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.

Argh. DD1 isn't feeling well, I get that. But I had to make her eat morning snack and lunch, then she's refused afternoon snack and had 1½ slices pizza for dinner. We ate out at ASK and she spent the whole time either using the toilet or announcing that she felt sick and shaky.

Hello ladies, sorry for crashing your thread but looking for a bit of advice on behalf of my DD - who doesn't have an eating disorder but her friend does.

I do not know friend well but she has been very ill over the last couple of years with anorexia. She is incredibly thin, has been in and out of hospital regularly, goes home every school lunchtime (assuming so a parent can make sure she's eating) and clearly isn't doing well at all. She's 15/16.

DD and her other friends are a caring bunch and want to make sure the friend is included in group activities when she is not in hospital. The eating disorder is very much the elephant in the room, nobody directly addresses it, the kids are uncomfortable talking about it, if I ask how friend is doing it's all "don't pry, don't be rude, you don't ask those sort of things Mum". However, most of their plans involve food in some shape or form - going into town shopping and then to Nando's, going to each other's houses for Netflix and pizza, going to the new ice cream parlour to get a cone and eating it in the park.

DD and friends are tying themselves in knots over including or not including this girl in their plans. Do they invite her, knowing she won't be able to cope around them eating? Or just not invite her?

They have had classes at school about eating disorders and information about where to go for support if they personally are worried about their own eating. But nothing about how best to support a friend.

It's very hard. This girl is clearly very ill and they just want to include her, but are beset by teenage awkwardness about the whole thing. I don't know her parents either, they have recently separated acrimoniously which I suspect is just one of the girl's many difficulties.

Hello @RaspberryCoulis . It's lovely hearing about the friends wanting to include her. It Makes me very sad how my dd has no social life now. Friends dropped away and then it gets harder and harder to fit back in.
I would say to nearly always invite the friend but give some options like , 'we are meeting at 5 for Nando but feel free to come meet us outside cinema (wherever) at 6 instead... ' etc. It's always nice to be invited.

If the friend us as poorly as you fear, sleep overs just won't be possible at moment. Think the girls need to be discrete about those.

It's tough to know what the right thing is to do... but definitely including / inviting the girls as much as possible is the right thing.
My dd prefers 121 meet ups now. I think the group may need to do things in that way as well.
HTH x

@sm701 just wanted to respond to your post about extreme hunger your DD is having. It is a totally normal part of recovery - but can be quite disorientating. The body's needs have been ignored for so long and once some more ordered eating returns I think the body panics thinking there's a risk it will be switched off again - my DD described being obsessed with sandwiches in the very early days of her recovery with her body saying to her "you will let us have another sandwich won't you" DD described the extreme hunger as being a bottomless pit. But in our experience it comes and goes until the frequency lessens and their body trusts that the food is coming and they can rely on usual hunger cues instead of extreme ones. Here is a blog I read about it
www.hopefullnutrition.com/blog-1/dealing-with-extreme-hunger-in-eating-disorder-recovery
@Valleyofthedollymix I think taking your DD out of school is the right decision and hard one. As you know mine has been out all of this school year but since end of March has started to increase socialisation a lot more now.

@myrtleWilson thanks for replying. That's exactly it... her tummy has no upper limit for Nutella on sour dough or weetabix!! She panics thinking she can't stop. I have to drag her out of kitchen very upset as she must have more . It's obviously a much better place for us but it's an obsession still (and very upsetting for her to be doing exact opposite of what she's been doing). I think it's classic Minnesota experiment isn't it?! It's such a bumpy road

@RaspberryCoulis thats lovely they are aware and want to help and not lose her as a friend.
Definitely @sm701 invite like said.

They can also be aware of triggering actions or conversations.

• For instance, if they are eating at school (snack or anything) ensure all the 'friends' eat their whole portion even if the affected girl can't or doesn't eat.
• Never through away or decline a snack or meal in front of the girl.
• Don't post things on social media about diets or eating
• Don't make negative comments about their own or the friends' appearance or weight.

Not inviting the girl will make her think she's being rejected and possibly her ED voice will say they reject her because she's 'fat' or 'too fat to eat Nandos' etc.... it makes no sense at all but ED's are tricky awful things and really hard to get rid of.

They have been inviting her, and she has (mostly) been declining. I think some of them are of the opinion that there's no point keeping asking as she'll keep saying no. She was over here when they had a BBQ a few weeks ago, she arrived very late clearly to avoid the food part but that was fine, she seemed to have fun with them.

I hadn't thought about the other things you said @SoTiredNeedHoliday. DD is quite guilty of talking about healthy and unhealthy foods, and making "oh I'm so full" comments after picking at her dinner. She doesn't have disordered eating - she won't eat dinner as she thinks eating at 6pm to fit around everything else which is happening with her siblings is ridiculously uncivilised and that "everyone else" eats at 8pm, no earlier. So picks at her meal then reappears in the kitchen at 9pm to eat massive quantities of oatcakes, toast, bagels and peanut butter.... Pickiness around food appears to be a "thing" in teenage girls.

I have spoken to her about how ill her friend potentially is, and how dangerous eating disorders potentially are. She (and her friends though) do seem to be at a loss concerning how to behave around someone who is so ill and whether to carry on as normal, pretend it's not happening, talk to her about it... It's a real minefield. I think they worry that saying the wrong thing will make things worse so just don't say anything to her about it at all - pretend it's not happening, and pretend they can't see just how ill and thin she is.

I really feel for all of you mothers going through this with your own kids. It's so hard.

@RaspberryCoulis perhaps you could ask the school to pass on a nice message to the girls mother, about how the girls miss her and really want to help her if they can. She is probably telling her mother that she 'has no friends' and 'everyone hates her' and 'only invite her because they have to'.
ED give the patient such cruel thoughts, they really can't think clearly or see things for what they are. If you want to look at a bit of info about AN see this link HERE I was most certainly uninformed before my DD was diagnosed with AN. It has been a big learning curve for me.
The rigid thinking around eating dinner at 6pm or 8pm etc is pretty normal but AN kids often live by these rigid rules very strictly. It certainly wouldn't be helpful for the friend to hear about how your DD is not eating dinner for example.

Also talking about healthy and unhealthy food isn't particularly helpful as the patient will have been told what foods they should be snacking on by the CAMHS or DR's and for them it is high calories that is important. For instance, my DD has 2 tablespoons of peanut butter every morning on her toast and some kind adult told her how 'naughty' it was to eat peanut butter which caused a dent in her recovery while we assured her it was good for her to eat it. Camhs also has things like kitkats and ice-cream and cake bars written into the food plan for DD. Along with 3 balanced meals.

The general guide is there are no 'unhealthy' foods, it is moderation and ensuring you have the right nutrient intake that is the most important thing.

AN teens should be eating something like 3000 calories per day

@RaspberryCoulis I've no useful advice for you as DD hasn't even told her friends (something about to be amended), but how lovely that they're so concerned and that you're taking this trouble. This advice given here is so great - not just for peers, but also wrong-headed family and friends.

We're in a new regime as prescribed by CAMHS, who until now have bee very softly softly. DD is to have everything on the meal plan. If anything is refused then it is noted as deficit and offered at next meal/snack time along with whatever she's supposed to have then. Any deficit at the end of the day is noted and after three days they'll do a NGT to make up for it. Writing it down that seems hard to believe and extreme, but that's what they've said.

So far we're down a morning snack...

We're almost at end of term here (Scotland) but we quite often gets stuff from school about what we'd like to see added to the PHSE curriculum. I will definitely mention eating disorders and strategies for friends.

I can see how damaging it would be for anyone with an eating disorder to hear their friends talking about food or skipping meals or healthy/unhealthy food. Maybe though if they did something on this in school they'd listen - because you know what teenage eye-rolling is like when mum tries to talk to them. Perhaps I'll suggest that school invite someone from a support charity in to talk to groups.

Thanks everyone here for your fabulous advice. Hope your young people start to get better soon.

@Valleyofthedollymix really hope this new regime gives your dd the jolt she needs and you don't get to NGT. We ended up only permitting school the day after fulll 3+3 and this meant dd missed about 3/5th of days in last half term. Rule still applies but haven't had to use it in last two weeks.
Let us know how you get on,

Raspberry I think you've been given some good advice, the best thing your dd and her friends can do is eat a relaxed range of foods around the friend with anorexia. Definitely avoid conversations around weight and appearance in general. Also should this friend ever come to your house make sure any weighing scales are hidden away. With regards to food and eating out eventually this might happen but this should be done with the parents knowledge so that the friends can keep an eye on how much she actually eats.

Valley 😳** I'm pleased that the ED team are playing hardball now though. Softly softly doesn't work with EDs unfortunately 😒 will they put an NG tube in at home? Be warned that a more hardline approach is likely to bring out the ED monster in all its hideous glory but you have to see the beast to slay the beast and all that 😐

That plan sounds very clear, @Valleyofthedollymix.

DD1 is still unwell. I took her to a drive through test centre today, so we're waiting for test results.

@Valleyofthedollymix how are you going with the plan? Do you think she will need the tube? Perhaps this will be a turning point for your DD

@Lougle I hope it is negative, that's the last thing you guys need

I hope the weekend has started off ok for everyone

Valley hope the new plan is going okay and that your DD isn’t building up too much of a deficit.

Lougle hope you get the Covid results back soon.

It was our home weigh-in this morning. DD put on 300g this week which I know the care-coordinator won’t be happy with on Monday. DD’s weight gain is so arbitrary. The week before she put on 1.1kg and we did nothing different to this week. We are starting to see a pattern emerge though which seems to be 2 weeks of small gains followed by a much bigger one. All in all DD has gained 4kg in 7 weeks. And she needs to put on another 4kg to be back to the weight she was before. I think that would put her around 95% wfh. I can’t see that her mental state will be better by then so I think we will have to push for higher but I know that DD will struggle with that.

I’m really torn. Should I be pushing for more weight gain or is this enough? She has her exams coming up this week so I don’t want to add more stress to her for this week but it’s just slow going.

DD1's test was negative. I think keep plodding, Rollergirl.

I posted last week when we discovered it looks like my DD15 has an ED. It’s been a rollercoaster week, I took her to A&E last weekend as I was so worried about her weight loss (though it looks like this could be down to our dodgy scales, I’ve now bought some new ones). She has had blood tests, BP etc and everything seems normal, but she has definitely lost weight, it’s visibly clear to me. The GP has said she doesn’t fit the eligibility criteria for referral to the ED team as there is no record of weight loss - apparently this needs to be measured by a medical professional and not at home??

I wondered if anyone can help with a couple of questions.

Is a referral to CAHMS separate to a referral to the local ED team? Should I be doing anything to push for a CAHMS referral separately? Our GP seems pretty useless about this and said the forms are complicated and he doesn’t see them very often…

DD will happily eat dinner in the evening. We had a takeaway last night and she ate loads. However she won’t eat during the day and seems to have a real block about this. She will sit in front of her lunch without eating and crying for hours, until it’s dinner time. Should I persist with this, and has anyone experienced anything similar? I feel reassured that at least she is eating dinner normally (at the moment, and I’m certain she isn’t purging) but very worried that restricting food during the day will take over.

I’m still feeling really helpless about how best to help her

Silky your dd is doing exactly what my dd was doing at the beginning of our journey. I to felt reassured that she did eat well at dinner time but actually she was really unwell and the situation was much more precarious than I had allowed myself to believe 😕

I think your GP is talking crap, eating once a day and any signs of weight loss is not normal in teens. I think I'd go back and demand a referral to the ED service. Have you checked if you can self refer? In some areas you can.

I would also start FBT (family based therapy) that means 3 meals and 3 snacks a day, life stops until she eats and using every leverage to get her to eat. This is what the ED team will ask you to do. She will scream and cry but you have to push through.

We're plodding on here, dd has asked if she can go to a sleepover at her friends house. I said yes but I'll need to speak to the other girls mum first which went down well (not.) She also mentioned doing DofE and I said yes if you've recovered.

I'm hoping bit by bit dd will start to realise having an ED is actually pretty shit and choose recovery.....

@Girliefriendlikespuppies Thank you, I have been suspecting I shouldn’t feel reassured or complacent. Sorry to hear you’ve been in the same position.

We have been trying to get her to eat 3 meals a day but she point blank won’t eat breakfast or lunch. We will keep trying, but god this is tough.

@SilkyEars yep exactly as Girlfriend says, use whatever leverage you can to get her to eat 3 meals and 3 snacks. So take away her phone, she’s not allowed to go out and see friends. You have to make not eating harder than eating. Don’t accept no for an answer. Be uncompromising on this. It will be tough. She will scream and cry and tell you she hates you but you can’t back down. This is you challenging the ED. She is happy now eating dinner because the ED is allowing her that because she hasn’t eaten anything else for the rest of the day. This is exactly what my DD was doing and it turned out she was eating 500 calories or less a day. Her heart rate was dangerously low and she was admitted to hospital for refeeding.

@SilkyEars I also agree with others. We had no proof of weight loss but her wfh calculation was enough for her to be admitted for refeeding straight away. I hadn't realised the seriousness of the situation. Push for another opinion.

Proven Weight loss is NOT a criteria for an ED. It is all around the behaviours. The reason for 3 meals and 3 snacks a day is that it prevents the body tipping back into a starved state between feeds. Those recovering from an ED need to eat regularly. We were advised never more an 3 hours between each meal/ snack except overnight.
It would be very difficult for a teen can get all they need from one meal a day id say it’s impossible. Sedentary teen girls need around 2000 a day and there are not many meals that pack that punch! Please check if you can self refer or see a different GP. Have you watched Eva Musby on how to help with getting them to eat? She has lots of advice and tips. This sounds like a difficult and potentially dangerous situation. My DD never stopped eating meals until we called out the ED. She was being ‘allowed’ to eat by the ED after she had done enough exercise and only if she controlled what went in the meals. You have to stop all that…
And yes it is tough…. So tough….

@SilkyEars your GP is wrong, there is no requirement for weightloss. In our case DD (13) started restricting and what happened is she stopped growing, she didn't lose weight but she didn't gain anything as you would if you were growing in height etc. By the time I found out she was 10kg lighter than her friend who had been the same weight 1 year prior. My DD just stayed static weightwise, but she had full-blown AN with all the mental aspects, etc.
Don't take your GP's word, get someone else or just demand a referral.
Has the GP done her WFH calculation or even her BMI ?

We were seeing a community dietitian first though who said her bmi was low but not worrying. A fortnight later she had a wfh of 70%.
I think this shows that it needs a specialist point of view.

Girlfriend I’ll be interested to hear how your DD goes with her sleepover. Was it tonight? How are you tackling the eating?

DH and I actually went out for dinner tonight. It was meant to be all 4 of us going, DH booked it ages ago. I said to cancel but DH changed it to the 2 of us and said it would do us good to go. It was actually really lovely to get away just DH and I. DD recorded herself eating her evening snack/milk using a time-lapse video and sent it to me. It was a really good way for me to be confident that she’s eaten and I think she will do that again when she’s out with friends.