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

What horribly boys nan. My dh would have been furious but that wouldn't help the situation. Two steps forward, one step back

@NanFlanders the new plan sounds effective, I hope this is a good kick start for your DD. It’s a shame we can’t control other peoples comments - from the vile abuse your DD received to the unintentional throw away words of friends and family.

That's awful Nan I'm furious on your dds behalf, what is the matter with people??!! Ffs. I hope your dd can move past it, hopefully on some level she will know that those boys were just a couple of dickheads doing what dickheads do.
I'm glad you had a good holiday, I'm missing my holiday already!!
*
D1* my dd is quite young for her age anyway but yes lots of v silly behaviours at the dinner table or when out. I try and ignore as much as possible.

@Girliefriendlikespuppies So pleased Portugal was a success- hiccups notwithstanding!. I was feeling a bit bad about just taking DS away, but I was reading your posts and thinking there was a good chance we could be going next year :-)

Just popping on to say I was thinking of your dd lots watching the football tonight!! She must be so happy at the win, what an inspiring match.

Thanks @Girliefriendlikespuppies that's so kind! We were there and it was an incredible experience!
She went to training tonight, came out and said she thinks she needs to eat more!!
She is more determined than ever to keep playing and 'make' it...
She officially signs on at Arsenal next Mon at the Emirates and gets all her new kit.
The change in her in a year of being weight restored is remarkable. And to cap it all off she got her 3rd period yest (still v irregular but gynaecologist said that was normal until 18 and wasn't concerned)...
I truly hope and pray that your children can make a 'break through'. I know they can and I know recovery is possible. Getting there is awful but it is possible. Please keep believing everyone.

That's fantastic lots I love that your dd is saying she needs to eat more! When I was watching the football I thought it was so refreshing to see women with strong, muscular bodies. I really hope my dd noticed as well.

Lots was it you who did a distress tolerance course? Was that done via BEAT?

We remain very stuck here with dd eating enough but with no freedom. I find it so frustrating, it's two years of FBT this month and obviously we are in a much better place than two years ago. However it is still there every day, I keep thinking at some point she will just want to give it up?!!

Hi everyone. I hope you and your dds are all doing ok - sorry to read that some are struggling at the moment.

Thanks@myrtleWilson for asking how we’re getting on. It’s been a roller coaster of a fortnight. We had a terrible experience at A&E with a really unhelpful doctor. We waited for 7 hours with dd getting increasingly upset. I managed to get her a bed in a side room after 4 hours thank goodness because she was close to collapse. Then when the doctor finally arrived at 1am, he asked me what I expected him to do and told me that he couldn’t make her eat. I explained that she was 12 and hadn’t eaten for 2 weeks and that we’d been sent by the duty GP and I expected him to test her blood and do BP etc and then get an urgent psych referral. He asked in front of her if there was ‘anything wrong with her apart from autism’ and then made her get up and do the squat to standing test, having not checked her BP. He did the most basic bloods but refused to run the extra tests which are advised in those circs. He said her blood glucose was ok and told us to leave at 2am without any of the other checks being done and that we should contact CAMHS ourselves.

Luckily I managed to get hold of CAMHS directly the next day, who confirmed that he had seriously mishandled her care and they would be making a complaint. We got her BP and weight done at the GP that day so CAMHS could process her as an urgent referral. Her BP was really concerning and she had lost 8kg since I last had her weighed last year.

Since then things have been more positive - the upshot of the awful A&E experience is that dd is determined never to be in that situation again, which was a catalyst for her agreeing to follow the meal plan the ED clinic sent us. We had our ED consultation on Monday and they formally diagnosed her with anorexia and we start FBT next Monday. She’s been moved onto the next meal plan which is causing a lot of distress and resistance because she was only accepting the first one on the basis that it was to keep her alive but wouldn’t make her gain any weight, so a long way to go, but it’s nice to have a plan and some support. This summer has certainly not gone how I expected it to… still getting used to the whole thing which really felt like it came out of nowhere.

Sorry for the essay!

@Iambitingmytongue gosh what a roller coaster you have been on. I remember those early days sonwell trying to navigate a system which is ill equipped to deal with EDs. You have done so well getting her help and I hope now yoi are starting the process you feel a little more in control. It is so scary I know.
Your DD will not be happy with any increase in food but keep strong and keep making her eat. You have to be stronger than her ED voice and ensure she eats.
It is a very long road. But your DD is young and that helps enormously as you as a parent still have more influence and now a good incentive for her to cooperate (staying out of hospital).
If you can hit the ED hard by feeding as much as possible and tolerate her distress I am sure she can fully recover. The quicker she gains weight the better. The less time they spend in the starved brain state the more likely a full recovery is. Pls keep us up to date if you can and pls use the thread to main, gain support etc we have all been/ are there.
I also found Beat on line support groups very helpful for my own sanity.
@Girliefriendlikespuppies I didn't do a course on tolerating emotional distress but listened to a video on the Feast website which was helpful. I was saying far too much and trying to talk her out of her distress by reassuring etc and none of that was helpful. I learnt to reassure once, say I was sorry she was feeling xyz and then just sat in silence and was physically present until the extreme emotion passed.

Hi everyone
Not posted on this thread for a while so I thought I'd come back and update.
DD has been diagnosed with Crohn's disease, not a great mix with ED.
She's on medication and they wanted her to do a liquid diet for 6 weeks, she tried but then flat out refused so she's back on normal food.
ED is very much in control some days and other days I kick it's arse.
We're back at ED clinic tomorrow so should know more then.
Does anyone have any experience of ED and crohns?

@cantthinkofabetterusername I didn’t want to read your post and not respond. My work colleague has Crohn’s but no ED - I know it can be such an uncomfortable disease, my colleague eats a limited amount of food, foods that she is confident that she can digest easier - these tend to be calorie dense and she admits she eats ‘junk’ - but of course getting our DC to eat is a different story.

Hope the meeting with the ED clinic went OK.

Hi. Could anyone give me some advice on managing meeting with GP tomorrow? DS has ARFID but is not getting any support. He is 14 yrs and has lost weight over last month and he is now on about 11th centile. Last GP appointment didn't get us anywhere.

Hi mahjohn you need to ask the go to check your sons bloods, do basic obs (pulse, bp) and an ecg.

Have you worked out his weight for height?

How many calories roughly is he having in a day?

Check if you can self refer him to the ED services in your area.

Hi Girliefriendlikespuppies, thanks for your reply. Our EDS say they don't treat ARFID....so getting nowhere. GP says he doesn't need ECG. Have just checked height again and he is now closer to 8th centile. Can you tell me how to do weight for height please?

Mahjong there's a wfh app I believe that you can get on some android phones otherwise Lougle will work it out for you if she's about. She'll need his date of birth, weight and height.
Are you on the fb group? There's people on there that will work it out for you as well.

That's a bit ridiculous if the eating disorder service won't see him as there is a big overlap between anorexia and AFRID.

How much food is he eating? If less than 500 cals a day you will need to take him to a&e with the junior marsipan checklist.

Hi. I am not too sure if I have hijacked a post on this thread or how to start a new post but I am nearly sure my DD aged 18 has the start of an Eating disorder.

This may be a long post but just want to get all the info in first time so as not to drip feed.
She has had a lot of different mental health issues in the past but she always seems to overcome them. We were nearly at the stage of getting her tested for ADHD through a private physcologist but then she decied just before her 18th birthday that she did not want to go ahead with it. Her dad didn't want us to get it done either.

She is an only child of seperated parents both remarried and no other siblings. Her childhood was happy but a lot of week on week off between parents so I do know she has control issues now.

So now, down to the real issue at present. She has started losing weight since April due to what we thought was a very busy job in hospitality but now the weight is falling off her and she is skin and bone. She was weighed 2 month ago by docotor and they said she was a nromal weight for her height. 9 stone and she is 5 foot 8. She is naturally tall and slim anyway.

Since then she has lost so much weight and does not each much. For example today she ate ( and only because I sat with her and kind of made her eat) 1 slice of toast with half an avocado on it and a kiwi. At lunch time she had a bowl of soup and a slice of ham. later on 2 fibre now bars at like 70 calories a bar and I have just made her a cup of tea with 3 sugars in it and full fat milk. Told her it was sweeteners and slimline milk. She also ate a toasted ham sandwich. This is a lot more than what she usually eats but only because I lost it today and we have tried to tell her how sick she will get if she does not eat and she has promised to try.
I cannot talk to her as she just shuts me out, her dad said it is just the stress of work and she broke upwith her boyfriend ( she ended it all of a sudden out of nowhere)

My head is saying she is just stressed etc but my gut is seeing red flags everywhere.

She told me she is an adult now and that she will just go live with her dad if I do not stop perstering her.

I find the gps over here in Ireland so bad with mental health and literaly the last time we went as she was feeling depressed the doctor more or less told her to go for a walk and put her on a list to see the mental health nurse in March 2023.

Also each doctors visit is 65 euro and I feel they are uselss so I am a ot reluctant to to bring her to the doctor . She has been to counsellors, physcologists you name it. All private as the mental health care in Ireland going public is just useless.

I have no idea what to do now. What do I do? I am at my last straw and fel so helpless. How did I not notice how thin she was. I have no clue what she weighs now.

@Snuggleworm am so sorry you're in this position. My advice is severely limited because I don't know enough about the Irish systems. However, I'd encourage you to push and knock loudly on all doors you can find - GP, ED services, charities. My Dd is now 19 and we had a great (and justified) fear of her transfer from children to adults services. It does become more complicated when they are 17/18/19 and above in lots of ways.
Making her meals and sitting with her like you've been doing is great and crack on - and actually avocado and toast is great so hold on (for now) to what you know she will eat until you can get to a place where she's ready to talk. But I do know from our own experience that your leverage with an 18yr old is more limited than with a younger teen, plus a dual household throws a lot more into the mix.

Is she just restricting food or do you think she's exercising a lot as well?

@Snuggleworm glad you've now found the right one. Can't reply much now but will tomorrow x

Thank you for getting back to me.
Yes it seems to be the same thing here re adult services. We have tried private every time with other issues but she goes once or twice and then just gives up.

No she is not exercising at all but she was working in a very active job up until last week as she has just handed her notice in. She is exhausted so I think she just could not handle the pressure of it anymore.
I have no clue how many calories she should be eating a day but a rough guess would be 2000 and at the moment she would probably be only eating 400 or 500.

If her intake is a low as you say (mine was restricting to a similar level) then do think about A&E. I know its harder with an older teen but we found the threat of A&E did help. That said, it was in the context of her having had some ED support services so it wasn't just us saying it. Have you tried A&E before? Would she be shocked by it do you think?

I would not be abke to get her to go as she thinks I am the one that needs the counselling and that I am being over dramatic. Cannot even get her to go to the doctor. Even though so many people have ntoiced how think she has gotten. Even some older women in her job have asked her outright as they were concerned.
I am so worn out already and this is just the start of it. But she has been restricting since April but I didn't really notice the weight loss really until now as she is always quite slender anyway.

Her dad and I are separated so although he is very worried, he still thinks we should try a softly softly approach.

As far as I know she has not been making herself sick so I am afriad if I force her to eat she will do that.

All her life I am afraid of upsetting her and have always bent over backwards for her so we don't really do confrontation or she commpletely retreats.

Hi snuggle I'm glad you found us although sorry you've had to.

That does sound worrying, anorexia is caused by weight loss, loosing weight causes the brain to literally shrink and this in turn leads to a lot of irrational behaviours. Denial is also part of the illness unfortunately. It's a misconception that EDs are about control, it may start off as a desire to control something but once the biological processes start with weight loss the behaviours and anxieties are completely outside of their control.

As she's 18 it does make any 'treatment' a bit more difficult as she's deemed an adult however as she lives with you you can certainly set certain expectations and be clear she eats what you give her.

Family based treatment is the gold standard for treatment for someone with an ED and what this means is that the parents take full control over all food related decisions and they eat what you say they eat. The aim is for 3 meals and 3 snacks a day. Your dd needs to regain the weight she lost plus some and the quickest way to do that would be lots of full fat foods such as cream and butter.

It would be a lot easier if you can get her dad onside, EDs are v common in teens with ASC/ADHD.

If the intake is as low as 500 cals you should have a full medical review as they can go into heart failure. She will need bloods, an ecg, pulse and bp check. To gain weight she'll need to be on at least 3000 cals a day.

Have you noticed any physical symptoms such as periods stopping, hair loss, feeling cold?

Anorexia has a scary high mortality rate and softly softly does not work unfortunately.

If you're on fb the EDSUK group has some useful resources, there may be someone on there who knows the Irish system a bit better. Other charities that may be able to help are FEAST and BEAT.

I thought I replied to your message sorry.
Her periods are still here but yes I have noticed hair loss. Not so much her actual hair but lots of hair all over the floor and in the shower after she showers.

@Snuggleworm it's so hard at that age. My dd was 17. I managed to get her seen because her periods had stopped, otherwise she wouldn't have agreed. The turning point for is was her admitting she had a problem- but that's the really hard part to get to.
Luckily she was nearly back to normal weight as she turned 18 as I think anything within adult services would have been so tough for me to get any answers.
It's also hard if you have to pay for any appointments.
Dd had no idea what she was doing to her body. Would the shock of the effect on the body encourage her to go to a&e? I've got a PowerPoint that lists all the side effects. When I pointed out to dd that she was losing her hair because of the Ed, it gave her a massive wake up call because she'd always had beautiful hair.