Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

Thanks @Rustnot - really welcome your thoughts/insight. DD is adamant that she doesn't want to be in ED services - she had thought for a while (including during her time in CAMHS) that the ED service (for her) reinforces her ED rather than liberates her from it. Her underlying psychological needs have surprised her first MH worker - for example DD thinks being sad is being weak - which isn't in itself too radical but the world DD has created around that thought is significant - to the extent I was genuinely surprised that the adult team wanted her to have very regular engagement.

I get what you're saying about weight check in's but I think DD's view point is "I'm changing my mindset about my body - it was damaged and weak and now I want it to be healthy and strong. I am going to do this through eating and strength based exercise. I know my body will change and I have to deal with this but part of my dealing with it (in terms of a transition process) is I don't need to see numbers"

I know the anorexia is still there but I do believe DD in her view out of the anorexia - and up until yesterday, she's been right. And to be fair to her she managed to eat well yesterday and today. I'm just so furious that the therapeutic opportunity was trashed.

I think the lack of understanding of EDs within CMHTs is quite shocking - it really does seem very niche. Definitely try to speak to somebody else - I'm assuming your DD is under the care of a psychiatrist within the team? I have come across some amazing professionals, some utterly useless ones and some well meaning but misguided ones. The input from those who really care and know what they are doing has been life saving, unfortunately you also have to deal with those who are less competent sometimes, and I know they can actually make the situation worse.

We had a brilliant time at the concert last night but had our first experience of eating out with calories on the menus. We went to a Frankie and Bennys, I asked them for a calorie free menu and they told me they didn't have one! That's not right is it?! I thought they were all meant to have a calorie free one?

I intercepted the menu so dd didn't see it but it then meant she was already thinking about it and it did make an issue of the meal which was a shame.

Dd also now knows restaurants having to put the calorie information on menus, it is going to be impossible to protect her against it.

On the plus side we had a great night and the band were brilliant, we're knackered today though!!

@Girliefriendlikespuppies glad you had a great night! At the moment restaurants don't have to provide a calorie free one but Hope Virgo (ED campaigner) is pushing govt to make it mandatory...

I can't believe it's not mandatory already, I'm feeling a bit sick at the thought of how much calorie information dd is now going to be bombarded with. It's literally everywhere and completely in your face. For dd this is a disaster.

We went to a American diner type place for lunch Ystd, dd had already seen the menu as it was outside and I wanted to check what was on it. She did okay for choosing the main course (nachos) but really struggled with pudding which was a milkshake. She originally went for the lowest calorie one which I said no to and then went for a medium calorie one. If calories weren't on show she would have chosen a high calorie one as it was her favourite Oreos.

It's so disheartening after all the work we've done.

I've noticed a lot of ED behaviours sneaking back in, dd has grown (now taller than me!) and I'm thinking her wfh has probably dropped a bit. She also tried on some size 8 jeans which fit her which rang alarm bells, she has been a size 10 for ages and ideally I'd like her to be closer to a size 12. She's naturally a tall, broad, athletic build which we all are in our family.

I insisted she had her snack Ystd and she really struggled with it 😓 this feels never ending.

I know if we go for meals out, DD will not choose the lowest calorie option - because she knows I'll just say no. But if she was out with friends I'm sure she probably would. I can't tell them to all ask for menus without the calorie content can I?

I've eventually read Tabitha Farrars book 'love fat'. Whilst insightful, I'm not convinced it's the right one for DD to read. Which have you all read?

Nc that's exactly the same for my dd re not choosing the lowest calorie choice if I'm there as I'll say no but she definitely would if with friends. What upsets me is that once dd knows something she can't unknow it iyswim, she will always know that such and such is this many calories compared to something else.

I've just been putting my tuppance worth in on another thread about this.

I read Fear of weight gain by Tabitha Farrah, I thought it was good but dd didn't want to read it. I think she's written a few books about brain rewiring which I think would be good although I've not read them myself. Will attach a pic of the one I'm thinking of.

I've just signed this. The problem is that there's more than one petition for the same subject so no idea which is the best. This has a lot of signatures though.

chng.it/yh4gQHcqPh

Signed nc ✅* *

@Girliefriendlikespuppies

Signed nc ✅* *

Thanks. I want to share the petition but at the same time DDs friends IRL don't know what she's been through to the full extent and putting this on FB seems like an invasion of her privacy.

I've just signed too. Thanks for the link. It's a massive step back for my DD (18) too. She won't eat out with us since this started and we had been getting to a much better place (wr since July but lots of food anxieties remain) . She works in a restaurant part time and all the customers are having v triggering conversations now. What a PIA this is

With regards to calories on menus I am so frustrated by this (signed the petition and so has DH and PIL). I don’t know if it has been said before on this thread but for a long time calories and traffic lights have been printed on packaged foods in shops and this hasn’t tackled obesity, why would printing this information on a restaurant menu work? I am new to ED’s and I can see the negative impact on eating out, a challenge in itself. What next, calories on school menus?

Easter Sunday, last year DD ate some chocolate (we were unaware of the ED then but looking back she was restricting). Let’s see how today goes. Hope you are having a good weekend holiday.

Not a great start to Easter for me, I've just tested positive for covid!! Feeling rough, high temp and cough 😷

Am blaming the concert we went to last week.

The other thread on calories on menus really highlighted how much ignorance there is around EDs and how little some people care about our children. It's really upsetting tbh.

Hey all, just jumping on quickly ref the calories on menus. We went to one of Raymond Blanc’s brassiere chain on Saturday. I called ahead and asked if they had calorie free menus and they said they did and they would ensure that our table were given them. It was really helpful as I know DD would have really struggled otherwise. But last week we ate in McDonald’s on a day out in London. DD left me to order so she wouldn’t see the calories but they’ve bloody well stamped the calories all over the packaging too! I couldn’t believe it! It’s so ridiculous.

Can someone point me to the other thread?

I'm not sure I'd recommend the other thread roller unless you want to get wound up!! I keep trying to walk away from it but then someone else says something inaccurate and I can't help myself 😂 the thread is called something like Calories on menus - just why?

I'm cross about Subway putting the calories all over the large menu they have above the counter.

It makes everything so much harder.

I'm still feeling very ropey with covid, luckily dd has plans with friends today so I can spend the day on the sofa!!

Hi all, I'm so relieved to have found this thread. I hope everyone is doing OK x.

My dd is 14 with a dx of aspergers, anxiety & depression. She's been on a waiting list for CAHMS for just over 2 years now. We've been at the gp and psychologist who have both agreed that she has developed very disordered eating patterns. She tries to keep her calories to a max of 400 per day. Anorexia has been mentioned at all our appointments so fat but we have no definitive diagnosis. At the moment her weight is the low side of normal but is noticeably dropping.
In the last few days I've noticed she has been fasting all day and then she binge eats towards evening. She is very confused as to what is happening to her and doesn't like how it feels. I'm thinking maybe it's the lack of control when she's binging.
Does this sound more like bulimia? She isn't purging. I've been keeping a very close eye.

Many thanks to those of you who replied to my previous post. I really appreciate your comments and support. It is taken me a while to reply because I suppose I’ve been processing everything and trying to deal with it too.

it has become clear to me that my 14 year old daughter does have a problem with food. She’s not refusing to eat but has really become very fearful of some foods and has been trying to select whatever she perceives to be the ‘healthy’ option. She has admitted it now- which is progress- but is also much more unhappy. Is this usual? Is it the loss of control now?

I am as sure as I can be that she is not purging in anyway it over exercising. She is eating 3 meals and 3 snacks a day and my husband and I supervise her and she stays with us afterwards. However, although she is eating what we put in front of her there are times when she becomes very distressed. How do you manage this? So far as I have just kept calm, held her hand, talked her through it. But it is so upsetting to see. She tells me that when she has to eat these fear foods or quantities greater than she would like she experiences intense thoughts and feels like killing herself. I am heartbroken but trying not to let her see it.

Her school is being supportive but she’s not in a good enough place to be back and I don’t think she would eat enough lunch/snack every under the supervision they offer. We are seeing the paediatrician next week and I imagine they will refer us back to CAMHS? I don’t know how good their support is in this area but I feel like we need something. I have also been in touch with a private therapist who specialises in teen eating disorders but she has a long waiting list and as I understand it my daughter really needs to put weight on before therapy becomes worthwhile? I’ve done lots of reading- the FEAST website and Eva Musby and have read the new Maudsley method book. We’re just taking it a day at a time with the 3 meals and 3 snacks. Is there anything else we can be doing in the meantime?

I feel so guilty we have got to this stage and I hadn’t realised there was an eating disorder. My poor baby. Thank you for listening. It feels like things have got much worse this week- in your experience do things get worse before they get better? At least she is talking to me, we’re getting food in- I just keep hanging on to that and taking it day by day or even hour by hour.

Lastly, could someone work out her weight for height for me please? I’ve agreed with her we will only weigh once a week. Last Saturday she was 6st 5 and she is 5ft 6. I know it will be low but given the food she has taken in this week and the fact she has pretty much been on bed rest all week, I am hoping beyond hope there will be a weight gain on Saturday. At what weight for height did other children return to school?
Many thanks for your help.

Oh God have had a nightmare trying to access the site since the update.

Anyway

Treacle your dd sounds exactly like my dd did at the start of all of this, it’s a bit of a misconception that someone with anorexia will not eat anything. My dd would starve herself all day and then binge on biscuits in the evening. You need to start 3 meals and 3 snacks a day, has she had her physical obs checked? She needs a referral to the ED Camhs service asap, generally they see new referrals quite quickly.

Fay well done on the 3 meals and 3 snacks, yes it is completely normal for their mood to massively drop once you start FBT. My dd also said she felt suicidal. I found she went through stages a bit like the stages of grief for us it seemed to go denial, depression, anxiety, anger.
Of course she moved in and out of each stage and but generally we seem to be passed denial and depression at least!

I would suggest to both of you joining the FB group which has useful resources attached to it. They can also help you with WFHs etc the group is EDSUK.

Yep, all her physical obs checked last week. Low BP and heart rate. Blood sugars were 3.5 m/mol. Weight is low end of normal.
Gp sent an additional referral to CAHMS but we haven't heard anything yet although I've been ringing them everyday.
The last two days have been better. She has managed 3 small meals. No snacks but we will work on that. The constant battle is exhausting for everyone.
Hope everyone is doing OK and has a positive weekend.

Treacle is it specifically the ED services your dd was referred to? Normal Camhs won't be any use to you as their understanding of EDs is minimal. Low blood sugar, low pulse and bp are all signs your dds really struggling, has she had an ecg and blood tests done?

Our week has been rubbish tbh, I've been ill the whole week and not able to go anywhere or do anything (thanks covid 🙄) still not right now and meant to be back at work tomorrow!

Dd has had to entertain herself and I have seen loads more ED behaviours resurfacing, I think the ED takes any opportunity to sneak back in and take advantage.

It all feels a bit hopeless as I'm not sure she's ever going to want to get well and tell the ED to f**k off once and for all. I'm not sure I've got the fight in me to keep on it forever 😥

That said she is still eating okay ish and I'm aware it could be a lot worse. It's just frustrating more than anything.

We are in Ireland and as far as I know there is no specialist CAHMS team for Eds. It's an appalling service, I've been trying to contact them daily for the past few weeks and no one answers the phones. She's been on the waiting list over two years now. Everything is such a battle, it's exhausting.
Blood tests were done a few months back and were fine other than her iron stores. Gp didn't mention bloods or ecg at appointment. Should I get them done?
We had a relatively ok weekend but last night she had a massive binge. So today she's refusing to eat anything. We had a massive row over 8 bloody calories this morning!
Girlie, hope you and dd are doing a bit better today. Its a constant battle and so exhausting x

I know I don't post very often but do try and read the thread, and really relate to all your situations.
I have had a telephone update with my daughters consultant today and despite being in this situation for 8 years, I feel really upset tonight. My daughters consultant wants my daughter to go into hospital over the summer, as a voluntary planned admission. They want to try and get her BMI to 15/15.5 over the summer . The consultant thinks a planned admission will be less disruptive to her life/university than an acute admission, which could happen at any time. There are so many pros and cons, but my daughter has not agreed to anything yet . There are also concerns that the thought of going back into the ED unit could trigger suicidal thoughts for my daughter- there was a significant attempt 3 years ago when we were in a similar situation.

Just feels like groundhog day, and I feel overwhelmed tonight with it all. Same battles, same conversations, same outcomes again and again. Nothing anyone can do, just needed to vent x

@Bluebuddha10 am sorry - you've been in this situation for such a long time - I honestly don't know how you keep going (although I do know - you don't have many options).
What is your gut instinct with your DD - will she see the rationale for an admission in summer to allow her to continue at Uni or do you think she'll fall the other way?

Blue I'm sorry things are so hard, I think if it were me I'd be quite keen on the voluntary admission as a starting place. Has she lost more weight?

Treacle if there's no ED service then you really need to read as much as you can on FBT as it sounds like you'll be doing it all on your own. Are you on the fb group? It's not perfect but does have some good resources.

We're doing okay ish, I'm struggling a bit with dds lying though. She never used to lie like she does now, not even about food but other stuff. I have a rule that she's not allowed her phone in her bedroom overnight (she would be on it until the early hours) and a few times she's blatantly lied about putting it downstairs. She also lies about taking her vitamin tablet and I'm thinking of giving up on asking her to take it as it seems pointless tbh.

I literally don't trust anything she says anymore 😕

@myrtleWilson @Girliefriendlikespuppies
Thanks both. Feel a bit calmer (resigned) this morning.
Its so complicated. She has had so many admissions, with weight at least partially restored, but always loses it once she is discharged. I guess it makes me feel that we've tried inpatient treatment so many times, and it just doesnt work for her. Although there is also a chance the next time could be different. It works as in, usually gets her out of a crisis, and keeps her alive, but long term nothing changes.
There are pros and cons. It can be a really toxic environment, with weird competitiveness around being the most thinnest, and illest. Anyway, just hard being in the same place again. Because she lives away during uni term time, I think I get lulled into false pretences, thinking it's all ok, well at least stable.
She said last night, that's she upset that this might happen and that she is going to try and use the fear to motivate her to fight the ED thoughts a bit more, try and gain some weight . That's a start I guess, but I know she finds it really hard, and struggles to stick to the plan. We've had conversations about getting to a BMI of 15, on and off for years . But I'm going to do my best to support her, see how the next couple months go. It's just such a worry all the time isn't it?