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

@D1ANA22 Keeping school hours seems sensible. I'm also wondering about voluntary work - might be more flexible than a PT job (she wouldn't accept being supervised for meals and snacks, so limited to a couple of hours really)

@NanFlanders our DD is 15 so work, voluntary or otherwise, may be hard to arrange due to her age. I do think working is a good idea to tackle the social anxiety that AN patients suffer, exposure to the real world.

It's really hard Nan, I'm hoping dd will get a pt job as she doesn't do well with too much time on her hands. She had a Saturday job which I thought was really good for her but she decided she didn't like it and handed her notice in 🙄

As your dd is more unwell I think I'd keep the motivation on day to day things, can her phone be used as leverage? I took dds off her a few times, once I felt she'd eaten enough she got it back. I also used the dog walks, short trips out, the promise of taking her to a favourite shop as incentives.

Dd admitted to me yesterday that when the anorexia was at its worst she lied about putting toothpaste on her toothbrush as worried about the calories in it!! She seemed to accept this was madness which I'm taking as progress.

I also got her to have an ice cream Ystd afternoon (I made some vague sounds about it being part of her lunch). She asked if she could have watermelon instead and I gave her a look 🤨 She ate the ice cream 😁

It's prom day today, I'm praying she has a good night and feels as beautiful as she is.

Name change in some cases I think a complete break from their phone and the internet is needed. I would tell your dd if you find one triggering thing on it you will take her phone away. She may actually be relieved to have a break from it. My dd wasn't allowed any SM until she was 16, now she is 16 she's got Snapchat and tiktok but hasn't actually wanted to get instagram.

I think SM is toxic at the best of times tbh and will not help an already struggling brain trying to make sense of the world.

@Girliefriendlikespuppies Hope your DD has a FANTASTIC time at prom. Dog walks are a good idea - we have a friend who foster guide dog puppies who is always happy to let DD walk them - also shops (Home Bargains always a hit 😂). We have used the phone as leverage in the past - it worked three times, then she just shrugged and/or got abusive. (We ended up returning it eventually as it was her only way of contacting her friends and she was already pretty isolated as off school.)

@Girliefriendlikespuppies Thanks. You are right although she needs it for to and from school and I want her to be able to message her friends but I will block internet access etc. I don't even mind her watching Netflix. It's just those dumb tie Tok videos etc of girls showing off their figures.🙄 I am also going to have to think about some sort of routine / activities for her for the summer to keep her mind off the ED. She starts a new school after the summer. Hopefully a fresh start will help.

Thanks Nan she did have a fab time at prom!! She looked absolutely beautiful and the dress was perfect on her. Worth all the expense and stress.

Also ate well Ystd.

Lots of push back today though as I'm sure the ED is not happy she enjoyed herself and ate freely.

Yay to fab prom times - hopefully once the ED shuts up for a moment (we live in hope!) she can reflect that she was only able to go to the prom by battling the ED and that way a more opportunity filled future awaits .....

Hi everyone I hope you don’t mind me coming back on after so long, I stopped posting because we weren’t making any progress and I was finding it too hard. Have still been reading every now and then though.

So in a nutshell dd was diagnosed in October. Initially gained well on the refeeding plan but then maintained for 5 months. She gained a little bit in may when her Ed nurse threatened to pull her out of school and stop her sitting GCSEs but has maintained again since. She’s sitting at around 86% wfh. She looks healthy now but is still experiencing headaches, tiredness, dizziness, nausea so obviously still needs more calories. She is adamant that these physical symptoms are down to some mystery disease/illness and tells me on a regular basis that I don’t care about her because I won’t take her to the gp for tests every week. She’s on 100mg sertraline but I’m not sure that’s enough.

right from the beginning her hiding food has been a problem and it seems to be getting worse again. She refuses to come out of her room when she’s at home and it is absolutely disgusting, you can’t see the floor or any surface for clothes, rubbish, papers, jewellery etc. Food is hidden amongst all of this, down the side of her bed, inside her pillow cases, in her drawers, in bags… Obviously her no longer being at school means I have more opportunity to supervise every meal and snack but I still have other children to get to school and activities etc and I know she’s going to wait until I leave the house to come down for breakfast etc and then hide or throw food away.

Also we are struggling with the cost of groceries at the moment and the amount of wastage is really making me stressed. I just don’t want to bother giving her a smoothie or hot chocolate or whatever only for it to be thrown away. I know I need to give it to her but we’re throwing so much money away that we don’t really have spare.

Sorry for such a long post, I’d appreciate any tips, at the moment I feel like I’m so worn down that I can’t see the wood for the trees. We have no relationship anymore, she hates me and often I really dislike her for the strain she is putting on our family and for the constant threat of suicide we’re under. CAMHS say to put the food in front of her and set a timer then remove the food when the time is up, when I do this she picks at it, maybe eats half at most. When I take her phone etc to get her to come down for meals she self harms and tells me I’m abusive, or runs out of the house telling me she’s going to kill herself.

@Moomarre I'm so sorry. I have no words of advice but hopefully you'll get lots of support on here.
It's so hard with the cost of food. I spend a fortune still, bit at least it's not being wasted. I'd be very resentful if hard earned cash was being thrown away. But like you say, she needs the food.
I hope someone else can give you helpful tips.

so sorry you're having a hard time @Moomarre - when you set a timer for food and she doesn't finish it, what happens then? Do you provide a fortisip (or similar) and does she finish that?

We had to be very strict over timings (it actually does help them as the less time spent on food during the day the less time they have to listen to the ED voice). Our Dd would get heightened anxiety pre and post meals so we would do diversionary activity so for example

10 mins before meal play UNO or similar - get her using her hands so not available to start anxiety pinching which would lead to self harm

Meal - eat within 25 mins with lots of distraction - watch the news or similar so you can chat

25 mins - if finished do post meal distraction (often go for a drive - get out of the house)

If not finished provide fortisip

If fortisip not drunk rings CAMHS (if in office time) or CAMHS emergency if out of office)

If meal was not finished we'd be on alert for self harming so would use distraction techniques (holding ice cubes for as long as she could, throwing a bean bag etc)

It feels awful but I think it does work as you're showing her/the ED there is no other plan and the ED really doesn't want a CAMHS specialist on the phone. I've said before I wish we'd accessed emergency line sooner - we thought it was for people in dire straits but every time we called we were treated with kindness and a member of teh team would speak with us and with DD.

@myrtleWilson Sorry to butt in to your helpful conversation with @Moomarre, but was really interested to hear about calling CAMHs is your DD won't have Fortisip. Ours has always refused it - and as she never finishes a meal (will usually do snack) we end up three times a day trying to get her to open her bedroom door to take Fortisip. What do CAMHs do or say when you call them? Does it have the desired impact?

Hi, I think we had agreed it in advance with her support worker as we were pinballing in and out of re-feeding cycles and when we'd reached fortisip refusal we were usually at self harm stage - certainly moving from amber to red on traffic lights. The team member would speak with Dd and usually be able to calm her down and then she'd be able to drink the fortisip - I think a different authority figure helps.

( in a similar vein when Dd had meal support at home she ate everything in time allocated - like a model patient! I did wonder at times whether they thought we were exaggerating but of course they knew the difference! )

To be honest though once we had run through that experience a few times Dd and more importantly the ED knew what was coming so Dd had a 'get out' to tell the ED 'if I don't eat now I'll just have to do it with Camhs'

How does your Dd have the fortisip - we decanted it out of the bottle into a coffee cup with metal straw and she'd cover the top of cup with her hands so she couldn't see it. I think the straw helped.

Hi. We've tried every which way - decanting, straw through the foil in the bottle.... Very stubborn. Has been to hospital 4 times to have it through an NG tube rather than drink it "because then it won't be my fault". Will speak to CAMHS though - worth a try!

I wish there was an agreement with Camhs and the hospitals that when they point blank refuse something you can take them into hospital and it will be an automatic ng feed. That would send a strong message to the ED that we're not pissing about.

Moom I'm sorry things are so hard. I hear you re the cost of food, I've had to take on extra hours at work as I spend so much on food and am relying on my mum to help out some months as well. Bearing in mind it's just dd and I I spend around £85-100 a week on food and that's in Aldi!!

In your situation I think I'd gut dds bedroom and have a firm no food or drink in her room rule. Are Camhs offering any meal support? You could push for that. It sounds terrible but I would go ear blind to the threats of her killing herself. Dd constantly threatened suicide, she told me she'd rather be dead than eat/rather die than gain weight.

I just did what I could to supervise her, did regular sweeps of her room for sharp objects, kept an eye on medicines (incase of an overdose) and when she was really bad slept on her floor.

If she runs out of the house ring the police and report her as a missing vulnerable young person. This will also flag up to Camhs that you're struggling.

@Moomarre and @NanFlanders I can't really add anything further than the advice that @Girliefriendlikespuppies and @myrtleWilson have provided. Our experience is that DD hates fortisip, possibly because it is what the hospital 'forced' her to have when she was admitted and also its a high calorie liquid and sufferers hate liquid calories. In hospital it was provided as a substitute for missed meals and snacks - we brought some home and used it for missed food - but the resistance was difficult. We keep some in the fridge and she knows that for any refusal she will have to have one - if this happens we are used to the fortisip being dragged from the fridge and thrown around the kitchen. We put it is a glass and use a straw and use two for a meal refusal and one for a snack refusal, sitting with her constantly - if not drank then the next step we say is hospital - we have not got that far but I agree with @Girliefriendlikespuppies if there was a threat of ng tube immediately at hospital for every refusal it would help parents bully the ED. Our DD may think that and we will let her do so.

Our situation is similar to yours, DD's room and tbh her personal hygiene is a problem, it is difficult to split this from the teenager and the ED sufferer but we blitz her room every week (usually when she is at school). DD will try and take her food to her bedroom but as difficult as it is we make her eat downstairs. She is in her bedroom constantly, doesn't communicate with anyone in the family and as hard as it is I have come to accept that our relationship will never be the same - as she is a teenager it was of course going to change but we were so close and now we are poles apart. @myrtleWilson it does seem that your daughter communicates and trusts you, has this always been the case during her ED?

D1 you are doing such an amazing job but just wanted to say your dd will absolutely come back to you. She's just a bit lost at the moment and angry at the world but when she comes out the other side you will be closer than ever. Not least because she knows that you did whatever it took to save her life.

I to thought my relationship with dd was beyond repair, she screamed awful hurtful abuse at me for months and would recoil if I went anywhere near her. With weight gain this has got better, I wouldn't say we're completely back to where we were but she is nice to me now, will allow physical contact and occasionally tells me she loves me. She said something the other day about a nurse she'd met at school being really kind 'like you mum' and I nearly fell down!!

We had a good day yesterday, went out to a city for the day. Dd managed lunch out (cheesy nachos and dips) she asked for pick and mix when we saw a show and had a Domino's pizza for dinner. It was an almost normal day out (I say almost as there was some guilt and anger from dd over the sweets on the way home.)

For those of you in the trenches, don't give up hope, keep going and feeding. The food and fats are what will bring your daughters back to you.

Thanks for the insight @Girliefriendlikespuppies - that gives me hope. Sounds like you had a normal day, I long for that. DD has been violent before, but today it escalated as she actually hurt DH - he is always calm but today he threw away a device of hers as punishment. I hope that we reconnect with DD one day, if not then at least if we can save her life.

Thank you for the support everyone. No fortisip or similar here, they’ve just said to remove the food after 30 minutes whether eaten or not.

yesterday was a better day, ate breakfast, morning snack and lunch fine. Went out with friends in the afternoon and had an ice cream for afternoon snack. Also had dinner out but came home and said she hadn’t had enough of a meal so needed more food and then had her pudding too. Didn’t have her evening snack though. Today has done ok except for not eating her lunchtime pudding.

I gutted her room over the weekend, it’s now clean and tidy with no hidden food. She’s not allowed food up there apart from sometimes her hot chocolate in the evening but somehow manages to sneak parts of her breakfast/lunch/snacks in and hide them…need to watch more closely I think

@Moomarre it sounds as if your DD had a good day yesterday, hope it continued today. My DD was diagnosed around the same time as yours, and I know that recovery is different for everyone - but how are your DD’s emotions? My once placid DD is verbally and physically abusive to both DH and me. She is angry all the time, won’t speak to us at all unless she wants something. She is weight restored and a lot of her activities have been returned to her, but is constantly angry and non communicative. Doors are smashed, furniture broken over a bowl of cereal - when your daughter does not complete a meal you mention after a certain time you take it away, do you substitute it in anyway? I’m probably looking for reassurance - this has been a bad week.

@D1ANA22 remind me when she was diagnosed and what wfh she got to?

D1 have her periods returned? I've noticed a pattern with my dd that everything goes to shit the week before her period. This month she was in a very dark place for the two days leading up to it and then the minute she started it was like a light went on.

Otherwise think of anger as a stage in recovery, my experience was dd went through similar stages to grief so denial, depression, anger, bargaining and finally acceptance (not of the illness but that she does have to eat and will eat the bulk of what I give her.) The stages do flit back and forth for a long time.

There is also extinction burst which happens when they are nearly weight restored and the ED voice gets much louder.

Once you push passed it and get the weight higher the voice does quieten down again. Dd describes it now as 'hiding behind a door' she knows it's (the voice) is there but it's not shouting at her all the time now.

Hi @NCTDN - she was diagnosed in November 2021, dropped to 68% wfh and hospitalised for two weeks. She has recently reached 100% wfh. @Girliefriendlikespuppies thank you again for your insight, yes she has had three periods over the last three months, the second was regular, the third after only three weeks. She hates her periods. We are pushing on with the weight, hopefully to 105% - 110% to build in tolerance for summer when all of us seem to eat less and move more. Tbh this is the hope we have, that food is her medicine and that includes animal fats to heal her brain - when this began we thought therapy and CBT would be the answer, but I am coming to the conclusion that it is food, weight gain and returning to some sort of teenage normal life (and of course our love) that will get her through this.

Good morning all. We are in the middle of a CAMHS assessment for my DD; I have a couple of questions about it if anyone can help?

They are uncertain whether it is an ED or not so these initial sessions don’t seem particularly helpful; also it feels like they are giving her a whole different vocabulary and a set of ideas and in some way making things worse. Is this possible or am I just over-reacting? Her wfh is very low (but she’s always been 0.4 centile or below, all through her childhood. I think she is testing the water to see what happens with CAMHS and I know she is reporting everything back to her friends p, so there is a performance element to it all. Is this likely? I feel like I can’t raise any doubts because I’ll just be seen as having my head in the sand.

She has actually made good progress and eats perfectly well at home and when she’s out with us, but they have been dismissive of this because it’s a bit slow; she’s at risk of getting overwhelmed if we were to go further on calories etc but they won’t give us a target to aim for or anything like that. It’s incredibly frustrating

Sorry for landing on your thread with a whinge 😳