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...

DD1 ate 3 meals yesterday and today she ate a reasonable amount of her Christmas dinner. I'm still wondering if she's an 'emotional eater' rather than deliberately restricting. We managed to keep her out of her room/off her tablet most of the day yesterday.

Today, she was incredibly stressed before we went to her grandparents, because she'd have to mix with her cousins. But she wasn't too bad once they arrived and she remarked that 'she thought her brain would tell her not to eat, so she ate more than she thought she would.'

Weighed her today. 37.1kg. So she is still losing weight on our scales at least.

When is she next getting he’d obs done Lougle?I’ve booked an obs session at gp on Wed. Predicting weight loss but hoping other obs won’t be as bad as they have been. Got meal support tomorrow. Starting to slide, going to throw everything at getting back on track but she is so hard to mediate with. I try talking like the meal support and she tells me to stop copying them as it’s annoying. Sometimes she just refuses to start eating. With meal support they’ll be firm and she’ll start a tentative nibble do they can distract.Any tips on what to do when they point blank refuse to start eating?

Dragging everybody out on a walk, a whole other battle.😩

She's just going for a weight with the dietician on Wednesday (last weighed in November). No other obs. Not sure the dietician knows what to do. She's emailed consultants, but whether they will be interested enough to pick DD1 up is unknown.

I’m sure you can request all the other stuff with the gp yourself. I’ve done that in the past. The nurses do the same obs as when the EDT request it done.

Lougle you need to ask your dr to refer your dd to the Camhs ED team and to do her BP, pulse and bloods on her. It doesn't matter what the reason is for her starving herself the point is she is doing it.

Things have gone totally to shit here 😭 Dd is back to where she was in the summer, refusing snacks and drinks.

Mentally she's really not good as well.

I'm so fed up ☹️

The dietician mentioned that the GP had written that he was willing to refer to CAMHS, so I think she was going to phone him to say 'do it'.

How's everyone doing?

Things remain pretty shit here tbh, I've sent an email to Camhs explaining what's been going on and am hoping they can offer some more support. Our next meeting is on Wednesday.

I'm feeling really disheartened, the thought of going through the whole refeeding process again makes me cry. Dd is in a worse state mentally than she was last summer and now knows a few new tricks 🙁 I had a really low day Ystd and had to keep going off to have a cry. I just miss the old dd so much, we should be doing some nice things this week but instead it's going to be purely about food and getting dd to eat it.

I've also decided that dd should not be told her weight, I'm sure we're in this situation now as a direct result of her being told she had gained a small amount of weight about a month ago.

Do all your dds know how much they weigh?

Hi everyone
Hope your appointment on Weds is helpful lougle

girlie - we're in a similar boat, this is our third re-feeding stint since August and its incredibly tough going. DD is trying but really hates doing it and is in a vice like grip of the anorexia. Self harm is continuing and she's exhausted. My worry is that we'll reach a point that she can do no more and will restrict again. We have our next CPA in 1st week of Jan and realistically am not sure what more support we can have in community. We've had daily calls from CAMHS over the Christmas period, have had to call the crisis line a couple of times, came very close to admitting her to the ward on a couple of occasions.

Re weight - we think we won't let DD see her weight moving forward but will give her a general trajectory every fortnight. However, we know that the absence of seeing the number will not be a panacea as DD will project into the absence.

It sounds so terribly difficult for you both and your DC. How quickly are they expected to gain?

DD1 is confusing. Ate hardly anything at dinner last night, feeling unwell, but this morning she wolfed down Scotch pancakes. Although she hasn't then eaten anything for lunch. I think I need to ask them to think about whether there could be a physical reason why she's losing weight/eating less? So puzzling.

Hi everyone. I hope you don’t mind me posting on here but I just wanted to give you all a virtual hug and a high five for the incredible support you are giving your children.
I had anorexia in late teens an early twenties and I’m ashamed to say I put my poor parents through hell. So much of what I’ve read on here resonates with me. However, I wasn’t really me if that makes sense? It was definitely the ED that was dominating my thoughts that made me behave so horribly towards them. But I assure you , throughout it all I completely loved my parents. I was just too ill to show it. I just wanted to let you all know that. Sadly my parents are no longer alive but I couldn’t have done it without them.

Best wishes to you all

Hi @Lougle, any chance she might be purging after binge eating? That's the cycle we're in here at the moment.

I'm so tired. Was up with DD last night until 3am as she beat herself up for not doing enough to get over the eating disorder. This break from routine and her MH support over the holidays is so rough. And if school doesn't go back it doesn't bear thinking about. 😰

@Fefifofaff no chance at all. I don't even think it would occur to her that she could make herself sick to get rid of food.

[quote Lougle]@Fefifofaff no chance at all. I don't even think it would occur to her that she could make herself sick to get rid of food.[/quote]
How old is your daughter?

Those asking if their daughters should know their weight, it depends.

If they are entirely on board with recovery, then is can be a motivation to see small increases.

If not fully on board, keep any and all scales away from them.

@Sup1979 she's 15 but has a learning disability, so more 7/8 in terms of cognition.

@MrsGrindah Thank you so much for your post - it made me well up. Firstly, am so glad it sounds like after some tough years, you have recovered from anorexia - that is amazing! Secondly, it was so heartening to read that you still loved your parents throughout but were too ill to show it. With my logical head on, I know when DD is berating us, being mean etc that it is the ED speaking and not her, but holding on to logic in the eye of the storm is tough and my heart has broken many times by what DD is saying (but more times by what the ED is doing to her).

Thanks so much for popping by and I hope reading the posts hasn't triggered any difficult memories for you.

Am so tired of this, DD's head banging off wall self harming has gone from occasional to regular to today where we had it at three different meal moments (one meal was in the car so was exempt). No meal support this week but care leader is doing a catch up with DD tomorrow. But I honestly don't know how we can get this into a manageable position in the 13 weeks till Dd turns 18

Oh myrtle that sounds so hard, I had dd head banging a few times and it was so distressing.

We've had a mixed day, was let down again by Camhs this morning as her caseworker was ill. I put in a strongly worded email and a lady rang me this afternoon, she said they were trying to put a better support package together for dd. She also said they would refer dd to the peads team and the dietitians which is good.

I've been back on FEASTs forum today as well for some support and advice.

Myrtle can you get CAMHS to hold on to her for a while longer? I know that often young adult cancer patients are still treated on paeds wards.

Is she head banging out of frustration with herself, or anger that she has to eat? It's very distressing, either way.

DD1 had her weigh in today. 37kg. The paeds Sister asked 'who DD1 was under' today and looked very unimpressed when I said 'no-one'. I explained the 'care' DD1 had over the last few months.

The dietician is going to give DD1 Calogen extra shots to try. She acknowledged that last time she said she'd ask the GP to prescribe, she hadn't, but promised to do it straight away. She's also going to put in an urgent paeds referral, as she hasn't had any reply to the email she sent out.

I think the dietician is perhaps out of her depth, though, because when I said 'she's grown a cm in the last month', she said 'oh I didn't even look at the height....' but BMI is based on height and weight, and even the centile graphs use both, so it is odd that she didn't note it.

Happy new year to you all!

How's everyone doing?

Things are not great here but could be worse, dd is slowly reducing more and more 😕

I'm at the point where if they (Camhs) suggest admission I'd be relieved, all the things that worked previously to get her to eat are not working this time. It took 2 hours to get her to drink about 150mls of milk Ystd....

I reckon she's probably getting around 1000 calories ish poss more like 1500 on a good day. So easily less than half what she should be having 🙁

Sorry to hear that, @Girliefriendlikespuppies When do you next see CAMHS?

So sorry to have gone MIA - tough times here.

Lougle - I had hopes for your dietician but not chasing up the supplement order etc is a bit of a worry. Am glad though that the Sister raised an eyebrow - the more you get the sense that the 'system' sees what you think you are seeing it helps. Have you now got the supplement? What did DD say if anything about her weigh in experience?

Girlie - sorry to hear that DD is restricting further. Is there a pattern to when she's restricting (a particular meal, or particular food?)

fefi how are things with you now?

Here the anorexia is super aggressive, DD is self harming pretty much before each meal and sometimes in between. We use the ice cube technique to try to ease it which seems to be working - but her bruised forehead and the signs of bruising around the eyes do make me worry for what damage is being done. On the positive side, CAMHS are being awesome - since pre Christmas we've had/now got in place

• daily call from on call support officer *at least twice weekly meal support (plus one of the nurses volunteered to come out yesterday to do an extra support)
• a new team in place to deal with the self harm - who will visit etc
• weekly 1-1 motivational
• weekly family therapy *weekly observations as per normal
• we ring the crisis line at least once per day and don't see it as a failure

Plus one of the lovely nurses today (the one who volunteered to do a meal support) rang in off her own bat to see how DD was doing and ended up doing a pre dinner call with DD and offered to keep her phone on for supper (7.30pm) which we needed and she did over the phone supper support - she should have signed off at 5pm. I know CAMHS are variable, and there is a thread on here with really dreadful tales of experiences but by and large I think we've been incredibly lucky - although I do think the Big Ticking Clock for 18th birthday plus DD's regression has meant we're having the kitchen sink thrown at us.

DD is trying so hard but this is immensely difficult - each day seems like Groundhog Day but only worse... But, onwards we go!

Oh! lougle - I will ask CAMHS re post 18 support and see if there is any wriggle room but a couple of months ago I got the sense this was a no, but maybe if they think DD could turn the corner in a couple of months (not recovered - but on the brink of recovery journey) they may be able to be flexible... am not holding out hope but will ask...

myrtle I take my hat off to you keeping your dd at home, did you mention that a residential inpatient unit was a possibility? In all honesty I don't think I'd be able to cope with my dd struggling as much as your dd is, I'd want to hand the responsibility over to someone else - in fact I would do that now with my dd if it was offered!!

That probably makes me a rubbish mum but there's only so much time and energy you can keep throwing at the ED before it seriously starts to affect your own mental health 😕

I also think dd would respond differently to someone else in authority telling her to eat than she does to me.

I don't know, it's so hard isn't it 🙁

Lougle next Tuesday is the next weight check and Wednesday is the next session with her case worker.