teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Girlie - I hope the CAMHS appointment went well? I think that aspect of telling people what they want to hear is part of the DNA of an eating disorder. As far as I understand it, trying to depersonalise the eating disorder from the DC is a key aspect to almost 'isolating' the disorder. Thats massively oversimplifying it but the CAMHS team have spoken to DD about the anorexia being too noisy at the moment and we need to put it back in its box... which has some resonance for me.

theyseeher Oh the desire to say well done and hug in celebration is another area of learning for me. It goes against my parental instincts not to say 'you've done really well today' or 'think about what progress you've made'. When actual I've come to understand saying these types of phrases (to my DD and her eating disorder, at least) is like wakening the anorexia and giving it a megaphone to shout back saying "they're telling you you're fat - listen to them". It is soooo hard - but you're right, sneaking in a hug under the guise of something else is a good plan! I completely get the dual emotions of pride and heartbreak and I hope (allowing for some two steps forward, one step backwards) that DD2 continues to build on that.

princes - how frustrating (and really poor) that the information you've received isn't about your DD - I hope the fact they've made such a bad error may give CAMHS a rocket to get this sorted. The 2kg weight loss much fill you with dread.

In answer to your question about weight loss - DD is now at 58kg (so still healthy BMI). Because of her issues with weight, we chose not to have any scales in the house for years as we thought it would make her obsessive (oh the irony!). So its difficult to pin down exactly how much weight she's lost as the only 'marker' weights we have were GP visits. In terms of dress size - a year ago she would have been a 10/12 and now she's a 6/8..

You said princes - "not knowing what I should be doing" - for me this is at the heart of my struggle. Several of you kindly (or perhaps out of concern!) said I seemed calm and assured... I'm not, the other night in hospital I was so worried as DD was so tired and sleepy about what downward spiral this would put us into - I was v anxious.... However, I think what I'm learning is

• I need to acknowledge her feelings - I struggle with this. She says she's fat, I say she's not - turning it around to "I know you feel this way" is really hard..

• I can't 'fix' this - I can only support her and us to develop the tools that will help us mend this bit by bit.

*it isn't personal - (by god this is a hard one to hold onto!) but talking about and to the eating disorder helps depersonalise it away from parent and child relationship

• I don't really understand what it is like to be her and that is frightening

• treating medical and therapeutic interventions as a ladder up rather than a snake down the game of Eating Disorder Snakes and Ladders

*Big picture not micro focus - just as we all had to learn when they were toddlers - don't focus on what's eaten in any given meal or sometimes in any given day/week but what is the trend saying.

In a weird sort of way, giving into the fact this is our life for the foreseeable future has changed my mindset a bit..

That said, it is exhausting and terrifying and I know that I'm in a relatively 'easy' space at the moment - we've got lots of support, it is still early days. How it grinds out over years as bluebuddah and dishing have experienced is another mountain for another day for me..

It's interesting how a supposedly 'healthy' weight can be anything but! My dd is 52.8kg now and 169 cm tall, this puts her weight the low end of normal but actually this is significantly underweight for her.

The Camhs appointment went okay, she has gained a little bit more weight and her heart rate is more normal (it was very slow) They didn't really say much other than just to keep going as we are with me being in charge of the food.

How's your dd doing myrtle?

Am glad CAMHS went okay girlie how often will you be seeing them do you know?

DD is coming off the feeding tube tonight which is great - she still has her 'fear foods' but is managing with the supplement which at least means I know some of the physical/cognitive issues relating to very low calorie/nutrition eating are being addressed even if we've not got to the Big Tricky Questions yet...

Hope everyone else is doing ok?

Am finding all the advice a great help and although your all in awful situations its nice to hear your story, progress and to not feel so alone.

Since being back to school and being happier in her general behaviour the rest of the family aren't so worried and are saying oh she seems like she's getting back to her old self, despite the weight still dropping so feel like everyone thinks I'm being dramatic. But her weight dropped last week to 48kg baring in mind she was 62kg in May. (She's 163cm) But I feel like I'm just being told that she's in a healthy weight range so its fine. I mean at what point is it not fine. She still hasn't in person saw one bloody professional. Feel exasperated with it today.

And while I hate to say it I feel like the 'happier' mood may not be a genuine thing, that she knows if she changes her behaviour on the outside her Dad (who doesn't understand this at all and who's most unhelpful suggestions include taking her tv off the wall and her phone away until she improves) will see this as her making a change and think its all fixed.

I saw a lady on here post saying she worried her daughter would just say what she felt camhs wanted to hear and that's what I fear to.

Pffffttt hopefully tomorrow is a better day.

Great that your dd is off the tube, Myrtle - I really hope this is the beginning of the end of the worst for you

The depersonalisation was exactly what worked for dd1 in the end - she was encouraged to think of the 'ED voice' as a person, a kind of frenemy figure who wanted more and more from her and would never be satisfied

She even gave it a name, so when dd1 started with 'I don't like beans any more' or whatever, I could say 'is that you talking or Christopher' It sounds mad written down, but it was very effective

The saying what you want to hear is what dd2 is doing, I think

I feel stupid for not realising - because dd1 was so different, and blunt and upfront about everything (probably her ASD) Having said that, she is definitely doing better - another tiny weight gain this week - but I feel she's playing me to keep the gain as small as possible and easily reversible

Sorry your dd dad isn't being more helpful, Princes My DH started off with the daft punitive suggestions and hassling them to eat at the dinner table, but he's backed right off now and leaves all food and eating management to me

theyseeher - I think thats a really important dynamic that you've struck upon there - with DD2 having a weight gain (yay)but her (or rather the ED) 'playing' you to keep the gain as small as possible. I do think I have to treat the illness as manipulative - it is manipulating DD as well as us. But it is such an uncomfortable dynamic to be thinking about in terms of your relationship, it is horrible to be always trying to work out if there is an angle you're missing...

princes - how is DD doing? I do hope you hear something soon - your DD sounds similar to mine in terms of weight loss/time period. Am glad she's doing okay at school - whilst it won't 'mask' everything, perhaps it is serving as a useful distraction? Have you spoken with school about whats going on? Our school have been brilliant - can't fault them at all but I know we may well be lucky there.

Glad things are moving in the right direction girlie and I agree with you - the healthy weight band is really quite a stretch isn't it.

DD is still in hospital but has kept to her meal plan (food and fortisip) since coming off the tube and is now on meal plan 5. She's had a bad couple of days though emotionally, partly down to two bad nights of sleep. This morning's weigh- in saw a gain which has made her retreat into anorexic thinking again. While the gain is a tick in the box towards discharge (which DD wants) she's unable to see it that way - such is the hold that this illness can have over our DC.

DD wants to cook dinner for DH and I when she gets out - I can't decide whether this is part of her brain trying valiantly to wave a flag at her to remind her of food, or some sort of vicarious cos-play around food.... does anyone else's DD watch loads of Youtube/TikTok stuff about food?

Hello all. Hope everyone is ok.
I remember going through similar feelings around tube feeding @myrtleWilson, but actually whatever helps, right?
My daughter moved into student halls at the wkend and it's been really difficult since, which is as I expected. Lots of difficulties with eating - she hasn't eaten in front off people since this all started, apart from her immediate family, so this was always going to be a challenge. I suspect the other students will guess she has eating disorder, shes very thin and hardly eats . Hosp appt yesterday said again about BMI and admission if she cant turn a corner. On one hand there is so much progress- at least she eats something, and other ED behaviours have diminished a little, but in other ways progress is stuck, still have to weigh/measure every bit of food, won't eat many types of food, struggles to eat in front of people etc.the ED is such a dominance in all aspects of her life. It's all such a worry, but for her the ED isn't going away and she needs to find a way to live with it as normal live as us possible. Lots of tears from her, just gotta keep supporting her as much as possible I guess. I really hate the ED, it's like a thief that's stole her life ☹

That's good that your dd is sticking to the meal plan myrtle are they telling her her weight? If it's a trigger for her maybe blind weighing would be better? I'm not telling my dd her weight as she doesn't need to know and I know it just stresses her out. The little bugger did jump on the scales at pets at home the other week though (the ones meant to weigh dogs!!)

It's really common for people with anorexia to be obsessed with food and want to cook. I personally would not allow her in the kitchen at all and would discourage her from looking at food online. It just feeds the ED and will do nothing for her recovery. I watched a really interesting talk on brain biochemistry and anorexia on YouTube which is well worth a watch if you get a chance. It talked about experiments that were done during the war where men were deliberately starved (obviously completely wrong and unethical) but what the researchers found was that the men all became completely fixated on food to the point it was all they could think about.

My dd is okay, I'm not entirely convinced she is eating all her food at school but she does eat what I put in front of her at home including some very calorific puddings. I dread to think how much weight I'll put on helping dd get better!!

I'm back at work now which is okay, work have been really supportive.

How is everyone doing on here @Girliefriendlikespuppies @TheySeeHerRowling @princesrules @Bluebuddha10 @troppibambini @angleseyllama @minnieok @clopper @ClassicHummus

DD came home from hospital on Wednesday, we had CAMHS on Friday - am not sure about the family therapy at the moment (although only had one session) it just seems a bit meandering....

DD not going back to school yet - she's just not up to it but school have been great and supportive.

How is your daughter getting on blue - grappling with and ED, going to University and being confined to halls/home must be a struggle...

Thanks for asking, Myrtle, I hope your dd is coping with being out of hospital

I've also been thinking of BlueBuddha's dd, with the very-much-less-than-optimal situation for students Just horrible and worrying for everyone concerned, let alone those with existing MH issues

I was so dispirited this morning - dd2 has lost the tiny amount of weight she had put on DH mentioned that when he was in her room putting up some shelves earlier in the week her laptop suddenly started broadcasting a Youtube that opened with 'And here's another great workout you can do in your room without disturbing anyone' - so pretty obvious how that tiny gain was lost again

However just now she has spoken tearfully and honestly about how going back to performing arts yesterday and seeing the reactions of her friends and teachers - who hadn't seen her since March - has made her realise how badly she has lost control

I don't know if anyone said anything to her, but I'm very grateful if they did I feel that dd2's ED was triggered by lockdown and the loss of everything she lived for day-to-day (she's a very social animal with tons of hobbies and interests)

Now that she is able to pursue those hobbies again, she wants to be 'normal', like her friends - I hope and pray this will be enough to get her out of the pit

Good thoughts to all of you

We're okay I think, dd is not great talking about her feelings so it's hard to know in all honesty! She does eat what I give her so that's good.

I'm finding being back at work tiring though, I fell out with dd tonight as I asked her to help me with a few chores and her attitude was terrible 🙄 not sure if that's ED or just being a teenager!!

Did anyone watch the Freddie flintoff documentary? I watched it quietly as dd was in her bedroom, found it quite sad really. Also made me realise that literally anyone can suffer with an ED.

Also I've not heard anything from Camhs, am I meant to have to chase them constantly?! And am I meant to book dd into the weight clinic? She's not been weighed for over two weeks now.

Hows everyone doing? My daughter has now tested positive for covid, so I have brought her back home cos she feels really sick with it, so affecting her eating even more. It's only me here , and I work from home anyway so it made sense. Her weight is so low that she has a weak immune system and a weak heart so this is worrying. But so far it seems manageable, just hope it doesn't worsen. In the past a normal stomach bug has landed her in hospital for 3 weeks so do feel concerned but fingers crossed xx

Oh God that does sound worrying blue is your dd still getting support from an ED service?

I'm really concerned that my dd is not eating at school, she's also decided not to wear a jumper to school which I think is a way to make herself deliberately cold 😕 Camhs and the school are useless, feel completely on my own with it all.

Gosh blue that is a worry - it has been one of my concerns with DD that her heart rate is so low that I've been worried about impact of covid.. I hope she makes a swift recovery and I entirely agree home is the best place for her.

theyseeher - am glad that she was able to talk with you & be honest about the lack of control - fingers crossed.

girlie am so sorry you're feeling all alone... and that CAMHS aren't responding. We now just ring if we need to so I wouldn't be backward in chasing them (not ideal I know).

Hi @DayB1Day - welcome to the thread - I've just read your other thread too. Am so sorry you're in this position.

From your other thread it sounds like your DD was admitted with re-feeding syndrome? If you read my posts up thread this was the same position I was in with my DD.

Was your DD discharged with an eating plan from hospital? Mine was but isn't keeping to it - we can't 'enforce' it but try to keep the time around mealtimes a distraction - so we watch a movie or similar. The hope is that this takes off the focus on the food element.

My other advice (but am in no way an expert) is see if DD can externalise the condition. This has taken a while for us but we now talk about how the anorexia is seeking control of DD, not that DD herself is doing this. We've also tried to reinforce that she deserves happiness and it is the anorexia which is seeking to keep her in an unhappy place. I guess the idea is to try to offer and open a path back to happy thoughts and activities.

It is a tough road though and I wish you every success.. I hope you may stick around on the thread - I've found it a useful support since I started it a few weeks ago...

Hi Day that sounds really stressful, have a look on the FEAST website, there's an excellent forum on there called 'Around the dinner table' with lots of experienced parents who can help with practical tips on feeding.

Have you read the Eva Musby book? She also gives lots of practical advice around getting them to eat. How old is your dd?

From what I understand you keep trying with food, put it in front of them and sit with them until it's eaten. You want to stay calm but completely confident that they will and can eat it. You don't get into any conversations about the food itself, you don't negotiate and you don't react to any of the 'behaviour' the anorexia throws at you.

My dd never got to the point of not eating at all or needing hospital but had severely restricted and was doing ridiculous amounts of exercise. We are slowly getting there but it's been a bumpy road and we've still got a way to go.

Have any other posters dds had OCD type behaviours as well? My dd has developed certain rituals especially when we take the dog out on his regular walk, she has to touch a certain sign, walk a certain way etc.

Day can you ring the ward for advice? If your dd is not well enough to be home it may be that she needs a longer admission.

Am so sorry @DayB1Day - it is awful... I don't know what its like where you are but in my area I think I'd struggle to get admittance to paeds ward unless through A&E. I agree with girlie about ringing the ward for advice.

Did they give you a discharge meal plan - if so what calorie level was that and what is your DD managing?

Did you get any meal supplement (fortisip) to take home?

Ring CAMHS on Monday and see if they had their MDT meeting and what the support package is for your DD. Here, we have weekly meetings and DD has been admitted to hospital from one of those meetings if they think her observations (particularly blood pressure and postural drop) are out of whack.

Keep chatting though - we'll try to support you all we can

I'd ring the ward as well DayB1Day - sounds like they would want to know

CAMHS are really good and easy to get hold of here, but I know this is a total postcode lottery and I'm sometimes shocked at the hard time people have getting help for their very ill children

Not much change here - dd2 still insisting that the worst has passed and she's seen the light etc but somehow 'forgetting' to eat when I'm not breathing down her neck