharging us won't actually make a blind bit of difference will it?

She has refused to entertain any idea of therapy or alternative treatments.

Can anyone help? What should I do about the shakes? I really feel they have been instrumental in getting weight on her - which is why she hates them so much.

Thanks all

DBE x

@DarkBlueEyes sorry just about to head somewhere but just wanted to say we are with Epsom too!! They wanted to discharge us too but I kicked up a fuss! I will reply later this evening when I get the chance. xx

Hi everyone,
I’m so sorry to have read about the struggles your young ones are having, but reading has helped me a little too so thanks for sharing.

I hope someone can help, Dd 15 has seen a Gp for an eating disorder. Her bmi is 16, she’s incredibly thin. Her bloods came back fine. She’s not had a period for approximately three months.
I mistakenly told the GP that she was brighter last week so he said she probably didn’t need a referral as her bloods were all fine. He said that was remarkable considering her low bmi. She’s literally wasting away before our eyes. Does that sound very low to you all?
We ensure that she has three meals a day but they are small and she severely restricts what she eats. Only fruit and veg basically. She will only eat fruit or porridge for breakfast. She first became vegetarian in January which was fine and we all did, but a couple of months ago she said she wanted to go vegan. I think this was when I first began to think that it was more about restricting her diet than anything else.

We’re at our wits end and don’t know where to go for help.

When DD does eat she cries afterwards and feels guilty and ashamed. I suspect there may be some self harm after eating too but I don’t know for sure. She sometimes disappears after meals to the bathroom. I’ve taken the scales away as she admitted she was obsessed with weighing herself. She tells me she feels that she doesn’t deserve to eat.
The GP is calling me tomorrow and I will insist on a referral and I’m also seeking a private therapist.
I just feel so desperate and don’t know where to turn for help.
Sorry if this is all a bit jumbled, I’m tired and worried sick.
Thanks for reading x

@Bettybarkalot123 I think that sounds really low and to be honest the GP contact we've had has been very poor. They ignore the behaviours which seem critical.

Don't allow her to go to the bathroom after eating. Sit with her for an hour, this is what we've been told. And hide the scales. She sounds really distressed and really ill. I am so sorry, it's so shocking isn't it, and so hard to deal with. I've cried more tears in the last three months than I have in years.

Have a look here: seed.charity/wp-content/uploads/Restoring-Healthy-Eating.pdf

BEAT also has a good page on identifying if you have an ED.

Just emphasise the behaviours - you don't need a low BMI to have an ED, that's somethign I've learned. Stick to your guns!

DBE

@DarkBlueEyes

Thanks *@Valleyofthedollymix* that's a great suggestion.

At diagnosis was 80.44%, two weeks ago was 87%. We went on holiday and gave her a bit of autonomy. Big mistake. She has lost 900g and is now refusing all the things we used to give her. The main issue is the daily milkshake with Ensure (and ice cream and cream). Which she is hysterical about.

I don't want to give in as then the ED has won. What do I do?

She is now worse than she's ever been but we are SO far away from being well and CAHMS ED Unit (Epsom) are going to discharge us as she is no longer a safety risk apparently. To be honest, I hate the weekly sessions by zoom with the care coordinator, as I just feel totally told off and useless at the end of them (I'm sure she doesn't intend this, but the impact is massive) and DD doesn't engage at all, bordering on rude actually. i won't even ask the CC for advice as I can feel the eye rolling from here. So I suppose discharging us won't actually make a blind bit of difference will it?

She has refused to entertain any idea of therapy or alternative treatments.

Can anyone help? What should I do about the shakes? I really feel they have been instrumental in getting weight on her - which is why she hates them so much.

Thanks all

DBE x

Is it just the milkshake she is refusing? Are you still insisting on 3 + 3? I think I would probably go back to basics, assure her that you know what she needs to get better and that she has to eat everything you give her. Use whatever you can as leverage to ensure that this happens. So no phone, no seeing friends and no excursions/trips until she’s back eating what she needs. She did it before so she can do it again. Be strong, be firm and don’t negotiate. Do you know how many calories she’s getting roughly a day? I know our CAMH’s say not to measure or count calories but I have found that I have had to in order to work out what DD needs per day to gain the appropriate weight each week. I record everything DD eats on MFP.

On to CAMH’s. DD and I hate the sessions too and we don’t feel like we get much benefit from them. However I was still not prepared for them to discharge DD before she was even weight restored so I made it clear during our treatment review with the psychiatrist that I would be making lots of noise if they did this when we weren’t ready. They are now extending FBT sessions for us and now that DD is around 95% wfh they say that she will engage in some therapy so they are giving her some sessions on her anxiety and body image. She had the first one of these at Epsom this afternoon. But we have also been paying for DD to see a private therapist since she was diagnosed in May. DD engages with her far better than the care coordinator ( who DD absolutely hates) and I would recommend going down this route. Don’t whatever you do tell CAMH’s though as I heard of another family who saw a private therapist and CAMH’s discharged then when they found out.

Did you do the Parents weekly rolling teams sessions on a Wednesday? I found these more helpful then the sessions with our care-coordinator tbh. Our woman never answers our questions and is so wishy washy with her responses that we’ve pretty much given up asking her anything.

I'm sorry you are all joining us. It's a horrible illness, isn't it.

@DarkBlueEyes would your DD eat something less creamy? I used to serve DD1 pancakes, which didn't look like much, but using duck eggs and double cream, they packed in 1500 calories.

@Bettybarkalot123 you're right to think your DD needs that referral. It doesn't matter, really, if her BMI is 17, 16 or 15 - she's severely underweight and if she doesn't get help she'll get thinner.

Don't be fooled by the bloods. DD1 had a BMI of 13.1 when she was admitted (68% WFH). Her bloods were fine. As soon as she started eating more in hospital, she went into mild refeeding syndrome and needed electrolyte supplements.

Yeah, I wouldn’t trust the GP. Ours put his weight and height into the NHS BMI calculator and declared him a ‘healthy weight’. He was 6st 7lb at the time. On the NHS calculator a weight of 6st 7lb comes out at ‘healthy’ weight for his age and height. 6st 6lb is ‘underweight’. It’s ridiculous to suggest you go from underweight to healthy by gaining or losing 1lb.

If the GP had taken the time to actually look at him properly it’s very obvious he is not healthy. His bloods are also fine apart from low ferritin. Went to see a surgeon for an unrelated condition and he ended up writing a scathing letter to the GP saying he was very obviously underweight.

@Bettybarkalot123 so sorry you've needed to find here but there is a lot of support.
I would urgently seek a second opinion. You could take her straight to a&e if she's that underweight. Do you know her weight?
Dd got admitted into hospital following what we thought was an initial assessment but looking back was the best thing that could have happened because it highlighted to dd how serious things were.

I have to agree with @NCTDN there. DD1 was being bounced between a GP and a dietician at 68% WFH and a BMI of 13.1! Eventually I phoned the GP and said 'DD1 feels dizzy when she stands and her heart rate goes to 144. I just thought I'd check that's ok...' She was sent to A&E and stayed in hospital 9 days.

Hi, I haven't read all posts will try and catch up, going through this with nearly 16yo DD, so far been to gp and waiting on help from local mental health team. DD is already receiving counselling for anxiety and panic attacks and now he weight loss is very worrying

Hi newbies s as though sorry you've all had to find us.

Betty bmi is not useful for children, wfh (weight for height) gives a better indication of where your dd is and should be. There's kind people (Lougle) on this thread that will work it out for you. Your dd sounds really very unwell and I would start bracing yourselves for full on FBT (family based treatment.) This means taking full control of all food related decisions, 3 high calorie meals plus 3 snacks every day. Use whatever leverage you can. It's a full time job so if you work you may need to take time off, your dd will be very distressed 😕 I'd also refuse to cater to any vegan or vegetarian diet until she's well and been well for a long long time (years.)

We're a year in to FBT now, my dd is also 15yo. It's been a bumpy road but slowly I am seeing glimpses of her coming back.

The big news here is my dd ate CRISPS for the first time in 16 months!!!

She's also going to a friends for a sleepover tomorrow, I have mentioned the ED to the mum and checked there's no scales in the house. She was lovely about it and was very understanding.

I'm making the most of a childfree night and going out for dinner!!

Dark you'll either have to keep going with insisting she drinks it or find away to add the same amount of calories somewhere else in her diet.

I eventually admitted defeat getting my dd to her evening milk and biscuits but discreetly overtime increased her main meal and pudding to compensate. I honestly don't know if that was the right thing to do but my dds weight has consistently increased doing it this way.

Wow @Girliefriendlikespuppies that's amazing. It's fantastic when they take a step forward, isn't it?

@Bettybarkalot123 if you want to PM me your DD's height, weight and date of birth, I can tell you her weight for height, which is a measure of how much she weighs in relation to the 'average' child of her sex and height.

Thanks for the replies everyone..
So.. DD has a first appointment with a therapist who specialises in e treatment of anorexia. It’s today. It’s private but she’s been recommended to us, it’s using zoom. Would rather face to face but this will do for now.
I also have a call from the GP booked this morning and will press for an urgent NHs referral.
We’ve just cooked a big breakfast for her which she is eating. Hash browns, eggs and beans. She definitely wants help, she was crying again last night. Feeling guilty because she had eaten too much in the day.
I’ll message you her weight later today if that’s ok. Just need a reminder of what it was from the GP. The therapist also has asked for this info.
I feel absolutely wrecked. Tearful and just devastated… we all do.
I have this week in work then two weeks off. Will do my best to make it a happy time for us all.

Good luck today @Bettybarkalot123 - and well done to your dd for eating that breakfast.

For those of you struggling with unhelpful GP's, we actually self referred to our local NHS Eating Disorder Service. Just had to fill in a form and attach her blood results. (Actually it go was good, but I wanted to make sure the referral was done properly with lots of information in it).

Not sure if every NHS trust has this service, but I'm so happy we haven't had to go through CAHMS.

Ours won’t accept self referral- I called them yesterday to check. Spent most of the day on the phone yesterday and thankfully hit luck with a local psychologist who had a three month wait but recommended her colleague who could start straight away. I’ll let you know how it goes.

DD seems happy that we’ve taken the control away and she seems to enjoy her meal, but it’s after eating and as the day goes on that these crippling negative feels of guilt and worthlessness seem to kick in. Is this anyone else’s experience?

Sorry my posts are full of typos.. v tired today!

@Bettybarkalot123 fingers crossed you get your referral from the GP today. But just to add that I also took my DD to A&E where she was admitted and they actually made the referral from there. DD had her assessment and diagnosis within 5 days. I think this sped things up immensely and I’m really grateful for that.

Yes it’s usually after they’ve eaten that the guilt and shame eats them up. The ED voice will no doubt be the loudest then. At one point DD’s ED voice was incessant and never let up. It seems to have quietened a bit for the time being. Although now her general anxiety is through the roof and her body image is at an all time low.

Welcome to new joiners - am sorry you find yourselves in this position. You've had excellent advice and do keep using the thread - its kept me going over the past year.

girlie fab fab fab news about the crisps - I'd try to get them in her again asap - a fear food doesn't stop being a fear food after one challenge (even if not a fear food I think the point still stands with EDs).

We're okay - Dd says her desire to self harm is quite strong at the moment but she's doing well in resisting...

Yes, GP referring urgently. She has lost weight since her initial appointment.
My daughter last night referred to her feelings as a voice within herself. She said it’s not a voice but it is.
Poor girl, she desperately wants to get better.
I did think about a&e but not sure we’re quite at that stage.

Betty the Tabitha Farrah book I've just read explains that because the sufferer has convinced their brain that weight gain is very dangerous the brain will chuck negative emotions at any threat of that happening. The brain thinks it's being helpful and protecting the sufferer from something it's been told is a threat.

Our job is to keep feeding, keep the weight going on so eventually the brain reprograms itself and the anxiety and negative emotions naturally fall away (in theory.)

My dd started at 90% wfh and was very unwell at that weight, she's now nearly 100% wfh and we're just starting to see some progress with her thought processes. She has been receiving CBT as well through another Camhs team which I think has been helpful (although not a magic cure unfortunately.)

Girlfriend good luck fur your DD on the sleepover tonight and enjoy your meal out!

@Bettybarkalot123 what a relief that your GP is referring. But I wouldn’t wait until you see CAMH’s to start on 3 meals x 3 snacks and a pint of milk per day. Especially seeing as she has lost even more weight. Did you also say that your DD has recently become vegan/vegetarian? They do say that if that is a recent lifestyle change then it is more than likely part and parcel of the disordered eating and another means for them to keep the restricting going. CAMH’s will probably want you to know that on the head.

DD says that her voice is just herself in her head. She finds it hard sometimes to distinguish between what is herself and what is the ED. But since she has been having her private therapy it seems that DD has had an “inner voice” for a long time that tells her she is not good enough or not worthy. But it is only since January that it started to manifest as an ED. Prior to this it has shown itself as anxiety.

Finally had our online meeting with the Maudsley ED service this morning. Feeling quite wrung out now, and it was pretty hard for DD as she just didn't know how to answer a lot of the questions, but they were really good and supportive. They gave her an official diagnosis of anorexia (which I knew, really, but is quite hard to hear) and we'll be going for an ECG and blood tests on Thursday. Weekly follow-ups booked in for the next few weeks.

Also got a proper meal plan which is not a million miles off where we are now but with some extra things/larger quantities. We seem to have got a bit stuck at her current weight so hopefully that will make a difference, and it will definitely be easier to get DD to follow a written plan as she seems really responsive to what 'the doctors' say she needs to do.

She's also slowed down a bit and isn't getting up at the crack of dawn to pace round the garden now school has finished. School (although she got a lovely report and has never not wanted to go) definitely seems to have been the source of some of the anxiety. Just hoping we can get her weight up significantly over the summer and start fresh in September.

@ItRainedForever is that a private service?
It's good (I'm a way) to hear of others who have a child who doesn't sit still. Unlike the typical lethargy that appears to be one of the symptoms, dd is at her most wound up when doing nothing.