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...

Can I ask for some advice please?

As you know DD isn't following her meal plan (I posted upthread what she was eating). So for example, dinner tonight was some fish (she ate 1/3 -1/2 the portion required, some vegetables (ate all) some potatoes (never eats) and fruit (eats). We're never going to make an overnight leap from that to full completion so we've been trying to encourage her to eat a bit more each night. To some extent that works - her intake of protein is going up incrementally. This she'll eat herself.

However, carbs and now fortisip are fear foods. Fortisip is a fear food because of some convoluted anorexia brain meld where liquid calories are a waste.

So last night we asked her to eat 1/4 of one potato. She refused. Same with fortisip previously.

I try to sit with her and tell all positive affirmation stuff, acknowledge how scary it is. She refuses to engage, then gets angry (sometimes scratches herself/pulls hair out) then breaks down in tears.

At this point she'll admit her fears (she's getting fat, we're going to make her eat/drink it all). She is able to eat said food/drink if she closes her eyes and we break it down into teeny bitesize pieces, or hold the drink and move the straw in direction of her mouth. She has actually said it helps her to close her eyes etc as then it doesn't 'feel' like its her doing the eating.

Now, am I going too far? To be clear I'm absolutely not holding her down or 'force feeding' her. But if I just keep saying have a bit more etc she stays in the determined "no" phase. It is almost as if she has to cycle through No, Anger, Tears and then be physically supported to eat.

For me, when she says "but you're going to make me drink it all" is absolutely the point she is saying I'll have some but I need help.

But I don't know if I'm turning into some sort of monster - there is no yelling, blame, just kindness and love. But she's almost 18, she isn't 'biddable' in the same way a younger child may eventually be (not saying at all that parents of younger children have it easier by the way - not at all).

The problem is that all carbs are a fear food and fortisip is a fear food and so ordinarily we would introduce fear foods later but the refusal on both carbs/fortisip means she's perpetually nutritionally challenged and only ever a bad observation away from going back to hospital.

I hate this disease, I really do.

Myrtle it sounds like you're doing all the right things, you have to be kind but firm which is what you're doing. If it helps your dd to close her eyes and eat small bits at a time then so be it. You have to contain her anxiety, anxiety feels horrible but is actually harmless.

I appreciate the hair pulling is difficult though, my dd head banged a few times and I hated that.

Have you read the Eva Musby book? She writes about what to say when they accuse you of making them fat.

I'm having an internal debate about dds evening snack, she is very attached to her milk and biscuits but insists on doing it herself and is quite sneaky about it so I don't always see her eating/drinking it. My issue is that it would be nice occasionally to have a different evening snack and also that I don't trust she's giving herself a proper portion.

The difficulty will be getting dd to give it up though and I know it will be a big battle.

Thanks girlie and day - you have no idea how useful this thread is to me! In terms of EDT support, I think in some ways the floating meal time support worker does some of this work - she explained that she was very used to being shouted at or having things thrown at her... We're in family therapy on Friday so I'll ask then.

girlie - sorry to ask the obvious, but how confident are you she's actually eating/drinking her snacks - I was amazed at the extent DD was able to hide her snacks from us? Could you play a game at snack time - maybe UNO or something so she makes the snack and you're all together?

day - gosh, tomorrow sounds like a big day. in my experience they do tend to discharge once physically okay and I'm sure at the moment with covid their discharge pathways will be top priority. I think holding firm in the meetings about what support you need will be key. Good luck!

@Bluebuddha10 am so sorry to hear about your DD's ongoing difficulties - dipping under 14 after managing not to do so for such a long time must be soul destroying. In terms of input - is it DD keeping you out or the adult services (I'd imagined that if DD wanted your input to be heard they've have to listen to you?). And for you, do you have support in place to help you at all? My heart breaks it really does - do use the board as much as you need (although I know we see you as a wise owl please do check in)

Finally, @Bellabluea happy birthday to your DD for tomorrow- not the day you'd either have imagined but I hope you get to have lots of fun!

We had our first meal time support visit today - She had previously met with us but this morning she rang and said she'd like to come around afternoon snack time.

Was really helpful - she spent time with DD, bit of time with DH and I and then we were all together for afternoon snack. She'll link in with DD's motivational therapy and confirmed we are on the right track as to how we're going beyond "I'm done" at mealtimes. Was really reassured and she's going to drop into a dinner session next week which is the most challenging meal.

Amazingly she says she has done 12 hour shifts with a family going through all the meal cycles. Am in awe of her ability to hold the moment when needed.

Am feeling very grateful tonight. Sending love to all those reading - do check in if you've got a worry or indeed some good news to share..

Wow myrtle that sounds brilliant, it really feels like a bit of a postcode lottery in terms of how good Camhs are in different areas.

We're okay, plodding on. Dds period started again, they stopped for around 7 months and she had a light one about 5 weeks ago and a fairly normal one now. I'm guessing that's a good sign that her body is starting to recover?

I've been watching a series called Diagnosis on Netflix about people with undiagnosed illnesses. The one I watched tonight was about a teen girl who couldn't stop being sick, she had something called Rumination syndrome which was something I'd never heard of before.

Floating mealtime support worker sounds brilliant, Myrtle, what a load off to not have to be in charge of every single meal

Not the greatest day today - dd's weight gain was too small to be treated as anything other than maintenance so no full time school yet

She was angry at first, still insisting she's FINE and we're all making a FUSS, but we had a long conversation afterwards that chipped away some of that false bravado and she admitted (for the first time) that she is still hearing the 'anorexia voice'

She's been saying over and over that she just wants things to go back to normal, but today she said actually all she wants to do right now is sleep Perhaps she'll let her body rest and heal at last

And she had a jam tart for evening snack instead of trying to mug me off with fruit as usual - so not all bad, I guess

Day, your ED people sound as if they barely know what they're doing, the advice is so inconsistent for you and dd

Sounds like she needs something like myrtle's mealtime visitor

Hi everyone, I've been on Mumsnet for years. I have 3 ds 13,20 and 24 and dd 17. Diagnosed anorexic just after lockdown. She was extremely low on weight and narrowly escaped being hospitalised immediately. We had seen gp prior to lockdown but was very unhelpful. She had full bloods weekly and attended camhs eating disorders team weekly for therapy, dietician and obs. She is very aware and mentally quite together. She initially wanted to lose a bit of weight for prom, then got in a rut. She's very Cooperative and takes everything on board. I went with her as I managed to remain on furlough throughout the summer but she started going alone after September. She's at College but last week they asked her to work from home as she is very thin and asthmatic so she is clinically vulnerable with regards to COVID. She's doing well in all 3 a levels so no concerns there and they are happy with her very slow steady weight gain so no re feeding issues. I am still very worried as I didn't realise how slow the weight gain process can be

Day God all the professionals involved sound hopeless! I really hope things are better for your dd this time around!

Welcome calamity that's good your dd is being cooperative. I've found the weight gain to be slow as well, dd has been eating 3 meals plus 3 snacks a day since the end of August and has only gained a couple of kgs.

I think when the body has been running on a deficit for a while it takes quite a long time to catch up. I also read that for weight gain you should be aiming for between 3000-4000 calories a day 😳 We don't manage that which probably explains why it's been slow!!

That said dd had a big dinner tonight of pesto pasta with garlic bread followed by cheese cake with cream 😮 She is starting to seem a bit more relaxed so am hoping things are improving...

That said she had her bedroom window wide open and her bedroom was then cold 😕 I asked her why she had opened it and she said 'I didn't' she must know I know she's lying?!!

Have you been prescribed Fortisip or Ensure to offer DD if she's not eating the plan? Is she taking it? My DD was but after discovering/revealing she wasn't actually drinking it, we now really struggle with her having any of it.

Welcome calamity I hope you find the thread useful.

Off for obs and family therapy this morning...

Hmm, I'd press for a supplement- she was being tube fed in hospital so it's a big unrealistic expectation from team to go from tube feed to physically eating the whole plan imo. Of course, the supplement may not work but at least you'd feel you have another line of defence?

Feel free to use us as an example where discharge (in similar situations including tube feeding) included a supplement so if it's happening here why not where you are- good luck with CP

Thanks guys. Can anyone advise me about what is going to happen when she turns 18 in January? Obviously she won't be a child any more and I'm worried that a change to adult services will be more than she can handle. On the surface she seems to be doing really well but there are problems still. The demon is still very much with her and I see that in the way that she refuses to let anyone make her meals ( I allowed her to do all her own meals as long as her weight was going in the right direction and I do random checks ) . I'm so scared to rock the boat with her, I want to be as encouraging as possible. She's really competitive so one thing that works is setting little challenges. Going out for the odd meal. She will only go to 2 restaurants and they're both carvery types so she can have control over what goes on her plate. Takeaway night, she will have a personal dominoes pizza every Sunday night. The latest one she's chosen is advent calendar. We get one of those big empty wall charts with just numbers on little pockets and we choose 24 treats to put in it so it's a challenge a day for December. I'm proud of her but we've a very long way to go yet

Feel like I'm hogging the thread hit his morning! Calamity in our area CAMHS start planning a transition to the adults team about six months before 18th birthday. Dd is 18 in March so we've just begun planning transition. How it looks for us is the adult team worker joins DDs care plan meetings over next couple of months and adults start working out the best way they can support DD. There is usually an overlap of care so either adults start being lead few weeks before 18 with CAMHS in support or vice versa. We were reassured that there isn't a cliff edge and the assessment process doesn't start again (ie DD isn't at the back of the queue) I hope the reassurance plays out. There is a poster on the thread bluebuddah who has an older daughter (19) but she's having a tricky time at the moment so may not be around as much but if you search her posts on the thread there will be a bit more insight...

Day glad the latest session went well, I never used to buy puddings or biscuits but I buy tons now 😬 my shopping list is butter, double cream, various puddings and biscuits etc. I feel like I've put on loads of weight (no scales so I can stay in denial at least!) Does you dd like milkshakes and smoothies? They're quite good ways to get extra calories in.

Calamity I hate to say it but I think the only reason your dd seems cooperative is because she's in control of the food. Have your ED team advised you about letting dd make her own food? Weirdly once I had to take on all of dds food choices (after the initial couple of weeks of stress) her anxiety actually reduced. I think the stress for dd came from the responsibility of trying to make her own food choices.

I know what you mean about rocking the boat though, even now I tend to keep the meal times and snacks along similar lines as I know anything unexpected will start www3.

Girliefriend I feel your pain with all the sweet and fatty stuff in the house I could stand to lose a few pounds personally but it ain't gonna happen for a while yet

We've had an emotionally draining couple of days - dd2 will do brilliantly for a while and then get tired and tail off and start refusing snacks

I had to make it absolutely clear that her calorie intake was nowhere near the level needed to get beyond this limbo-like part-time school, no hobbies, no socialising phase

She's responded to this by claiming she doesn't want to go back to school anyway - after weeks of begging to be allowed to return full time

Every time I think we've turned a corner something happens to push us back

Calamity Hello and welcome I too have tried to let dd have a little bit of control over what she eats, but I think I'm finally having to give up on that, which feels terrible, but whatever works at this point

Day, really pleased to hear that you had some good quality input - long may it continue!

They I tried a few weeks ago to let dd make her on breakfast and it ended in tears. She just can't manage putting on enough butter on her toast etc, at the moment I can't see her being ready to do her own food for a while.

We've had an okay day, dd ate chocolate tonight which is a fear food so that was a win. We also only went on one short dog walk (normally we go on two walks every day) as the weather was so awful. Dd also wanted a cuddle earlier 😮 I nearly fainted, she's not wanted any physical comfort from me since this started around 8 months ago!!

Day I think you have to pick your battles to a certain extent but I wouldn't let dd dictate or negotiate too much. I also wouldn't discuss upcoming food so if you wanted her to eat scrambled eggs just do it and give it to her without discussion. Just keep saying 'this is exactly the right amount/this is what you need' on repeat. You dd needs you to be confident so even if you don't feel it fake it (I should take my own advice there though!!)

My dd finds butter easier if it's melted into the toast so I tend to put it on when the toast is still really hot. Likewise she'd have a fit if she knew I make her porridge with double cream, there's absolutely no benefit to her knowing so she doesn't!! It seems counterintuitive to be sneaky in terms of getting extra calories into them but it's a kindness as that's what they need and by then not knowing it causes them less stress.