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...

Thanks all. Think we are going to be headed back to a&e in the near future anyway.

She's pushing back so hard. She told me at dinner today (whilst totally refusing again) that she wants to be skin and bones, she wants people to be shocked when they look at her. She doesn't want to eat food, she just wants the fortinet.

Then she proceeded to fight over drinking the fortinet.

I'm also really angry and cross with the private psychiatrist this evening. I might have to sleep on it before posting, but he's definitely not helped and may have even made things worse.

Has anyone else been contacted by a social worker? I spoke to her earlier and she called again when I was in a cab with DD on way to psychiatrist so speaking to her tomorrow. Im not sure what the involvement means or is going to help with?

@LittlePickleHead could you make it so she has to have an amount of fortsip that is more calories than the food? also I know it is not ideal but if you can get her weight back up, even if it is solely on fortsip her brain will start to heal and it will become easier for her and you to tackle food and fear foods ? That is just one train of thought though !

also yes I have been contacted by social services largely due to violent behaviour from D when she has outbursts such as plates smashed, things thrown at the TV, shouting, hysterical pacing, etc so we were worried about the impact and sometimes it sounds awful to say but safety of the rest of the family so they came and sort of assesed the situation and also come and offer a sort of therapy session for the rest of the family and signposted us to support groups sort of thing, so they don't do anything to help D but do help the rest of the family.

could I ask for your opinions on the fact that D tonight was given food she doesn't like and has not liked since birth so this is definitely not ED and because she did not finish it the dietician had wrote on her meal request note if she doesn't finish it she needs to have an NG tube ( not her regular one, hopefully she should be coming tomorrow AM) this is absolutely worst nightmare for D she has actually been diagnosed with PTSD from previous trauma in hospitals and cannulas and tubes and a massive trigger just being In hospital is awful enough. but because she didn't finish (although did eat all the parts she liked and agreed to have a extra biscuit to make up) they said she needs to have one, my husband pointed out she doesn't like it and they said well they all say that ! my daughter was hysterical having a panic attack and they were trying to restrain her to insert it, my husband thankfully stopped them eventually calmed D down 3 hours later and managed to get dessert and supper and the extra biscuits ! but surely this should not of happened or am I being overprotective ?

It's actually really tricky as at this stage she hasn't really lost a lot of weight so the weight restored thing I'm not sure what it means?

She would no way drink enough fortinet to replace Al her calories, that would be about 9 or 10 bottles, she fighting about 3!

Love that doesn't sound right, can you give them a list of foods she genuinely doesn't like? I would have kicked off about that heavy handed approach especially as it sounds like your dd is really trying bless her. Everyone has foods they don't like for goodness sake.

Little do you know where your dd sits on weight per centile lines normally? Although she might not have lost dramatic amounts of weight it definitely sounds like her brain is massively struggling. My dd was really ill at 90% wfh, she told me recently she wasn't even putting toothpaste on her toothbrush at one point as she was so scared about the calories infecting her... my dd has always been around the 75th per centile for weight growing up so should be over 100% wfh.

I think things like your dd being forced to eat foods they really dislike is wrong as long as they are eating most other things or are able to choose Fortisip or whatever, my DD eats most things but hospital food is sometimes odd and occasionally inedible and I do wonder what overriding their will at all times without exception is doing, when a tiny bit of flexibility goes such a long way. Especially in traumatized teens. Surely someone on the ward knows if she usually eats!

@Girliefriendlikespuppies I'm not totally sure about DD's usual centile but going back to the red book she was also around 75% at those stages and would probably have stayed around the same until this kicked off. She's noticeably thinner now so you're probably right that she actually does have a fair amount of weight to put on.

I need to get opinions on the psychiatrist appointment last night. DD doesn't like him (to be expected I guess) and he has a quirky manner, but is a recognised ED expert and is really just a conduit to getting her on meds and finding a therapist (we initially went to him due to GP not referring to CAMHS due to waiting lists and giving us a private referral instead).

I hadn't told DD whether she had gained, maintained or lost weight has she had previously been visibly happy at not gaining (never told her the actual weight) and so we had an agreement not to talk about it. He told her that despite her not eating, she had maintained so it hadn't done anything yet.

Then when I came up after they had spoken he told me she had disclosed she wasn't eating at all now but hadn't offered and explaination and did I know why - I don't obviously.

He the looked quite exasperated and said I'm sorry I can't help you now if she's not eating and the therapist probably won't see you either as they won't be able to work with you. This will be hospital now.

I wasn't expecting this and so was like, what do we do? And then he proceeded to make DD agree to eat for a month to keep her options open and do a promise on this, and only because of that agreement he would put in his letter to the therapist that they should see her.

I can see that his tactic was to scare her into eating and even while DD was promising I knew it wouldn't be that easy.

The minute we were out she said she had her fingers crossed, she hates him, she won't do it etc

I'm worried now about the therapy referral (17 Nov) but maybe he's right and actually it's a waste of time if she's still surviving on fortisip at that point? But I don't really know if seeing him again is beneficial at this point and we just need to ride it out til we see the Maudsley on 1 Dec?

Would appreciate thoughts as I feel really angry with his approach. DD took from it that everyone is abandoning her. It didn't make her eat though

Also re: school and pe im still confused about what to do about today.

Psychiatrist was like - no food no school.

I worked out between fortisip smoothies and nuts she had about 1700 calories yesterday, so not nothing but she will lose weight on it.

My feeling is to allow her to go to school if she has smoothie and fortisip, but no PE if no actual meal for breakfast.

but this is contra to what the school said and the safeguarding lead said she needs a letter from the GP saying no PE (which I don't have). And as her weight not that low the GP didn't yet say to stop.

Im struggling to give a consistent message here

LittlePickleHead My dd hasn't had cbt yet. I'm told she's too low wfh and needs to restore before it will be effective.
Allowing PE is ludicrous. It's sending her a message not eating but being physically active is OK. All activity should stop and, where possible, she should driven to and from school. As little walking as possible.

Can anyone advise as Dd is still checking calories and insisting I weigh food. She's not allowed in the kitchen while I cook so I ignore and serve up according to her diet plan. But when she says 'Did you weigh/measure it?' I say Yes. Even down to milk for her tea - she wants it measured out. The measuring jug is by the kettle and I put a drop of milk in so it looks like I've used it in case she checks/asks. At the moment I'm only concerned with getting food in any way I can and it's going in well so I don't think I can afford to challenge her. She's not hovering over me anymore while I cook but asks if I've weighed and measured her dinner according to what she's asked for.. 50g rice 50g pasta etc (I do almost double). As she restores will she start letting go a bit or is this something that I'm going to have to challenge at some point? Also she's gaining and probably wondering why as she thinks she's eating less than she is. I'm so worried she'll work it out and have a massive relapse at some point :(

Why I wouldn't outright lie and say 'yes' but I would say 'you have exactly the right amount' which is true iyswim? You can also say 'I'm giving you exactly what your body needs' which is also true. If she kicks off you could say 'I'm your mum, I've known exactly how much food you've needed ever since you were born and that hasn't changed.'

Is she being blind weighed? If so even though she might suspect she's gaining weight without it being spelled out to her she can keep the ED voice under control.

Little the psychiatrist sounds less than useful, tbh all your dd needs at the moment is food and lots of it, therapy will be of no use to her at the moment. She sounds similar wfh to my dd who has needed to go right over 100% wfh to see an improvement in her mental state. Camhs will be the authority over school, PE etc so I would keep ringing them or go to a&e to get her assessed by them asap.

We had a small victory Ystd in that dd went with college friends to macdonalds and ate a large portion of fries which was in addition to her normal food 🎉 she had a lot of guilt when she got home but still managed her dinner and pudding.

Girliefriendlikespuppies. Thanks. I'll keep saying that. It feels so deceitful but I'm trying to save her life so I hope when/if she realises she won't hate me.

Yes she's blind weighed and the therapist just says 'You're doing well' each time which I assume she realises means a gain. Even I don't know how much she weighs and I only know her wfh if I email and ask after our appointment. Wfh was 78% back in July and she's around 85% now so it's very slow progress but her skin tone and mood (monthly hormones aside) is much improved but her body looks much the same. I guess the repair must start internally first before the muscle and fat layer. The dysmorphia is still there but doesn't seem quite as crippling as it was. All in all she's slowly recovering but it's s such a delicate process and progress feels fragile every step of the way. I'm always on high alert for any changes in behaviour or eating. I sometimes wonder if I'll ever feel relaxed again.

So pleased to hear your dd had fries and still had her dinner ❤️

Why if it helps my dd now knows I added fats to her food and increased portion sizes and while she would never admit to being happy about it she accepts she was too unwell to make a rational decision about it at the time. She is also happy she feels and looks better and is living an (almost) normal teen life.

The only thing you are deceiving is the ED, not your dd and the ED wants your dd dead so 🤷‍♀️

I would ask the team not to say things like 'you're doing well' it's not helpful. All of dds team remained completely poker faced when dd was weighed and made no comment. I was told her weight and would only mention a loss to dd as that meant more food. Dd was also keen to avoid me watching her eat at school and the deal was any loss then I would start coming in at lunchtime.

Girliefriendlikespuppies

Thanks that's all so helpful. I feel we're at the stage now where one little wrong thing said or done could upset all the good progress. It's like the game Buckeroo I'm scared to push too much in case it all goes bang.

Sorry I know I'm leaning very heavily on the board at the moment.

Having to accept the fact we can't shield our DS9 from what's happening any more. It's too obvious that I'm sitting away at the table with DD and she's not eating. He also told DH that he's felt sad for a few days.

Any advice and support on best approach? How we mitigate this? DS went through a period of anxiety after lockdown so I'm aware of the risk of this escalating.

I'm devastated and bereft

@LittlePickleHead it's very difficult, isn't it, with siblings. I would offer a 9 year old age appropriate explanation of what's happening, same as if she had any type of illness, and explain it's nothing to do with him as well, so he's clear that it's not his responsibility to 'fix' her. Personally and this is just my own view, I don't make my other teen sit with her sister for 'family meals' with fun discussion over the table and never have, it's too stressful for her (the other child). Sometimes we eat as a family and watch TV, sometimes we don't and it's fine for my other child to take their dinner and eat elsewhere, that mix is what we used to do before anyway. I think using other children as meal support/props for family eating is not something I'd be doing, even though sometimes family therapy approaches do pull in the other children. Also, my child's sibling has been upset, angry and distressed at times at seeing her sister starve, and so I think asking her to be a support person for her sister (beyond being polite, caring, fun, occasional argument teen relationship) is not ok. He needs support too to handle all of this, say letting school know, open discussion (age appropriate), mindful if he needs support/therapy.

Be reasonably honest, though, that's one regret I have about a different situation with another family member getting sick is that I tried to hide it for a long while and ultimately the child (who was about your son's age) ended up knowing and stressed and powerless anyway, so I think honest and keeping lines of communication open is the way to go (having done it all wrong!)

Thank you all for the reassurance I was not being over protective ! The ironic thing was she had eaten the quiche with all the pastry and egg and creamy filling but didn’t eat the chickpea salad as she generally doesn’t like chickpeas not the other way round which may be a bit more believable to think she doesn’t like it. Thankfully we meet her normal dietician who is absolutely amazing and as helped us put a plan in which allowes me to cook her meals still and ignore the hospitals food even though still in hospital

@Girliefriendlikespuppies well done to your D that is amazing thank you for sharing it brings me hope

@Whyisthishappeningtous I don't know how feasible it is but I have told all people D has contact with well as many as possible so grandparents, siblings, family friends, other parents not to comment at all on how she looks even you look well just don't say anything if in doubt as we have had a few cases which have been meant in good faith but lead to refusal

@LittlePickleHead sorry I don't have much advice as struggle with the same I do stress it is not their fault one bit as one of my daughters was worried she was to blame which I didnt know she felt that way until she open upon to my mum. Also make time for them to talk about how they feel about the situation and reassure they are allowed to be angry and hurt etc also allow them to talk about any difficulties or stress they have and try and show them their difficulties are just as important to us. one of my daughters struggled to open up to anyone so we found that she would write how she felt down and then we would read it when she was not present then talk about what she wrote later in the car as she didn't have to look at me

@Whyisthishappeningtous the cal counting and weighing food etc should ease with weight gain.
There are different schools of thought on hiding calories but I did it and don't regret it at all. It's never come up now DD is recovered. She no longer counts cals or worries about portion sizes etc.
It took a long time to get here tho. At least 12m at weight restored (altho it was easier the heavier she got) And your gain in wfh is great! So its all going the right way.
There will no doubt be relapses because its the nature of the illness. And to some extent you can't tiptoe round the ED and hope to never upset it. You almost have to.
@LittlePickleHead you are having such a tough time. Some great advise given already re your DS. I think it's key to try to reassure him that it is in no way his fault but I think you need to be honest that his sister is extremely unwell but that you are getting help and everything you are doing is in her best interests. He will see conflict and needs to understand that its part of treatment. I didn't spell that out to my sons (older than yours) and they thought I was treating their sister badly! And punishing her for being ill when the fights etc were part of what she needed.
The psychiatrist sounds unhelpful.
With regard to school if she is not eating at all (regardless of fortisip) I'd be taking her out. In reality what will they do? It'll take weeks for any actual action to happen by which point you will have your Mausely appointment.
And in terms of lost learning She won't be in a postion to learn anyway with her head so full of ED thoughts. She is clearly extremely unwell- her absolute weight here is totally irrelevant.
Her life is nore important than her education.
And yes as PP said CBT is pointless for her. It's v hard work requiring lots of homework and she simply won't be up for it. Moreover if she tries it and it fails to help (because actually the only thing that can help is food) it could jeopardise her successfully accessing therapy when she is in a position to use it.

Thanks so much.

How do you pick yourself up with you are so terrified and bereft but have to keep going for the sake of both kids? I can't stop sobbing today.

We've been bumped up to an urgent assessment at the Maudsley and I spoke to a lovely psychotherapist who actually said to keep going as I am - compassionate caring, but not to make meals a battleground for now.

So offering and encouraging food at each meal and snacktime, but supplementing with the fortisip for the moment, and trying to keep her in school until the assessment (but no activities at all, obviously) as it's something that is motivating at the moment. She said I've done really well with no professional support to this date, but that the aim now is to get to the appointment whilst getting as much into her as I can through what she'll currently eat.

Obviously if it gets worse I need to go to a&e. It's made me feel more reassured about what to do now.

DD was so adamant at lunch today. She ate the nut pack I brought and then just point blank 'no, I won't eat it. there's no point in trying'. I did the spiel but now she's getting annoyed at my same old phrases of 'you can trust me' etc. I know I can't stop but it's so difficult when I know there is a time limit she can sit out as she knows she has to get back to school.

I know there are others who have come back from terrible times and are now more positive, but all stories are helpful at this stage as the future is a terrifying unknown right now.

@LittlePickleHead I agree with the psychologist, try to get her to the appointment in one piece, with A and E as your backup if you think she is really ill and needs urgent assessment (e.g. if dizzy, faints or hasn't drunk anything). I would let some of the rest go for now as putting in a whole meal plan is something the Maudsley have expertise in and will tell you and her how to do this and how to cope with these situations- you are not an eating disorder support person and it's too much for both of you to plunge straight into something you barely understand and know how to handle it all at this stage. This is just my opinion and others might think different. Of course encourage eating, have in plenty of things she will eat, but don't get cross or upset or mad at her and create even further resistance at this stage, til you have got the full support and knowledge you need to make this work. The other psychologist sounds sensible and I would also ask the Maudsley for advice on how to handle these few weeks (and get their book!)

As for crying all the time, this is overwhelming for you, for her, for your husband, your future life and everything. Things will change but sometimes unfortunately you all have to get into crisis to get help. But help is coming. I shouldn't think there's one person on here who hasn't cried buckets. The Beat helpline are great at listening to people crying! I wouldn't pretend to the kids you are all fine if you are not, just don't turn it on anyone just say 'I'm really upset as this is an upsetting situation'.

That's @Buteverythingsfine it's actually a relief to have that as a goal now and to focus on what I can do, rather than trying to do it all and potentially getting it wrong.

I think you're right about the crisis. I kind of thought I was doing OK bumbling along on my own whilst waiting patiently for support, but I think we were going to hit this point sooner or later. I think it's because it was going OK that the ED has fought back so hard and DD13 has now gone full throttle into achieving her goal. At least the crisis has meant we now have support lined up

We had our initial assessment with CAHMS Ed team yesterday and Dd has anorexia, is very unwell and we’ve embarked on FBT - have been given a meal plan. Just wondering how anyone has managed this and work? My dh is like well obviously you just go to work on Monday and she goes to school - breakfast alone took an hour and then she ran off round the garden in her pjs in the rain….

@mamagnummum - I've just been signed off for a month. I have to meet DD for lunch everyday, and to be honest, we've had so many appointments to attend, I just couldn't function properly at work. Planning what to cook every night also seems to take all day. I did manage to work for the first couple of weeks, but then the ED started really kicking back and it got v difficult. Good luck - hopefully your work will be flexible too - I would advise to not look too far ahead at this point, as things seem to change every day here.

Thanks Swatty - I’m trying to just think about a day at a time - my dh seems to think I’ll be back at work on Monday and Dd will be at school as if everything is fine😕.