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...

Our first therapy session in the morning - wish us luck everyone!

@myrtleWilson

Oh - I'm sorry if I've worried you theysee DD had both severely restricted eating and over exercising so I wonder whether thats what made her more vulnerable. As it happened, her bio chemistry righted itself relatively quickly in hospital but I suspect its fallen away again now she's not even managing 40% compliance with her meal plan.

If it helps I can share the symptoms that I think were causing concern re - refeeding and led to her admission? But I don't want to pile on more worry either!

Would you be able to share any more about the symptoms? It would be really helpful for me.

I hope therapy in the morning goes well.

Yes, thank you for offering, myrtleWilson, that would be really helpful to me as well

Dd2 is making herself a hot chocolate Nesquik as I type, she has been doing so well since school re-started, I am hoping this is a corner being turned

Dd1 still a bit erratic but tonight she insisted she didn't want potatoes with her evening meal, then changed her mind when she saw they were fried!

I feel so awful about having two dds who have been or are in the grip of this - keep asking myself what else I could have done to avoid it

But I've always modelled a healthy appetite and cooked good meals from scratch etc I've never even been on a diet or talked about diet or body image around them - deliberately, as I didn't want them to have weight issues

Feel like I might as well have spent the last 16 years on fad diets for all the good it's done

Best of luck with the therapy tomorrow, myrtle

Hi everyone, not read the whole thread yet but wanted to mark my place to come back here!

My 14yo dd developed an ED over lockdown, it began with cutting out breakfast and then snacks and she got to a point where she would eat a small lunch and dinner but nothing else. She also massively ramped up the exercise, she lost around 9lbs which she didn't have spare to lose in the first place!

She is under Camhs as is being assessed for ASD and they referred her to ED service, she's had the initial appointment with them around 3 weeks ago and I've been in charge of all her meals since then.

Camhs also told her she could no longer exercise so that stopped immediately. It's taken a while to get into a routine but she is now eating 3 times a day and having 3 snacks, not gained much weight though.

I'm about 3/4s of the way through the Eva Musby book and finding it really interesting with useful and practical advice.

Rowling my understanding is ED are partly genetic and a brain disorder, absolutely not caused by anything parents have done. I beat myself up about dds ED and have blamed myself but am starting to understand now that it's not my fault.

Apologies I can't scroll back but someone asked about school and food. I'm stressing a bit about this as well, at the moment dd takes a packlunch in and assures me she is eating it 😐 I've told her if her weight does not increase or goes down I will come into school and sit with her to make sure she eats it!! I'm hoping that thought will motivate her a bit... I mentioned to her form tutor re supervision of food in school and he said it's not something the school could do 😕

Hello
My DH has been buying books but I've not really engaged with them yet but interested in your recommendation @Girliefriendlikespuppies
@TheySeeHerRowling- the parental guilt is strong..

Re-feeding syndrome - so for DD this manifested in low heart rate, low blood pressure (and a scary postural drop), dizziness (but never fainted), fatigue (but never went to sleep - she's never been a napper), stomach ache, cold (she'd often have blue nail beds and a blue tinge to her lips) and cramps in her legs at night, loss of ability to concentrate, finding it difficult to focus on conversations,. Plus the scale of weight loss over time - essentially a rapid starvation event.

Today - first family therapy... Didn't happen! We got waylaid by DD's obvs (more weight loss - 2.2kg in a week), continuing symptoms as above, weird blood pressure readings (now turns out that was a gremlin in the system). So off we went to hospital for more tests and re-admission for re-feeding. DD devastated.

But the Dr's were great and listened to our concerns about how re-admission would impact her mental health and we risked yo-yo'ing between hospital (poor mental health) and home (better mental health but more challenge around eating. Plus Dd was advising she probably refuse all food and supplement if admitted.

DD said she hadn't seen the hospital admission coming (her anorexia was blinding her to the weight loss that her Dad and I saw). The Dr picked up on this and had a conversation with her about if she'd had foresight of this as a possibility would it have been a motivating factor in compliance on meal plan - DD said yes.

I think she is genuine here (although the Mandy Rice Davies rule applies too!)but I guess the challenge is keeping the motivation close enough to make a difference.

Anyway, assuming bloods are okay - we're not being admitted and are on day release to return on Sunday for more obvs/bloods. I do wonder whether this closer monitoring may be a spur for DD?

Am not at all confident we're on sure footing but I cannot fault the Dr's for listening to DD's whole-self and for rearranging dietician input, changing a therapy session so we don't lose another week. Really really pleased with her care - even though we're still in a scary place...

Myrtle when they're talking about admission do they mean a general hospital? It sounds like she needs a specialist unit?

It must be so frightening for you.

The Eva Musby book is good, I'd recommend it. You can skim read and skip to the parts that are most relevant, I did that at the start of the refeeding and now we're in a better routine I'm working my way through it.

I'm also finding the FEAST forum around the dinner table useful.

myrtleWilson, that sounds exhausting and terrifying, I'm wishing you strength for the days to come and that the close scrutiny will help your dd

Thanks so much for your list of symptoms - dd2 had several of them back when she was at her thinnest, about 6 weeks ago, which has given me chills, but she hasn't had any recently (though can't really answer for the heart rate and blood pressure - perhaps I should invest in some home monitoring devices)

She has put on half a pound this week, not much but better than nothing (and definitely better than a loss)

She's also come down with a cold, after five minutes back at school

I've downloaded the Eva Musby book, thanks for the recommendation Girliefriendlikespuppies

Hi girlie - here it is the paediatrics ward which is good - the staff are all lovely. I do worry though about this progressing beyond her turning 18 and then having to be treated in the adult wards/system...

But...we're home! Bloods were okay, she's on probation for a couple of days and we see where we are on Sunday...

As an aside I'm slightly worried how frequently I type obvs for obviously that my laptop autocorrects obs to obvs

Myrtle have Camhs mentioned treating your dd in a specialist unit? I'm just thinking it sounds like she needs to put on a lot of weight which will be difficult and stressful to do at home.

Have you taken control of all your dds meal and snacks? Does she accept what good you give her?

I found it helpful to think of the ED as something that has 'possessed' my dd and the only way to get it out of her was to keep feeding dd. It's been so stressful and we're not completely there yet but dd does generally eat what I put in front of her now. We had a few episodes of her literally banging her head on the wall rather than eating something but thankfully we seem to have got passed that now.

Eva Musby talks about motivation and warns that although the threat of hospital admission may help initially unfortunately it's often not a long term solution 😕

She basically advocates the parents taking complete control of all food and portion choices and life stopping until the child/teen has eaten it. The parents are meant to stay empathetic but firm and not get into any discussions about the food so no compromises, no negotiating just keeping it very simple 'this is what you need to eat'

Tbh this has worked but I have picked my battles a bit! For example if dd has eaten the bulk of her breakfast I will ignore the fact she scraped some jam off and has left some crusts, in theory I think I'm meant to keep going until dd has eaten every crumb!

I also let dd choose her evening snack, it's always biscuits but she can pick which type of biscuit. It doesn't seem to stress her out so 🤷‍♀️

Hi Girlie - DD is under a meal plan from CAMHS/hospital following her discharge about 2 weeks ago.

When she was admitted she was eating 400/500 calories per day

The total calories per day as per her plan at discharge is about 1950 - in the first week of discharge DD managed about 50% of plan and by the end of the second week she's down to 20%. - so basically back where she was pre-admission.

The plan is very prescriptive - weighed amounts of food/liquid and if she refuses we offer a supplement (fortisip).

We will make her meal based from plan & give it to her. We'll have distractions (tv/chatting/etc) collectively or for her alone. She'll eat 30%. We'll provide fortisip, she'll refuse it. CAMHS advise giving set timeframes for food - so 30 mins for a meal or 15 mins for a snack - after that, take it away, provide supplement and then draw a line under it and start afresh for the next meal.

Realistically if this carries on she'll be tube fed in hospital in two weeks.

girlie - your approach with your DD sounds like it is making good progress - I'm interested in how the 'life stops until you eat it' works as this isn't what CAMHS have advised us... Does it not feel like a big battle all the time (although I'm engaged in a permanent big battle!)

theyseeher - really good news about the 1/2 pound but boo to the cold - especially in covid times.

@ClassicHummus I hope you're doing ok

@princesrules how are you doing - how was return to school?

@DishingOutDone how has the rest of the week gone for DD - I was really shocked at her being called out for appearance - I would have hoped for a bit more understanding

@angleseyllama @clopper how are you both doing?

Myrtle it's really tricky but the idea is that you (the parent) contain your child's anxiety and the way to do that is to be completely confident and calm. Easier said than done though. There's some short talks on YouTube by Eva Musby you might find helpful.

One thing I'd not fully appreciated until this week is how affected the brain is by lack of food. It completely changes shape and size 😮

I think we were fortunate that dd was seen quite quickly and therefore has responded better to the feeding plan. Although like I said she's not actually gained much weight yet 0.4kgs in 2 weeks 🙁

Gosh - 0.4kg in two weeks sounds so tiny doesn't it - these are the margins we're living with...

I'll have a look at the youtube link - thank you

Hello all. Sorry to hear about your children's issues with food. I am also a parent but a bit further into this than you. My daughter was diagnosed with anorexia aged 12yrs. She was admitted to hospital the very next day after her CAHMS assessment, and didnt come home for 10 months. Since then there have been numerous hosp admissions some long stays, some a few wks. I am 7 years into this now, we still struggle. She is now under adults and monitored weekly. There are some things that have improved, but still desperately under weight and struggles with eating. Her BMI is just under 15, have been told back in hosp if drops below 14. Despite all this she is going to university next week but staying in home town. We try to 'manage' her illness as best as possible so she can try and lead a normal life. It's been hell, have nearly lost her a few times. Problems with refeeding syndrome, organ failure, bone marrow failure etc etc. My daughters case has been very severe, so please dont assume this will be the same for you, but just wanted to say I have lots of experience if that's any help. Definitely reading lots of books about ED helped me, looking at BEAT website too. The more info I had, the better I could understand and support my daughter. But it's very frustrating and very difficult at times. I hope it all improves for you all.

@Bluebuddha10 thanks so much for joining the thread. Your experience must have been/be terrifying and exhausting. I just can't imagine how you all manage. I wish you and your DD all the kindness and love in the world

@myrtleWilson her mood has definitely improved somewhat with being back to school but I'm not sure on the eating side, im 90% sure she isn't eating at school and has had crap for tea i.e agreed to a steak slice which was 390cals but that was all for the day.

So sorry to hear about the set back with your daughter and hopefully the thought of readmission is encouraging her to try and be compliant with her meal plan although 1950 seems a massive jump from what she was so i thought she was doing quite well even half compliance. Fingers crossed things improve. How is she with school. X

Thats good news with her mood (celebrate all the small wins I say!)...princess

And....we're back in hospital as of today. She's lost a further 3kg in 10 days and whilst her observations are all okay they can't hold out forever so both reluctantly and not unexpectedly we are where we are.

@Bluebuddha10 and anyone else with more experience - how on earth do you manage any semblance of normal life/work with the uncertainty of this illness, the rounds of appointments, admissions/discharges - the complete headspace it takes up in all of your lives. Obviously my focus is DD but I just can't comprehend how this all fits together...

Hope everyone is doing okay - and if okay is too much of a stretch at the moment that you're doing not 'not okay'

@myrtleWilson
So sorry to hear about your daughter.
Its really not easy to cope with, especially the uncertainty, the worries etc. There is no magic wand I'm afraid. But for me I found work was a good distraction, keeps my mind occupied. Also although it's a huge worry and upset with being in hospital, it does also provide some respite. She is in the best place for now , use this time to recharge your own batteries. Catch up with a couple of friends, do things that make you feel better- you will need your energy for when she is discharged. Take one day at a time, try not to think too far ahead. I read loads of books about it and looked at the BEAT website. Knowledge is power. But it's hard, very up and down, good days, bad days. Stay strong x

Myrtle I'm sorry to hear your dd is in hospital, it sounds like that's where she needs to be for now.

If you get chance have a look on the FEAST website, there's an excellent forum on there called Around the Dinnertable with lots of experienced parents around to give advice.

It is interesting how perspectives change isn't it (well it is to me!)

A few weeks ago, the thought of DD being hospitalised for this filled me with horror. Now after hospital/discharge/re-admission... I know she's much better off in hospital than at home. Not to say she's not missing things from not being at home - she is. But the additional resources available do make a difference.

A couple of weeks ago I would have thought DD being tube fed was a complete failure but today we decided to move to that. She is exhausted, eating less and less each day, and then having less energy to eat the next day. Plus, we're asking her to do the impossible. She is cognitively deprived and yet we're asking her to engage in some really difficult conversations and concepts via her CAMHS therapist in terms of tackling the underlying issues.

So tube feeding was begun today with the aim that it will boost cognitive capacity whilst still offering food first, then supplement. It hasn't been at all easy. It hurts, she's overwhelmed by it.

I have wondered (without wanting to seem cruel) whether the overwhelmingness of it may not be a bad thing, but I don't like to think/see her in distress. Am hoping the immediacy of discomfort/pain will recede tomorrow and the NG tube provides a back up which means she can regain some cognitive ability. She had her first enhanced motivational session today and I do think its asking a lot of her to engage with that process with any hope of success without trying to give her a cognitive boost.... but this is all so new and I'm grappling with intricacies of a world I was unfamiliar with a matter of days ago.

How is everyone else doing - @princesrules have you managed to get an appt sorted - your DD's weight loss over time is similar to mine. Don't be afraid to ask if re-feeding syndrome is something to be concerned about (if you feel comfortable doing that).
@DishingOutDone hope you're DD is doing ok and she's coping ok at school.
@Girliefriendlikespuppies how are things with you?
@Bluebuddha10 has DD started Uni yet - I hope they're able to put in place support mechanisms.
@TheySeeHerRowling - how is DD doing
@angleseyllama, @minnieok, @clopper, @ClassicHummus - thinking of you all too!

@myrtlewilson that sounds absolutely terrifying. You sound so knowledgable and measured about everything. Can i ask how this impacts on her with school?

If its not too personal can I ask what her weight was to what it has eventually dropped down to.

My dd still hasn't seen anyone just one telephone chat with her and several with me, where I was told she would have appointments with both services within 3 weeks. They sent out the assessment letter and management plan but back page Nd management plan referred to another child not mine! So not very impressed. Weighed again this morning with a 2kg weight drop from last week so still steadily going down.

Its rare I see her actually shape as she wears big baggy clothes but I saw her in her towel last night after a shower and it saddens me so much to see her wasting away before my eyes and not knowing what on earth I should be doing.

Hoping to hear something soon

Myrtle, you sound so calm and strong but you must be in turmoil

The tube feeding sounds awful, but I'm sure it's the right thing for your dd at the moment When dd1 started with YPEDS, I remember her counsellor saying that there was no point digging down into the whys and wherefores of it all until she had gained some weight and restored cognitive function somewhat, so that rang a bell with me It really did make all the difference to dd1, even though it took her a while to get there

Dd2 is making such an effort - it's both good and heartbreaking to see, especially when she was crying over a bowl of 2 broken biscuits the other evening She KNEW eating them was the right thing to do, but she had to fight herself so hard to do it I was desperate give her a big hug but I know she'd have told me to get lost (gave her the hug later over something non-food-related, so I managed to sneak it in there in the end)

A question for everyone on this thread - has there been an element of social contagion in your dc's ED

I think there has with dd2, in that 2 of her circle of friends (about 10 girls) are also under YPEDS

Myrtle in some ways I'm guessing having your dd in hospital and being tube fed must be a relief, I know I would feel relieved that at least she would be getting some nutrition.

We're okay, I'm actually sat in Camhs waiting room now! Dd has gone off with the mental health nurse for a chat and didn't want me there, God knows what she's telling him as she's very good at telling people what she thinks they want to hear!!

Prince if you haven't already get yourself a copy of the Eva Musby book and have a look on the Feast website, they're currently doing a 30 day information course which has been really interesting. They email you a link to someone talking about the different aspects of EDs every day for 30 days.

I'm not sure re the social contagion side, I think dd def compared herself to other thin girls but afaik none of her friends have an ED.