Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Hope everyone's Easter is going okay? We've managed a day without a breakdown so far although not a single drop of chocolate has passed dds lips yet 😕 hoping she will eat some for 'pudding' after dinner....

Found the new thread!

I found you! Yay!
Ok,day here. DD has eaten a bag of choc orange mini eggs (in lieu of brownie afternoon snack so same cals) but feel this is s win!
Yesterday she ate half a small bag of Doritos again. After I accidentally made her turkey burgers too small and she noticed and told me....
She also asked me to work out cals in hot cross buns so she can have them for,breakfast.
Food wise things are a little easier.
Exercise,not so much.
Hope everyone else ok?

We had a good day. He ate some chocolate and all of his roast dinner, also had dessert of apple pie with custard. He also had a chicken and cheese sandwich for lunch. Two full meals and dessert is a big improvement. Hopefully he won’t now decide he doesn’t need to eat for the next few days...

@Girliefriendlikespuppies well done! Hope DD manages to try a little bit for dessert. Is her mood any lighter?

@NelleBee great news. Sounds alot more positive on intake. That plus the McD's! What do you think has made the difference? Hope it continues....

@exLtEveDallas you know where to find us when you're ready to come back. Hang in there. I know things can be excruciatingly sh#t at times and you sound defeated at the mo but you'll come back up. Looķ after yourself as muchas poss. .

@Lottsbiffandsmudge so goid she's had some choc at least. DD hasn't gone near any but had her first choc brownie for pudding today. Couldn't quite believe it. Floated the idea of some Easter choc as part of her snack and didn't get annihilated so secretly hopeful....

@Stilllivingin glad youre still here! How is DD doing now?

DD had first riding lesson this pm after a 6 mth break from it. Was really nervous she'd get out of breath and tearful in middle of it ( happened last time we came back to it...) but coped and even managed some smiles..

We had a good day today. I know for most of you supplements are not encouraged. In our case its an essential. DS has been prescribed polycal for when he doesn't want to eat. He takes it diluted in water and its 250 calories at a time. Big achievement for us he took it today of his own accord. Full plate of dinner tonight which with his other medical condition is veg only with gravy but also had a small piece of gluten free puff pastry with it. Glad to see there have been other signs of positive today on here.

Well dd ate a whole Easter egg for pudding (a medium sized one!) she ate half of it after dinner and then went back and finished it a couple of hours later, that's unheard of!!

Was looking at her today and she looks so much better, she was just starting to get a slightly curvy figure when all this started and I can slowly see it coming back ☺️

Mood wise she's up and down but overall actually today was a good day, we saw some family we've not seen for ages and it was so lovely seeing the cousins together.

Tomorrow she's meeting friends for lunch 😕 I'm fairly confident she will eat something but I reckon there will be tears later...

Lots that definitely sounds like progress 👏🏻

Roo yay for riding, dd is booked on a hack next Saturday and can't wait!

too up and down.we have got weight /bp monitering for 4weeks as she's ok weight wise and "doesn't meet full criteria"(whatever that means).received letter yesterday from dietetics to book app.she still not eating breakfast and on the hummus,veg and pitta.she had that at lunch today and 2dippy eggs tonight with a slice of toast and berries....
They said get her up and moving out of bed as depressed...she doesn't really eat more when moves more so lost 300g last week.hoping this isn't an ongoing trend.will have to see...
Eve sending positive vibes lovely.some times you have to pull back in on yourself to reassess,recover equilibrium and keep going

Dd ate some chocolate snd percy pigs. V hungry.Bizarrely still struggling with some of the plan and had an Ensure Sat. Really hope they support her well on discharge as the ED is still very much there. I’m really worried she thinks it’s a magic bullet.Going to need to access therapy, nothing in place to get her there as she got admitted so quick.😩

Lots of positive news from yesterday!
@exlteve sorry it’s so tough please come back when you feel up to it. It’s so tough.
Well just sent DD off with her dad for a mountain biking trip! No sport today as BH so this was planned as a fun alternative. After a good few days she is excited.
I have packed her off with morning snack (with the milk in insulated cup!), lunch which I have sneaked in extra cals as she won’t have butter on her sandwich (she would on a toastie which is today’s usual lunch) and so I have made her have crisps instead which are more cals and I found an individual pot of Greek yog which is 20g more than she usually has in a bowl at lunch. Usual afternoon snack.
DH has copious instructions and knows not to over do it.
I am still a nervous wreck. After months of being solely in control (mostly goes Dd would not allow DH to do anything with her food) it is so hard to let go a little.
But this is all part of our plan to break the link between physical activity and cal burning/ fitness and try to move back to physical activity as sociable fun - we have always been an active family and it has been so hard not to be able to do stuff because DD could not do anything over her rigid fitness plan. I feel liberated having thrown it out. Although I am conscious of not allowing her to do too much.
Weigh in day tomorrow and I have no idea how it will go....we need a few more gains and I am not sure she will manage any at school so we need to capitalise in these holiday weeks.
Anyway supermarket for me today and a meet up with a friend in her garden although it’s sleeting here!

Good to see you all. Yesterday was ok. 2000 calories just about scraped in. Interestingly, DD1 was vile before breakfast yesterday, but calmed after having her meds. Until now, her evening meds have tided her over for the morning, so she's obviously getting used to them.

Tough weekend emotionally. Had various relatives over to visit in the garden and DD1 wouldn't come and see any of them.

Sorry to hear it was a tough day @Lougle. We found that DD got used to olanzapine after a few weeks so we were advised to increase gathering dose. Which we resisted. Which went badly so we then did it! Been on 5mg ever since and still seems to help. I guess it takes time to find the right balance in each case.

Lots I hope your dd has a good time, I know what you mean about letting go, it is scary!

Lougle sorry to hear things are still tough, I think with things opening up my dds anxiety has definitely increased.

I was wondering about sending a WhatsApp message out to various close family relatives with a do/don't talk about list on them? What are peoples thoughts? It would say something along the lines of;

"As you know dd is recovering from an ED and it's really important that the language used around food and weight is helpful, so wherever possible please try and avoid talking about good or bad food or implying any moral judgments over food. For dd the healthiest foods at the moment are high calorie and high fat.

Also please try not to comment on dds or anyone's body shapes, even if you think you're being complimentary it can be taken the wrong way when you have an ED!

Do not comment on what dd does or does not eat, i am closely monitoring it and I know exactly what dd needs."

Thoughts? Is it too much/too controlling??

I would ring and say this not send as a text message

Hmm not sure. I guess it depends on how you usually communicate with the people in question. For instance this would not go down well with older members of my family but my brothers would be fine with it. I think sometimes people are really worried about saying the wrong thing so some guidelines would be helpful for them but I think I would speak to most of my family on the phone about it. I guess that might be a long job depending on how many you are talking about? Maybe do it over time if some are not visiting/ speaking to your Dd soon?
I have pointed my family at the beat website and I know my mum has done a lot of reading around the issue which has been very helpful to get her on the same page.

@Scr1bblyGum glad DD managed some choc! Plan is bound to take time though...prob all sorts of internal rules she has to deal with. What kind of therapy you gunning for? CBT or smthg else? Am still unsure whether to pursue psychologist option for DD now she's out...wld really like her to have a therapeutic channel even tho she finds communicating really hard.

@Girliefriendlikespuppies think your message is a great idea. Can hit everyone in one go. Been many occasions when I wished people knew about approp stuff to say/ not to say and fretted about what might be said! Makes a lot of sense.

@Lottsbiffandsmudge hope DD enjoys today - and you having some space! Am sure it will do her some good mentally. As you say, keeping activities smthg enjoyable you do as a family, has to be the best way forward on that one. We really need to invest in some bigger bikes, DDs is looking a bit teeny now!
@Lougle hope DDs mood lighter today.....🤞

Struggling here with things to do at home...this cold snap isn't helping . Def need change of scene - feeling like I'm becoming one with the kitchen.

@Girliefriendlikespuppies I wrote on this post a while ago as I had AN during my teens (and am now recovered) and am now studying a MSc in EDs. I think that, for your DD's sake, everything you have written needs to be said to your friends and family. I agree that some members might be riled by it, but if that is what it takes to stop a silly remark, it needs to be done. I did relapse after a family member made a remark they thought was helpful... your DD is already surrounded by endless 'healthy eating' promotion anyway, so minimising remarks made my close friends and family is really important. The hardest thing about ED recovery is, as soon as people know you have had an ED, they become weirdly interested in what you eat and your weight.
I went off on a bit of a ramble BUT the point I want to make is YES have this conversation. However, it might be better to have it over the phone on an individual basis just so you can reiterate certain points (especially with older relatives who sometimes just don't understand).

Thanks for the thoughts, it would be sent to my brothers, their wives and my parents/step mum... I find talking on the phone about dd really difficult as she's always here and has extremely good hearing when she wants to

I do think it needs to be said as Ystd a few throw away comments about chocolate being 'sugar and crap' were made by my brother 😫 it's just not helpful and I'm not sure they get it...

I would definitely say it. You are best placed to know how to say it in terms of method of communication. I do think a group text/message/email can work well as no one feels singled out - people might be offended and think why are you telling me?! Conversely the opposite can also be true in that the person mostly like to say something thinks the message doesn’t apply to them.

DD1 is on the way down again. 2500 calories in today, but 1500 were breakfast, no morning snack, no lunch, one shortbread and a glass of milk (that I added double cream to) as a substitute. Some Easter egg for afternoon snack. Dinner was a fail - a sliver of meat (20g), potatoes (50g) and a mouthful of veg after much persuasion. So basically, one meal, 2 snacks.

She's on fluoxetine 12mg, and olanzapine quarter tablet morning, quarter at 3.30pm and half a tablet in the evening.

A third thread - great that there's so much support, sad that there are so many in need of it.

I had the very issue about relatives talking about weight loss the other week as my bro mentioned that his wife had lost loads of weight. On our WhatsApp I very casually said could we not talk about weight when they came round at Easter (knowing my sister in law's weight loss might be a topic), he was very apologetic and said it made him realise how mainstream these sort of conversations were, I said gosh no problem at all, sees worse on tiktok.

In other words, not a biggie at all. And frankly if anyone gets offended, that's there problem but I suspect that most people want to be as supportive as possible and can only do so with some guidance.

Meanwhile DD still not putting on much weight. Feels like we're plateauing. She's seeing friends today which means that she won't eat properly, but I feel like reintegrating with them is vital so will have to let it go.

1.2kg on today. The support worker seemed content with the weight gain despite my comments that she's not eating regular meals.

Having said that, today she has had Coco-Pops for breakfast, 2 chocolate bars for morning snack and for lunch: 2 scotch eggs, a cheese string, a chocolate brownie and 300ml orange juice.

She's done better than my dd today Lougle shes managed her usual bowl of porridge and slurp of smoothie, one roll for lunch with soft cheese, a bag of cheddars, another slurp of smoothie, a small amount of yogurt and half a cereal bar 🙄 My 3yo nephew eats more than that!!

She's in a foul mood today, probably because she's not eaten enough.

Roolet12, Lougle And all, just to update you DD was admitted on Thursday night as I could not take the worry at home and fights over food and took her to A&E, which CAMHS said to do as well. They admitted her and she's been on a paediatric ward since on a meal plan, there are 3 others like her there but they are all refusing to eat anything and are only tube feed. Thankfully DD doesn't want a tube and is eating. She's trying so hard but it's really tough.
I'm quite annoyed that a mental health ED specialist/psychiatrist has not seen her as yet. The pressure of eating is quite taxing on her and she is really really down. She can't see the point in anything, we came home for a 'home visit' today and she said it's hopeless, no one likes her, she has no life etc crying non-stop.

What is the best way to push for some meds to lift her mood? I think they would make the world of difference as she is in such a bad headspace. Plus she's put on no weight in 6 weeks and lost weight over that time (WFH approx 71%) shes the same weight today as when she was admitted to the hospital.

Hospital says they might discharge her tomorrow.
What can I expect from CAMHS as a follow-up from here on in?

@Girliefriendlikespuppies you're fighting though.

@SoTiredNeedHoliday I think if you feel she'll spiral at home, then you need to pull up your big girl pants and start saying things like 'I'm not happy for discharge until we've had a proper psychiatry review.' 'I feel this would be an unsafe discharge because DD is only eating to avoid the tube, and once that threat is removed, she'll revert back to her previous restriction.'

When I was in hospital with DD1, I saw a mother string out an admission for four days by just saying 'so it's too late to discharge her now, so we'll be stopping overnight then.' 'my DD has had terrible pain so I'm not happy to go until she's got a proper pain plan'. 'I'm not happy taking her home when you don't know why her tummy is hurting...' DD in question was happily supping on hobnobs and Ribena!!

You can do this.