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...

Milk shakes or hot chocolate are good ways to get milk in not that my dd would drink them my dd finds it easier to drink milk through a straw for some reason.

I found it hard to find 200 calorie snacks that were acceptable to dd, muffins and flapjacks used to be good but she won't eat them now.

I'm hoping dd will still gain weight just more slowly, today she's had porridge made with double cream and a small smoothie for breakfast.

Lunch was two slices of cheese on toast with ketchup with a small amount of yogurt and a small orange juice.

Dinner was rice, lentil dahl and naan bread which she ate around 90% of it. Pudding was a chocolate microwave pud with cream (again ate around 90%)

I'm hoping she'll drink some milk later...

Does that sound about 2000 calories? That's what I'm hoping for 😕

Was a lot easier not to worry when she would eat snacks and milk and biscuits in the evening!! I think what's helping now is that dd is spending a lot more time sat on the sofa, other than the one dog walk a day she's not doing any exercise.

without knowing the portion sizes its a bit hard to say girlie but for comparison - here is an example of DD's 1800 calorie per day

Breakfast - MS porridge pot - 256 calories
Mid morning snack - 200ml of strawberry milk and a hob nob cereal bar - 250/260 calories
Lunch - 3/4 tin of Amy's French country soup, oat bar, 1 1/2 plums - 380 calories
Mid afternoon snack - coffee plus Nine bar - 250 calories
Dinner - 100g roast parsnip, 3 fish fingers, 25g pasta (uncooked weight) - 380 calories
Supper - 220ml of hot chocolate milk and a boka bar - 250 calories.

I'm aware that this is just food rather than proper meals but it is what it is at the moment and DD has (as you all know because you cheered with me) started to eat pasta again and has agreed to include vegetarian sausages/burgers and home made chicken goujons and possibly a custard pot in the coming weeks so we are slowly tackling her massive list of fear foods.

We also swop in other cereal bars, raw carrots, other fruit and yoghurt

The Nine bars are a recent find and super good calorie wise (mind they're not cheap) and the Amy's soup range also has some good options in terms of calories - the French country one has 380 calories in entire tin - again not cheap.

If she's allowed to go on a 45 minute walk we put an extra 200 calories on the day before - so sprinkle some pumpkin seeds in her breakfast - 10g will give us easily 44 calories

We had another rubbish day.

Hospital visit and she’s lost weight, health being compromised again. Wanted to admit her for the 4th time but paed kindly gave her the weekend to have hospital at home. Deal was she followed the plan and they’re ringing Mon. If not following she’ll be going in. Has been horrendous since. Lunch a nightmare. Was told to f*k off twice.Had meal support for tea who was lovely and put up with my tears. Only 6 pieces of pasta and a bit of custard.In the mayhem I forgot her CP appointment. Sessions have already been pushed back to fortnightly. It could have made all the difference. Texted and asked if she could have the last 20 minutes. No joy. I cried again. Now feel so guilty and cross with myself on top of everything.

She’s so in the zone thinking hospital inevitable. She thinks we’re conspiring to send her back. Just don’t know how to break through to her.

It’s going to be a long weekend.

Oh @Scr1bblyGum I do hope the weekend isn't as awful as you think it might be. Hugs and strength to you.

Oh God I’m so sorry @Scr1bblyGum
Sound like a bloody nightmare, I can’t believe they wouldn’t let you have the rest of the appt, they really aren’t supporting you well at all.

The meal support team(only face to face either of my dc have ever had from CAMHs)and Family Therapists are fab, they put some of the highly qualified professionals and managers to shame frankly. I’m starting to think the lack of face to face is distancing the higher up CAMHs staff and they really aren’t getting need or seeing kids on a human level. Honestly if you knew the half of it. I’m beyond angry re my other dc. Shocked dismay would be a more accurate description.The handling of his case has been appalling.

Can anybody tell me where individual therapy fits in re supporting kids to eat. She really needs somebody to help her know we’re not all conspiring against her and to get her though the barriers stopping her from eating.The individual therapist doesn’t focus on food but “ low mood” the most annoying, patronising and dismissive phrase known to man. Therapist has reduced her sessions to fortnightly as felt she is managing fine.Errr big meeting called 2 days before she made that decision and an imminent 4th hospital stay kind of indicates otherwise so I’m more than a little confused.

There are now mutterings of specialised units. Surely it’s worth some proper individual eating therapy first. When does that normally happen?

Dietician sent us on our way with the helpful advice re the weekend of making sure we get milky drinks into her.An anorexic child with a dairy phobia who scraped off every shred of grated cheese from the 6 pieces of pasta she had for tea. That’ll be easy then.

You're having such a tough time Scr1bbly

We have the following support packages - I'll describe each one as I do wonder whether the services are termed differently in areas.

Family therapy with Dr and Nurse once per week - we get homework to do each time, either thinking through issues or practical activities (eating a snack outside, Dd physically saying "I have an eating disorder". They seem to be trying to get Dd to unpick why the eating disorder has latched on to her, what is it offering her and could she get that affirmation from other activities. Feels positive in addressing root causes

Meal support twice per week (although only once last week - presuming operational staffing issues. At least one of the most difficult meals will be with support provided by DD's care coordinator.

1-1 motivational therapy for DD with her care coordinator community nurse. They work on how to manage the eating disorder in the moment, explore distraction approaches and some work on motivations to eat, challenging dd's belief she's not unwell.

Care coordinator will be in text contact with DD most days

Intensive home treatment team - up to 3 x 1hr sessions per week (including one today and one tomorrow) this focuses on self harming and is developing a self care and wellness plan.

Observations fortnightly

Dietician fortnightly

6 weekly - CPA review with consultant, care coordinator, dietician, iht, community nurse

I don't know if the bit you feel you're missing in your care package is identified in my list? All of ours aside from iht are virtual but that's at our request as the thought of doing this with covid terrifies me frankly.

Have you googled what the SEDU near you would be like? We've had it mentioned to us and tbh at times I would have jumped at it. At the moment we are still mired in the thick of it but we are learning bit by bit how to manage the ED even if we're still a long way off recovery..

We get FT once a week, meal support 2 or 3 times depending on need, individual therapy for “ low mood” fortnightly.

Individual therapist keeps saying we’re getting loads of support and it’s unusual for her to be getting individual therapy at all at this stage. Makes me feel so guilty that we’re getting loads but not making it work.

I’ve just rung crisis for EDT number( realised I don’t have it)as she was kicking me when I tried to get her to eat. Took phone as worried about Til Tok etc then had chair throwing.

I just want to make this weekend work and keep her out of hospital.

Scribbly it sounds so stressful, I think with myrtles team it sounds like they all work together with the family and child very much at the heart of it. With your team it all sounds disjointed.

I think if your dd does end up back in hospital try not to see it as a failure, I think we are all way too hard on ourselves when what we're dealing with is a complex illness that is incredibly difficult to treat.

We got nowhere with milk drinking again last night 😕 did get a phone call from the ASD team offering some CBT for dd, that's going to start next week. I'm praying it helps get dd out of this current rut.

It is disjointed. The GP nurse commented on that last time we went for weigh in and apologised for it.

Don’t think we even have a care coordinator. I bombard the family support worker with questions that are probably not even his remit.

Scr1bbly that sounds so challenging - no wonder you missed the session with so many different and irregular things to juggle. Don't feel angry at yourself.

As someone who is new to all this and has only had an initial consultation, the different things on offer seems bewilderingly complicated. Reading myrtle's list made my head spin. Is there a gold standard written anywhere that I should have in mind when we next go in (Wednesday week)?

We are at an early stage and only have a dietician call once a week via Teams (but she is a specialist ED dietician with 15 yrs experience in in patient and community work so is really more than just a dietician!). We have had one face to face with a psychiatrist who listened and then prescribed meds. She calls me once a week to check on dosage, side effects and discuss possible changes in meds.
That’s it for now. Although the dietician is very responsive if I have questions.
They have now written to GP for them to do some physical tests (ECG, bloods and stool test) as they have not been involved to date....

Valley there are NICE guidelines on treating EDs, I'm not sure if it includes management of children though www.nice.org.uk/guidance/ng69/resources/eating-disorders-recognition-and-treatment-pdf-1837582159813

We're still waiting to hear from the dieticians 😕 I'm pinning a fair bit of hope on them getting dd to eat more. I feel like if they can be quite authoritarian with dd she may pay attention.** All we get at the minute is fortnightly weigh ins and fortnightly zoom sessions with the Camhs team. We're also getting some intermittent support from the ASD Camhs team (well dd has one session booked with them.)

Its not enough but I feel like dd probably isn't high up their priority list as she does eat (the bare minimum) and isn't hugely under weight 🙁

We had a tricky breakfast and lunch, she literally stands up and runs away with her drink to pour half of it down the sink before I can stop her. If I get cross or firm I get a lot of verbal abuse which I understand is part of the illness but still not nice to hear.

I did manage to get her to drink her orange juice at lunchtime as I had promised her a nice walk if she drank it. She left more of her sandwich and crisps than I wanted her to though.

Dinner in a minute, wish me luck!!

Hope your day hasn't been too awful Scribbly

How's everyone doing? We've had another tricky day, dd was very anxious after lunch and then reluctant to eat her dinner and refused pudding 😫 There was a film she wanted to watch so managed to convince her to drink a glass of milk so she could watch the film.

She had a huge panic attack after drinking the milk though ☹️ I talked her through it but it was painful to watch.

Things def feel like they're going the wrong way atm.

Thanks for the advice and the link @Girliefriendlikespuppies. Although you've only got the dietician regularly @Lottsbiffandsmudge, she sounds brilliant. I think I'd rather one excellent responsive experienced person than lots of disjointed stuff as @Scr1bblyGum has.

A mixed weekend. DH and I have been bickering about it and we rarely argue normally. He thinks DD isn't taking it seriously enough, I'm just thinking let's get her weight up and then tackle her thinking. Plus because I'm in charge of this 'project' I feel like I'm being criticised.

On the instructions of the clinic we weighed her this morning. At the hospital on Thursday she'd apparently lost weight since the GP weighing but this morning she'd gained it. I do think the fact she was in leggings and jeans made a difference at the GP. Of course I don't know how accurate my scales are (they are digital though), but she was weighed on the same scales on the 11th and has gained 1.3kg so I'm pleased.

Of course I know going to the toilet, time of day etc can make a kg difference but small victories.

Oh and sorry @Girliefriendlikespuppies that things feel like they're going the wrong way. Progress is always going to be jagged.

Hi all @Scr1bblyGum hope the weekend was not too awful. @Girliefriendlikespuppies I know exactly how you feel re going backwards we feel the same at the moment. This weekend was awful. After starting well with food DD has started to hide food and throw some away (Eg I catch her drinking her milk at the sink and tipping some away not al but some) this has not happened before and feels like the start of a dangerous slope.
Then the snow scuppered her and her dads football session yesterday and she wanted to do a 9k run which is not permitted and she got so angry so much so that she shattered the oven door. This felt like the last straw to me as with so much cooking to do I went into panic mode and lost it. 😳 my eldest son had to call my mum to talk to me whilst my younger son tried to sort his sister. (DH was out on a much needed break for him). DS2 was then distraught as he hasn’t really seen her at her worst and she was by this point nearly suicidal. He is so sad he has lost is sister to the illness.
Anyway today the sun is out. My mum has driven over (which she really shouldn’t in the snow and ice at 76- it took her an hour to do a 30min journey) bringing an extra slow cooker and she is now sitting with DD in physics so I can have some time out to sort the cooker, tackle calling the GP and take a moment for myself.
When I read in the papers that schools are unlikely to open until at least April and poss May yesterday that was another blow. DD wouldn’t be going but my sons need it. They are stuck here with all this trauma. I have not been v good so far with the rages I can do the distraugtness but find the rages really hard.
Its DS1s 17th on Sat and the thought of not being able to bake him a cake is very hard. I always bake their cakes and as he can’t even take advantage of his present (driving lessons) I had something special planned. Oh and his birthday meal request was roast lamb....

@Valleyofthedollymix our dietician is good. She has agreed to meet my and DH alone tomorrow before DDs meeting as DH needs to understand the treatment process etc. Also I totally get what you and your DH are going through. My DH is struggling to accept the long term nature of recovery and I think he thought it would be sorted quickly. He still needs to come to terms with that. That is partly why we are seeing the dietician tomorrow so she can walk him through the plan. We also would like a feel of weight they are after (not to tell DD) so we can get a feel for how far away we are from being able to maintain and allow her some more activity freedoms....accepting that DDs relationship with ‘exercise’ and ‘activity’ has got completely out of whack...

Valley that weight gain is brilliant- well done! Sorry to hear you and your dh are bickering, it's such a stressful illness to manage and there are no quick fixes unfortunately. I agree with you though that weight gain should be the priority and everything else can wait. Have you got the Eva Musby book? She talks a bit about relationships in there. There's times when I'm desperate for a partner to help with dd and other times I think it's easier just me as no one to argue with 😆

Lots omg re the oven door 😳 I'm not surprised you had a meltdown- I would have done as well!!

Dd has been okay ish this morning, managed breakfast and lunch (scrambled eggs with added butter and cream, thick sliced toast x2.) Then I caught her sneaking out to walk the dogs with no jumper on under her coat 😐🙄 it's bloody freezing!! Thought we were getting somewhere with the making herself cold on purpose thing.

lotts that all sounds really tough - I've said before on this thread, I doff my cap to those of you who are managing to parent other children whilst looking after the ED effected child - I really don't know how you do it.

For his birthday lunch - could you do a pot roast on the hob? I've not used this recipe but something like this
www.goodfood.com.au/recipes/potroasted-leg-of-lamb-in-red-wine-20111018-29ute. or maybe some lamb shanks - I've used a few Nigella lamb shank recipes and a whole shank on your plate looks quite majestic!

valley - great news on that gain! I know what you mean about relationship tensions building up when normally there are none. At the risk of sounding all Oprah, I guess you/we just need to keep talking and sharing so you don't feel too alone/apart.

Girlie yay to breakfast but boo to no jumper - sneaky little blighters aren't they?

We're still playing Snakes and Ladders - climb the small ladder of new food tried (custard -whoop!) slip down the very long Snake of anxiety, self harm and anger contemplating a cooker guard now DD seems so flat and we think her depression and the anorexia are tag teaming her to cause most distress Obs on Thursday is looming so I think we're all girding loins for that one...

Hope those who've not posted in a while are doing okay - if you're not, please do know the thread is a good place to cry/vent/celebrate..

Thanks for all the support as ever @myrtleWilson and @Girliefriendlikespuppies. Yes I have got the Eva Masby book but am only about 100 pages in - a lot to take on board!

@Lottsbiffandsmudge can you borrow a neighbour's oven to make the cake and the roast? I know it contravenes strict covid guidelines but I know I'd be so happy to help out one of our lovely neighbours. Mind you, our oven is very iffy at the moment and I seemed to have ordered the replacement from a scam website, so that another fun piece of aggro for me to deal with.

DD was great yesterday apart from wanting to put water on her muesli at breakfast and a tearful bedtime snack session. She still loves macaroni cheese, hurrah. She stormed off to bed but then came down and sat with DH and I on the sofa being really open. She fears that she won't be able to stop putting on weight beyond the healthy point. She told her that her friends are always complimenting her slimness/skinniness. That she can't imagine ever eating like she used to again.

I'm so looking forward to her having some professional therapy. DH and I were making it up as we go along and were not always making sense and quite often contradicting each other inadvertently. I'm a woman who's spent quite a lot of my life thinking about my weight, dieting, berating myself, wishing I were thinner, thinking everything would be better if I were thinner etc. Not even to an unusual degree, I think a lot/most women fall into some of this nonsense. DH has been the same slim weight give or take a few kilos his whole adult life, thinks of food as fuel and if he needs to lose weight, cuts out brownies for a month. Suffice to say, we have different perspectives.

Hi everyone, I have read your posts but not got around to commenting. Well done all of you, whether you feel like you're doing well or not. DD1 is bumbling along. Weighed her yesterday at 37.5kg. the highest she's been for a while. Not enough, but better than 37kg

Well we’ve had a pretty grim few days. Weekend beyond awful. Dd admitted last night. Hospital really busy. Dd put in the holding rooms.Nobody came to see us for over an hour and a half to check her in. Dd kept wanting to leave. Kept having to reiterate that she needed to be there. Wasn’t fun.Was upset when I left. This is the 4th admission since the end of Sep and she has just started getting on track with work.GCSE year. She has missed loads so no mean feat. Having catch up doesn’t make discharge and battling with food easy.Really want her to do her online school lessons, easy as everybody in same boat. Because of how disjointed it all is ended up having to ring CAMHs FTs and the ward. It’s mental health issue but CAMHs bounced it back to ward. Could only speak to a nurse on the ward who said it was a no. Got to speak to consultant overseeing whole ward and will have to catch him on rounds tomorrow. No idea when so yet more time off work. Told he’ll have loads of other people to see so literally zero time frame and a possibility I won’t see him at all.Still no idea how long she’ll be in for. Basically in our area these kids are just shoved on busy paed wards with v little mental health support. Arrived this evening and dd still not on ward, was freezing last night( got given extra blankets this morning)and is just sitting in bed looking at her hands. I fail to see why she can’t be doing her work on her laptop. They came in to move her to another holding room just before serving tea, could hear the nurses talking about food right outside, great for somebody with anxiety about food.So sick of all this. Already been tubed and vomited. All not the fault of staff but a really shitty system.

Oh and just found out she’s been doing exercise in her room so yet another thing to keep on top of.😩