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...

Thankfully (?) DD hates how she looks now. Her body is childlike and frail (at the start of all this, before we knew the extent, her dad told her she “looked like an 11 year old” which devastated her), and she has the lanugo hair on her arms, stomach and back. She wears lots of layers and thick fleece
lined leggings to try to make her legs look better.

We’ve also successfully ‘named’ the Anorexia (read that here!) Anorexia is Maude. The hateful bitch that wants DD sick. We can say “That’s Maude talking, not DD, I want to hear from DD”

Maude also doesn’t want DD to drink milk. That’s our biggest battle. It takes her about an hour to get through 200ml. She says it’s a “waste“ when she could be eating something better, but then can’t give me any suggestions about what she would have instead - She’s full of “I could have a bacon sandwich, or a chocolate brownie” but when I say I’ll make them she freaks out.

The only things she’s consistently good at are yoghurts (Muller lights only) and chicken salad sandwiches (Sandwich thin, no butter). Every other meal starts with “I’m scared, is this enough? Is this too much? I’m full)

It’s so tiring

(DD was a sportswoman as well @Lottsbiffandsmudge but sadly has no energy now. She wants to go back to training with the team next week, but CAMHS aren’t going to let her)

Thanks all. But of advice. DD as I said ate all her meals without complaint until we got wise to her limiting and got her referred to CAHMS.
Now she is on an eating plan (based around my meals with 3 snacks a day and 2 nourishing drinks (basically milk as she won’t drink juice and never has) she has started to refuse some meals. So for instance she is kicking off about sausage and mash planned tomorrow but she happily ate it 3 weeks ago before diagnosis..... is this usual? I seem to be going backwards with the sorts of foods she will eat.

@Lottsbiffandsmudge

Thanks all. But of advice. DD as I said ate all her meals without complaint until we got wise to her limiting and got her referred to CAHMS. Now she is on an eating plan (based around my meals with 3 snacks a day and 2 nourishing drinks (basically milk as she won’t drink juice and never has) she has started to refuse some meals. So for instance she is kicking off about sausage and mash planned tomorrow but she happily ate it 3 weeks ago before diagnosis..... is this usual? I seem to be going backwards with the sorts of foods she will eat.

I suspect the reason why “happy” to have eaten a few weeks ago was purely because of what she’s eaten earlier in day and the previous day ie in her view she had eaten lightly / lower fat / done more exercise

Whereas perhaps this time - she feels she hasn’t compensated sufficiently for such a meal.

I’d put money on this being the base

It may be worth you keeping a discrete diary to chart what she is eating and her mood. And I think you will see a pattern emerge when it comes to how happy she is to eat the higher fat meals

Was she eating it all previously lotts or did you assume/believe she was eating it all? My DD seemed to eat a range of foods before being admitted to hospital for re-feeding but in reality she was making herself sick, exercising obsessively to counteract the calories. Once in hospital she was managing to hide food and dispose of it (the nursing staff didn't notice, nor did we...)

Am not sure if it 'usual' to see restrictions - but it has been my experience to date and at times when the ED becomes very strong even more restriction may be introduced - both in terms of what is 'allowed' to be eaten and the way in which she should eat it -DD (via the ED) has rules that she can't break - which includes how small she cuts up food, how she shouldn't finish everything on the plate as the ED tells her she is 'greedy' - even if the food on offer is something like grapes or carrots.

Thanks both. DD was exercising compulsively and so that is probably why she was ‘happy’ to eat that meal.
She has just been on a bike ride with her dad and brothers and has had a major meltdown (still going on an hour later) about not going far enough or fast enough. A bike ride is on her plan today but clearly she has parameters which constitute ‘enough’ exercise even on this reduced plan.
She ha snow missed snack and we are running into dinner wh;inch she is threatening to boycott as I wouldn’t let her out to do more cycling (as it was dark & she was cross and had already been out too long).
She has not made herself sick so far. She was genuinely surprised that that was a question on the ED questionnaire. She is only just 13 and I don’t think it had occurred to her.
The dietician said she needs to stay out on inpatients if we possibly can as she may get exposed to things she has not thought of is she is with older girls.
This whole thing is a total nightmare. I understand why she can’t have CBT until she has her weight up but it seems so hard to get her to eat and restrict her exercise without that sort of support. All we have had so far are to distract or do breathing both of which seem wholly inadequate to deal with her daily tantrums and meltdowns.
If I have to say ‘I am so sorry you feel this way’ or ‘I can see this is so hard for you’ one more time I may explode.

Lots I can relate to everything you've said in your post!! Ystd when dd was in full melt down mode I remained (outwardly) calms can kept saying 'I know how hard this is for you/I can see how awful this makes you feel' which just seems to wind dd up even more!!

Today has been a marginally better day, it was my mums bday so the focus wasn't on dd (we're in a bubble with my mum). She ate most of what was on offer without too much complaint including some bday cake. But is still refusing snacks and milk 😕

I'm sure ystds melt down was based around dd feeling like she hadn't exercised enough. What confuses me no end is that if dd ate enough food she could do as much exercise as she wants!! It makes no sense to me, dd used to be very active and liked running, horse riding, football, the gym etc and all of that has stopped because she's not eating enough.

DD no longer sees activities as 'fun' but as a means to burn calories. Last year she would have loved a muddy ride with her dad and brothers but now it didnt burn enough cals so it didnt 'count'.
I agree there is nothing rational about it. My DD is currently eating but is starting to use not eating as a threat to try to get more exercise. She continues to secretly exercise when it is not on her plan.
Hoping tomorrow's psychiatrist appointment will not see her put in hospital....
Glad you had a better day Girlfriend

Your dds mindset sounds identical to my dd lots 😕** although my dd used to enjoy exercise if she had a day on the sofa that was also fine - now if she had to stay in all day she would have a breakdown!!

It's tricky now with the schools being off indefinitely as I'm not going to be able to supervise her as much, my plan will be to make sure I'm here for lunch at least but she will be taking the dog out on her on...

Bollocks. Full on meltdown tonight. She hates being off school. Plus she’s already freaking out about “looking fatter when we go back and everyone noticing”

Honestly, how much bloody more?!

DD1 went to bed very confused. We had a long phonecall today about returning to school on Wednesday. Now, we have no idea. Special schools weren't specifically mentioned and last time, even though all the children have EHCPs, they shut completely.

I'm really frustrated about the schools closing again, it was the schools closing the first sodding time that caused the ED imo.

It's also going to be tricky with work, I'll have to talk to my boss as will need to come home every lunchtime.

Weigh day tomorrow 😕

DD is terrified. Took me an hour to get her off to sleep last night stroking her head and doing breathing with her. She said she has no idea how she is going to survive this new lock down.
The first and second lock downs are what started this when she lost her football and didn’t know what to do to replace it.
Also weigh day for us today
Best wishes to all of you and your DC

Thinking of you all today. No idea what DD1 is doing yet.

Weigh day for us as well.

Milk is causing an issue this morning. If I continue to insist she has 200ml of whole milk as a separate drink to the skimmed milk she puts in teas and coffees then she will restrict her snacks. The look on her face when she said it was just... ARRGGHHH

I am getting so fed up with her. Everything is a battle, every damn thing. Every time I feel hopeful something little like this puts me back again. DH isn’t helping either, he just gets shirty with her and threatens her with the hospital.

Sorry. I should be in school this morning but won’t get there till lunchtime. Means I am leaving a shit load of work to a colleague and whilst she is bloody lovely and understanding, it’s unfair on her and, frankly, she won’t be able to do it all. This illness is so bloody selfish.

Sounds like so many of us are having tough times at the moment. It is such a challenging illness and as parents we are on the front line for every minute of every day. There will be better days ahead.

Hope that those with worries about lockdown are well supported... because we've been basically in our own lockdown it doesn't feel that different to us but sending to all those that need them.

We had weigh in yesterday - first in over three weeks. She's gained about 1kg which ordinarily she would have freaked out about but her nurse took time to speak with her about how she was feeling about the gain and DD felt less wobbly afterwards (plus she told me later she's not been to the toilet for two days so some of that gain may be 'artificial')
Each meal is still a struggle and self harming is continuing. Plus she's so tired all the time - part of this is poor sleep but I've also read that as you take on board more nutrients/calories the body uses that energy to repair damage and so her body is working over time, hence exhaustion. Does anyone know if this is true?

We've got CPA tomorrow

No weight gain here after 2lbs last week. I cant help but feel deflated. No loss though I guess.
Not sure about the nutrients going into repair but it seems logical.

A small loss here 0.4kgs, she is just 52kgs now. Tbh I thought that wasn't too bad given how much she has been restricting and that she hasn't had any snacks for ages now 😕 I was anticipating a bigger loss.

The nurse didn't tell dd her weight but did tell me which meant the min we were outside dd was on at me to know what the weight was 🙄 I kept it neutral and just said 'about the same' and moved the conversation on.

Dd has been very annoying today, smirked when I said how difficult work is going to be with her being off school, smirked again when I told her she needs to start eating snacks.

Honestly feel like screaming at her sometimes!! Yy to the illness being selfish, literally the only thing dd cares about is keeping the ED happy 😫

We have a face to face Camhs session tomorrow, first one in ages. I'm really hoping they lay down the law to dd.

Myrtle meant to say well done on your dds weight gain!! Has it been discussed about telling your dd her weight? I actually don't see any benefit to them knowing until they're in a much better place mentally 😕 I appreciate it's a complex issue though and there are pros and cons to telling them or not telling them.

I take my hat off to you keeping your dd at home, you've all done so well.

Hope CAMHS goes okay girlie - we have our CPA via teams which I'm pleased about to be honest - am quite anxious about Covid at the moment.
Re knowing weight - we did discuss with DD and separately with her care co-ordinator. The co-ordinator's view was that DD would project her own impressions/made up ideas into the void and there's a risk that a realisation of a gain over several weeks with her move to adults looming and the shift in care may put DD back right at the time we'd need that like a hole in the head.

How did you get on today Eve, no loss is good news lotts

Phsichiatrist has prescribed an anti psychotic to help reduce DDs anxiety and intrusive thoughts whilst she tries to gain weight. She wants to gain weight and is trying hard to resist the obsessive exercise but at the moment DH is dealing with a meltdown as my DSs (16 and 15) are exercising and she is not allowed to.... I cant have them putting their entire lives on hold. DS2 has just found out his GCSEs are off and DS1 is melting down about on line school and I dont feel I have any energy for them. And we have months all coped up together. What do others do with siblings? I feel so bad for them.
DD wanted me to sit with her all day through on line lessons. Supposed to be working from tomorrow no idea how that will go.
Also I've got to tell her at some point that her 1 to 1 football coaching can't carry in under new lockdown rules. That is going to be the final straw.
The psychiatrist said the medication will help her sleep which would be a blessing.
Hope everyone has a better evening than last night...

Ps I was told not to tell DD weight but give her the trend. That was another meltdown this am....

DD1 has put on 0.2 kg. I'm trying not to use my nursing knowledge that it's probably just a big poo

DD has lost 1LB, so she’s now 39kg. Haven’t told her. Could see the staff looking shifty at each other. They said that it was good we were in lockdown as at least it means everyone is missing school...DD didn’t seem to get the inference.

New eating plan is in and only difference is the addition of 2 slices of bread with spread, rather than a plain sandwich thin. Even that will be a battle. Really don’t want the battle tonight.

So we've got DD1(15) home from school now for the foreseeable. Special school are opening 'only to the very most vulnerable'. She ate fairly well today, and the last 2 days, so I'm hoping we might see a bit of a jump in weight, although I guess it will depend on her metabolism. At least she won't be burning energy because she's freezing in school and doing PE.

Lougle - I'm glad I'm not the only one that factors in the last poo in terms of a weigh in, a poster upthread who hasn't been around for a while had a DD whose illness was really serious and the DD was sewing weights into her knickers etc to fool the scales....

Eve - the battle is really really tough - honestly, about 5 years ago began a two year period when my mom was diagnosed with and died from cancer, my FIL the same, one of my younger sisters the same and then my other sister was diagnosed (but treated successfuly - so far) I thought that was the worst period in my life but hands down, anorexia kicks everything else into touch. I'm ashamed at how little I really knew about the reality of supporting someone with anorexia - especially a child. It is the most relentless, unforgiving, uphill battle with no sense of when you know you're on safe ground ever. But and this is a big but [I cannot lie ] there remains moments when your DC comes back to themselves and to you. DD exploded at one point today and told us that the anorexia cares more about her than we do, she was furious. Then minutes later she was in tears saying how sorry she was for upsetting us and how awful she was for saying mean things. The ED is a tricky opponent, you can't fight it - because it has meaning for its 'host' - your DC, you have to smother it with love really - and sometimes, sadly, even that won't be enough...