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

Hi everyone, I'm new here. We are under camhs, early days. Dd, nearly 17, is very underweight and obsessed with calories. It started around 4 months ago. She has dysmorphia like you wouldn't believe. It's shocking how much she hates herself and how much plastic surgery, fillers etc she's saying she wants.

I'm devastated by it all. I'm not taking great care of myself. I find it hard to sleep and have awful dreams. I'm eating crap food at night. Avoiding people. I know I need to make myself stronger to be strong for her. Any tips on that would be appreciated.

HIi @Whyisthishappeningtous we are in the exact same boat only DD is 18 so a bit more difficult to monitor and manage. I feel for you so much and can relate to everything you are saying. First tip I would say is get private health cover if you can. Public health and hosptals etc are not going to be a great help by all accounts.

We had a really bad scare over the weekend where DD fainted and ended up in hospital and I never ever want to go through a public A and E again.

I can't really advise as I am just new here too and we are going through the same but some of the other parents on here will give you great advice.

Hi and thanks for getting back to me @Girliefriendlikespuppies

No we don't have a scales and never had so she doesn't weigh herself. She was only eating about 500 calories a day so to me, 1400 was a positive thing but I do know what you mean about calorie counting. As she is 18 I cannot force her to eat three meals a day and I also feel that she will lie anyway or make herself sick if I force her.
I have made an apointment for our ( useless) GP for the 30th of August to discuss her file from the hospital. She has also agreed to to go to an eating disorder coach so I have made an appointmenfor her too for the 29th of August. Her dad ( stupid pr*ck) is still saying we have to go softly softly with her ( I actually hate both of them at the moment as I see all his lying manipulative traits in her)

Anyway I reckon she has ADHD and I always have done as she has had issues for the past 6 years with different things. I also reckon she has inherited some of her fathers mental health issues and I am trying again to have her diagnosed and will go private. However, a private diagnosis does ot allow you to go on medication here in Ireland anyway.We still have to get a diagnosis from the doctor going through the public system. Like everything here in Ireland it is so so backward and slow.

Yes they checked everything in hospital and they said all bloods are normal, her BP was a bit low but then went back up again. Is an ECG where they stick those things to your chest yes?

Hi snuggleworm. Sorry you're going through this too.
I've been putting off reading this thread for a while as I've been scared of what I might find. I've read the first few pages and am overwhelmed at the support. It feels like I'm on a crash course at learning about this illness right now.

I know, it is just awful. I think this has had to be the worst time of my life with my DD and she has been through a good few things but this is so shockingly real.
Lets hope we can all overcome this but I fel it will be a rocky road to recovery and not an easy one. So sorry you are going through this too.

Hi why and welcome to the thread although sorry you've found yourself here.

How are you finding Camhs? Are you doing FBT?

In terms of self care it's really difficult, i had to take myself off to cry and wail at times. Sometimes I would make an excuse to sit in the car just to cry 😢 I think though allowing that and acknowledging it is so so shit is okay.

I would try and meet with my friend and even though they couldn't understand the situation at all it was nice to talk about something other than food for a bit.

Do Camhs support you? I used the support worker as my own source of support for a year. Dd wouldn't engage with them at all so I spoke with them separately.

The body dysmorphia is terrible, dd told me she has thunder thighs this morning 🙄😢 I just ignore it as much as possible.

Hi @Whyisthishappeningtous sorry you are in need of this thread but I know you'll get tonnes of support from others on here. You do need to look after yourself as for many of us it is a long and exhausting battle. We're all individuals and react differently but what helped for me in the early days was reading up people like Eva Musby or Tabitha Farrar, looking at blogposts, looking at webinars from places like Orri. I followed a few ED people on social media including a couple of sufferers that my Dd followed - that was bizarrely helpful as I could see patterns of behaviour that I had seen in her and one of them would film herself eating meals and I could hear her parents in the background doing distraction techniques so for me it was a mini coaching experience.

If you have any question or worry please don't be afraid of voicing it here - we all know the feelings you're experiencing

Snuggle I really hope this is the start of a turnaround for you and her. It's such a horrible situation to be in.

@Whyisthishappeningtous have you had any dealings with camhs re her weight? My advice is to ramp up the pressure on the nhs because once she gets to 18 you won't get anywhere near the support. Do you know her weight?

Thank you so much girliefriend & myrtle.

We've had two appointments with camhs so far, plus the assessment. The team we're with seem to be good. Dd is responsive to it on the whole, doesn't mind being weighed etc, although after our last appointment she was angry with me because of a few things I said that contradicted what she was saying. But at least she knows I wont lie so there's no point in her lying.

So yes we are doing FBT. Dd is happy for me to prepare meals but still anxious that I cook hers separately weighing out her ingredients. I must admit I've pandered to it because I'm worried she won't eat. However, the last two days I've gained more control and kept her away from the kitchen. She ate the food last night and we sat there for the 30 minutes and probably had the best chat we've had in months. I felt some relief. Then I went to make breakfast this morning and all hell broke loose over semi skimmed milk.

I guess this is the way it goes. Ups and downs.

Is it usually the case that one parent takes on the 'caring' role and the other gets left out. Because that's what's happening here. Dh is a kind caring dad but he can be quite flippant with emotions and takes her behaviour too personally. I've said he just needs to keep away while I'm coping with her and not jump in when she's being difficult. I really can't cope with the two of them going at each other. All I can concentrate on right now is going to the appointments and getting dd to eat.

@Whyisthishappeningtous Just on the subject of sharing 'care', I did start off doing it all, as DH can be a bit tactless and say triggering things - and also - like yours, take her comments to heart. But for the sake of my own mental health, we now share supervision, taking it in turns with snacks, and he's got much better. We also have made sure that we have each been away for a week and the odd weekend, either alone or with DS. You do need to look after your own wellbeing too. Sorry you are going through this, but I've found this group to be a great source of help.

@Whyisthishappeningtous sorry you have had to find us. It sounds like you are making amazing progress and I am glad you have some professional support.
Keep trying to move her away from the kitchen and any food prep involvement. In fact maybe your DH could help with this by distracting your DD during meal prep. My DH did this when he could and it was something be could do to help that he understood. He never really read up enough on EDs and so was not as clued up as me and very often contradicted me or undermined what I was trying to achieve. I think the carer that does not attend medical appointments or spend time on threads like this doesn't always get it as much as the primary carer.
My mum also helped once a week supervising my DD (not eating but stopping her exercising) so I could attend a 90 min Beat support group on line. I thoroughly recommend them. That wad my self care...90mins a week. For about 6 months. Its exhausting. I couldn't leave my DD alone ever as she exercised.
As the weight goes back on it does calm down gradually.

And 'playing along' with her desire to be involved in food prep is playing into the hands of the ED. You really have to try to get her out of the kitchen and used to eating whatever you give her. All hell will break loose but you get through that distress, get the food eaten and move on. A mini victory against the ED.

Hi everyone, how are you all doing?

Am just popping on to share some good news (and some hope for those of you still mired in the weeds of eating disorders).

My daughter (19) has been in recovery for about a year but as ever with all things eating disorders there are relapses and setbacks (the snakes and ladders analogy still stands!) She is still on a meal plan - albeit provided by her ED experienced PT. She flew out to Barcelona with her boyfriend this morning and has just sent me photos/voice notes of the tapas she ordered tonight. Am so proud and hope this gives others a sight of a better future for us all....

That's so lovely and also reassuring for you. DD went away with friends for a week and she made the most of the all inclusive option!

Lovely to hear @myrtleWilson just left my DD at home making a bacon sarnie! She hadn't eaten bacon for the whole period of her illness. Started again in recovery. Now it's a go to snack. Never thought we'd get here...

Why definitely keep your dd out of the kitchen and do not discuss what's in the food at all, the stock phrases 'this is exactly the right amount' and 'this is exactly what you need' covered all questions about what was in her food. The quicker you can get the weight back on your dd the quicker you'll see a reduction in her anxiety.

Myrtle that's wonderful, it's fantastic when you see them eat something 'normal' my dd had some pick a mix with her friend (in her own words she said 'I don't know what came over me but I just fancied some' 😁

I just said that's completely normal but was doing a little happy dance inside!!

Thank you everyone. It's so uplifting tp hear positive stories and it gives me much needed hope that we can beat this.

Dd keeps saying she can't put weight on and can't live with herself if she does. She says she hates how her legs used to be. I don't know what to say so I just tell her not to think too far ahead and just concentrate on eating enough day to day.
How did your dc deal with gaining weight?

I have massively struggled with using the refeeding technique (taking control of the kitchen, all food) with my 17 year old. One reason is that I am a single parent with no outside support, so trying to do all that and parent other children is exhausting. I also have to work, luckily mostly from home, but I do have to leave the house! The other is my 17 year old is highly but passively resistant, if she loses control she engages in a range of behaviours from removing herself from the table and going to her room, not eating or drinking or speaking, purging at night time when everyone is asleep, going for a walk for similar purposes, or even running away from home/leaving and not answering phone. She has a long history of school refusal as well.

The more you tighten control on her food (which she absolutely needs), the more these behaviours ramp up, especially the night time binging purging which starts when I've fallen asleep. I have to sleep at some point, I can't stay awake all night. She also had a supported feeding session at the hospital which was a disaster as she refused food, water, to look at them or speak for many hours and we just had to leave. The clinic now admit she's a 'complex case' whatever that means!

Her behaviour is highly resistant, and always has been, not just in relation to eating disorders. She does not appear more anxious or depressed now she is in the midst of an ED, in fact, the opposite is true, she's more engaged with the world and happier as she thinks being thin is where it's at!

I feel a bit despairing about it all, we don't seem to fit the model, after putting the Stage 1 refeeding into practice, she weighed less and her enzymes were disrupted due to so much secret purging. It tipped her into more extreme behaviour sadly. I've no doubt if I tightened the screws further (I have taken over shopping though) she will leave home altogether, she's already gone for a couple of days at a time.

I have never found escalating helps with very resistant teens, I've been through this with her school refusal which was absolute and no plans/headteachers. I'd be interested to hear other people's thoughts on this or just some sympathy. I have a friend whose anorexic 14 year old responded very well to supported feeding and parental control of food, it's just provoking worse and worse behaviour in my teen...

I love to hear the positive stories by the way- the one about your dd going on holiday is fab! I just hope we can get there too.

Hi, @FarFarFarAndAway - my Dd joined CAMHS at 17 and my impression was that most of the thinking/techniques were aimed at younger teens. Eventually, Dd was matched with support leads for both eating and self harm that recognised that a near adult needed to be treated differently but it did take quite a bit of prodding on our behalf for CAMHS to recognise (to be honest I think it was looming 18th that meant they suddenly threw everything at us because they feared the cliff edge that was coming. Be sharp elbowed is the best advice I can give.

Just to add, we focused on DD's hopes/aspirations. Her friendship group were going off on holiday after their TAG a-levels - so we'd ask her to think about what she wanted to do in the next year and then (with psych help) get her to think about whether she'd be able to go on holiday etc and what may need to be in place to make it happen. That helped us in terms of taking it away from the here and now and thinking about her future - for some reason DD could imagine a future without ED control in a way she couldn't in the present.

Finally -sorry! I should say that we had started to see embryonic desires to recover. For us, this was DD watching ED teens on social media who were trying to recovery. It felt like she was practicing how to do it by watching others do it. We talked about that a lot in therapy.

@myrtleWilson thank you so much for your comments, it means a lot to me anyone has replied, I've read a lot of this thread and I think the thing we all have in common is feeling a bit desperate, alone and wondering what the hell to do!

I think you are right, my dd is used to working as well, earning her own money, staying with friends, her own independence and if she had her choice, she says she would not go to the hospital or CAHMS (CAHMS have been very slow, one assessment in 5 months) ever, but she's quite compliant if I take her and we do this together. She just removes herself, withdraws or escapes (leaves house, hospital) if presented with food/eating she doesn't like, she doesn't speak or get cross or anything, just complete withdrawal and refusal which is why if she went into hospital (which she is threatened with weekly but manages to maintain enough to avoid it cleverly), she would have to be tube fed and likely leave and purge endlessly which is what she does when overwhelmed.

She also has pre-existing psychiatric diagnoses and trauma which pre-date (but undoubtedly have contributed to) the ED, so these things are always complicated. Keeping her indoors, in bed, away from friends/family or college is how she lived for two years of severe depression/overdoses, so I'm not sure putting her back there again is the right choice.

I think you are right about positive motivations- I do not go out with her unless she's eaten acceptably (protein, carbs) as I don't want her fainting, and motivating her with trips with friends, and family days out works very well. I like your idea of the longer-term motivations as well.

Reading these stories makes me feel less alone but also overwhelmed by how hard it is on the parents, I have been on the receiving end of CAHMS disapproval (amazing how they managed to make me feel shit in such a short amount of contact!) I cannot take more time off work as I'm already on informal pathway of performance management and it will be made formal with any further time out.

Thanks again for making me feel less alone, and I've really appreciated your insights (esp about therapeutic exercise which I think would be another avenue for my daughter as she is very motivated by being strong/muscle definition, but also see the dangers, she is currently on a gym ban due to lying/escaping my clutches!)

Hi, how is everyone?

Just thought I'd share this Orri webinar about preparing for Uni for this who may be interested twitter.com/orri_uk/status/1562349285492281345?s=21&t=xSWaYlmwoD4Kw1QyyJtqLA

We're not too bad, getting very nervous about the exam results tomorrow!!

Dd is up and down with her eating but the last couple of days have been a bit better. She's switched from porridge to granola for breakfast which in some ways is good but I think it's probably less calories.