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

Yeah the rule is unless they have been veggie or vegan for 3 years prior to the restriction starting then it's an absolute no no. Going veggie will be just another way for her to restrict so that will need knocking on the head right away.

Other common ones are going dairy free, cutting out sugar, low carbing, only eating between certain hours - they are all ED behaviours designed to encourage further food restriction.

Your dd jelly has basically trained her brain to believe that food is bad and could kill her (which we as rational humans know is complete nonsense and actually the opposite is true) so now when she does eat her brain chucks out all the negative emotions - fear, anger, guilt, anxiety - and the brain does this as it believes it's helping!! This is basically how all severe phobias start.

The only way to deal with it is to keep feeding, the food has to be exactly the foods they fear the most and it has to done over and over again.

Eventually they and their brains cotton on that food won't kill them and that actually not being starving hungry all the time feels much better.

Unfortunately this is not a quick process and can take a long time.

Ok so tomorrow I need to get her to eat some meat. I did think today this is part of the ED as it's only 4 weeks in she is veggie.

She broke down as we put dinner out tonight and my sister went and talked to her for the first time. She came back to the table and ate some food. More than I thought

Today she has eaten more than the previous 3 days. Tomorrow she will eat more. I will keep feeding her

Keep going @jelly79

All of us on here have been there. Nearly a year ago, this thread was a godsend when dd was admitted to hospital. Real life friends were great but didn't know enough about it - so much advice was from here (& loads more useful than what I got from hospital).
There will be elements that don't fit for your dd but you will soon learn what does and doesn't work.
Re uni support, I've been eating up on this as dd is going in sep. There certainly appears to be so much support out there and I can't for one minute see how it would affect their chances. Mental health is such a big issue right now that unis have to be seen to be doing all they can.

@NCTDN thank you. She is eating toast and a full avocado right now. Today she will eat more than yesterday and it will be balanced and healthy. That's my plan for today. We are away till Friday so my sister and I will continue to assess the situation and make decisions on next steps based on our observations.

Can't thank you all enough and I am sending you and your DCs lots of love and strength on this tough journey x

Hi everyone, I have made a thread in chat but to share - today is the day restaurants/cafes with over 250 staff have to put calories on their menus (as an aside many chains I've looked at include this info on their websites now too).

Restaurants are able to supply a non calorie labelled menu at guests request so if you're eating out with your DC do ask for non calorie menus. Equally I'm asking friends/family not affected by ED's to ask if non calorie menus are available at restaurants or when booking as I'm assuming more people ask, the more likely restaurants will have a decent supply available - plus you never know that someone in your party may be struggling with that ED voice and may gain confidence in hearing someone else ask for non calorie labelled menu. BEAT have some advice about dealing with thiswww.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/advice-for-eating-out-with-calorie-labelling/

PS - I know our DC all know the calories anyway but we know there is a difference between "knowing" and being told....

That's not good Myrtle - although a couple of years ago I'd have been greatly for this information for myself! Thanks x

Yeah I can foresee this being a major issue for dd Myrtle she is definitely in the ignorance is bliss camp so this is going to be a constant source of stress for her sadly.

I will definitely be asking for calorie free menus but dd does sometimes eat out with friends etc which will be more tricky to navigate.

She had a complete meltdown over the calorie information in macdonalds and she hasn't been back since 😫

I noticed with my DD eating out this week with a menu with calories on it caused her so much anxiety. Thought of this so much more when I heard this announcement

@myrtleWilson @jelly79
Hi @jelly79 sorry to hear about your troubles. It is very difficult. My daughter is 21 and in her second year at uni. Diagnosed with anorexia aged 12., still struggles. She stayed in the same town, as her ED team felt it was too risky for her to move away since there was no guarantee what the NHS services would be like elsewhere. She still needs weekly monitoring (weight and bloods) and sees consultant monthly. But she did move out to have the full student experience. So lives a short drive away. It's really difficult because I don't see her as often so harder for me to gauge whether she is eating or not. I take some comfort in the fact that she is being well monitored by the ED Team, to an extent. She still very underweight BMI around 14.5/15, and hits a crisis point every so often. Had lots of conversations with her before uni started and she agreed that her consultant can phone me once a month after their appt and give me an update (well only about things that my daughter agrees with). And once so far the consultant has phoned without my daughters knowledge when they were particularly concerned and thinking about hisp admission. It's not great having less input now, but on the other hand she is an adult, and has to learn to manage it I guess. Shes never been well enough to want to aim for recovery. Also she was able to access some sort of support through uni too. shes always a worry so underweight, still not hone through puberty, and now lots of other health issues caused by the longevity of the anorexia. But the fact that she is actually at uni is itself a massive achievement- since I was told for ages that she would be lucky to survive this long . Anyway hope things improve for you x

Wow @Bluebuddha10 that's a lot to take in. I'm glad she is managing uni and receives support. Which uni is it?

" Shes never been well enough to want to aim for recovery. "
That's so tough for you.

@NCTDN thank you x
I guess we've lived so long with it, I see it like a long term condition - not sure if that's a good or bad thing to be honest. Shes always been adamant she doesnt want to recover. She's had extended stays in hospital where shes been tube fed and become weight restored - but as soon as discharged she drastically loses it very quickly and we back to square one again. She had her diagnosis changed from anorexia to 'severe and enduring anorexia' which is very depressing. But there are positives, she is buying food and cooking which was totally impossible a couple years ago. She eats the same thing everyday though, always measured and weighed. Dont want to say which uni as it's a bit outing, but it's one of the Russell group universities. It's a horrible illness x

Hello all,
I really need some help and would be so grateful if people would reply with the benefit of their wisdom.
My daughter is 14, 5‘6 and currently weighs 6stone 4 and a bit. She has lost weight since Xmas (we were in hospital then as she was having some tests done related to blood sugar and I know she was around 7 stone then). I don’t know her starting weight as although we had scales in the house I didn’t encourage her to use them but I knew from her school uniform she had lost weight.

I took her to the GP 6 weeks ago as I was concerned about the weight loss which is very noticeable. She looks extremely frail and thin. She was already under a consultant at the hospital been resolved) and we were seen in her clinic a couple of weeks later. As soon as she clapped eyes on my daughter she said she thought she was anorexic and we were admitted for a feeding plan.

We spent 8 days in hospital and she following their plan- no fuss at all-ate everything. Initially, she lost weight on the plan but it was ramped up and she was discharged on day 8 after put on a couple of pounds. When in hospital she was seen by a CAMHS doctor who said he didn’t believe she had an eating disorder and that the paediatric team needed to look harder to find another cause for her weight loss.

There didn’t seem to be much effort involved in ascertaining any other causes for the weight loss- she had some blood tests and we know she does not seem to be diabetic or have thyroid issues for example. But that was the extent of it. Despite the CAMHS doctor, the paediatric team seemed to be proceeding on the basis of anorexia- they spoke of ‘refeeding’ etc and when I pushed would only say that maybe because she is sporty there had been an accidental calorie deficit causing the weight loss.

We left hospital and I felt pretty unsupported. I had to chase the next level diet plan by phone, there was no advice in terms of how much weight she needed to put on- just that there would be some follow up in 2-4 weeks. This for a child who had been on total bed rest and a heart rate monitor because her heart rate had been falling into the late 30s when she slept. Throughout my daughter has been adamant she has been eating and I had been watching her as closely as I could at home. She joins in family meals, sits with us after meals so I was as sure as I could be she wasn’t making herself sick.

We have been following the diet plan since we got home and we agreed i would weigh her once a week. After a week, she went back to school so the times at school I don’t know what she has been eating. But at home she has been having a good breakfast, family dinner with a range of foods, afternoon snack and supper before bed. I weighed her weekly as agreed and she seemed to be putting on a couple of pounds a week.

However, I weighed her this morning and she is almost back to the weight she was admitted at- 6st 4. I am devastated. We have both cried. We have now received appointments and are due to see the dietician and paediatrician in 2 and a half weeks.

Like I said- the CAMHS doctor was unequivocal that she does not have an eating disorder. However, having observed her closely I do think there are some potentially worrying signs- she has definitely been eating but she doesn’t eat junk food- so no crisps, not much chocolate, she prefers whole meal bread to whitebread, new potatoes to mash (although same will have butter on them). However, she is having full fat yoghurts, milk etc. She promises me she is not making herself sick- but I know this illness is characterised by denial and lies. We only have one bathroom and i think we would hear her but maybe I’m wrong?

I had promised her we would go away as a treat next week and when I wanted to weigh her this morning she was unusually resistant. However, I persisted and then found out she had put a weight in her PJs. She tells me this is the first time she has done it because she was worried I would not take her away and she could tell she was losing weight again. I’m devastated. I just don’t know what to believe. Has she been lying all along? Has she managed to convince the CAMHS doctor? But she does seem to be eating! I’m terrified and at a loss what to do.

This morning she ate a bowl of porridge, a slice of toast, a crumpet with butter and a glass of milk with no fuss though. Last night she cooked paella for us all then sat and ate it with us. Any thoughts, ideas, strategies would be hugely appreciated.

Sorry for the long post. In the bit about the consultant- she was already under a consultant for ongoing health issues- unresolved. ?blood sugar problems, general lethargy and malaise.

Hi Fay I think regardless of the cause your dd is very underweight and it does sound like there is some anorexic behaviours there as well. I think you need to go back to Camhs and say they haven't found any other cause so you're working on the assumption it is anorexia and you need support.

She sounds too unwell to be at school tbh, I would have her on bed/sofa rest and 3 meals plus 3 snacks a day and really ramp the calories up. To rule out purging ask for the loo doors to stay open and no going to the toilet for 1-2 hours post food.

Have you worked out her weight for height? That will give you some idea of where she is and what you're aiming for.

@Fayrazzled that sounds very tough.
I agree with @Girliefriendlikespuppies that your DD sounds very under weight regardless of why. At 5ft 6 and 6st 4lbs I would say very underweight.
The problem is that being so under weight even if not deliberately can lead to anorexia behaviours. My DD never set out to lose weight but to become healthier and to keep her fitness during lock down and because she is sporty and was doing a lot of exercise she went into a calorie deficit despite eating all her meals. It's frighteningly easy to do with girls this age who are still growing and developing. She just dropped all treats, desserts and most snacks and the weight fell off in about 4 weeks. Over a stone and a half.
The red flags for me here are the healthy eating which all seems very reasonable but prob isnt and the weights in her PJs. She has learnt that behaviour somewhere so I would be monitoring social media and Internet usage.
Once the weight is off (whatever the reason) the brain cannot cope and AN behaviours can sneak in. She needs to stop all sport/ exercise (my DD exercised secretly) and i would suggest you challenge her food wise. Ask her to eat something recently disappeared from her diet (chocolate? Mash?) And see the reaction. If its extreme then its prob AN. I finally realised something was up with my DD when she went ballistic over butter on her toast. Her keyworker called this poking the bear!
AN is v sneaky. And totally untrustworthy. Please go back to CAMHS. and trust your gut.

@Fayrazzled it is positive that your DD ate a hearty breakfast, if you can continue to supervise her and make sure she eats plenty for breakfast, lunch and dinner as well as three snacks and drinks in between then you are putting in place family based treatment which is what I expect the Eating Disorder team will do when you see them. On that point It does appear that your DD has an eating disorder and now is a good time to start FBT without waiting for the referral, expect to meet some resistance and remember if nothing is eaten take DD to A&E - when we did FBT at home the anorexia hated being ‘revealed’ and next to nothing was eaten. Is your DD afraid of another hospital admission? That can be a motivator to eat, although whilst hospitalisation was worrying it gave DD (and us as a family) the jump start to recovery. I wish I had known about this thread then, people’s experiences are invaluable and to know that you are not alone. Take care of yourself to look after your DD, people say that things will get better and there is no reason why they won’t for your DD.

Our DD was diagnosed in October 2021. I am self employed and stopped work then and have stayed home since, DH works from home. I am planning to return to work next week and must admit I am dreading it - FBT and buying, preparing and cooking meals has been my role/life (I have taken this on as DH has a limited range of meals he can cook and my meals include ‘challenges’). I am hoping to work around the buying and cooking into my schedule due to the flexibility of my self employment, I do get anxious shopping and cooking (I remember the early days when there would be a refusal to eat anything and that stress and trauma still lives with me every mealtime). I also worry about leaving DH, we have been living and breathing DD’s anorexia for so many months, it is all DH and I seem to talk about and whilst we are in a better place than October last year, we know this is a long journey and it dominates our every conversation. Maybe I’m worried about separation anxiety, who knows? Meltdowns are less frequent than the early months of FBT - is that your experience as well? However when there is a meltdown DH and I work as a team and support one another against the AN - and support each other to tolerate DD’s distress and upset. I worry about either DH or I being alone when DD has a meltdown, it is very upsetting to deal with and being there for each other helps us cope. I can arrange work so that I am home when DD returns from school each day and we all attend CAMH meetings which is when DD gets most distressed. From your experiences what helps (and what doesn’t) when you start to adapt your own life/work away from being a 24/7 carer. I am constantly fretting about doing the wrong thing that may hinder DD’s recovery.

Am furious today. DD attended adults MH team - its been over six months since the referral (original contact was off sick and has now started maternity leave so DD has a new therapist) During that time, she's done as well as anyone could I think in navigating recovery pretty much by herself.

However, she recognises she needs therapeutic input to understand & tackle root causes. Hence desire for connection with MH team rather than Adults ED.

Appointment today is first time she's met new person so no relationship built up. Within 10 minutes of appointment starting, MH worker read from notes and told DD her weight (from last check up in September). DD breaks down.

DD and us have repeatedly told/requested of each and every HCP we have an interaction with that DD does NOT want to know her weight, her preference is not to be weighed at all.

MH worker says there is nothing in notes about not wanting to know weight (suspect this is bollocks and she's not read properly) nevertheless even if its not in the notes, why would you feel need to tell an anorexic in recovery their weight - there was no therapeutic need to whatsoever.

So, DD now has absolutely no trust in service and who knows how this hand grenade will play out but I guess upside for the Trust is that by re-traumatising a young adult they've reduced demand on their service by 1....

@Mytlewilson - I’m new to this thread and only now learning about this dreadful illness - (DD 15 diagnosed in Oct’ 21) but even I as a layperson would know not to disclose weight to an anorexic, hence blind weighing, it is staggering that this has happened.

Whilst my DD is in ED clinic with weekly meetings her wfh is too low for individual therapy. My concern is that I initially read about weight restoration and then therapy as the protocol, however the more I witness DD in the meetings (close down, agitation) the more I am convinced that there will be no benefit to therapy for her, your experience further cements my concerns that therapy depends on trust and personalities and DD engaging and I don’t ever see that combination happening. What are others experiences with therapy, particularly CBT?

Hi @D1ANA22 - apologies I was in such a funk yesterday I didn't reply to your post!

I know you're not yet in a 'recovery space' but I'm sharing this as our experience was it hard for parents/carers to move into a recovery headspace rather than crisis headspace .The advice from our Camhs team was to try to create space in the day, space which the ED doesn't control - so time with friends etc. However, for us as parents our experience of the horror of anorexia meant we were conditioned by trauma and all of our decisions/interactions with through a trauma led lens. For example, my DD decided she wanted to make her body strong through a PT and gym based work - my default trauma response was that this was the anorexia trying to wrestle back control into a state of compulsive exercising. It wasn't and DD (rightly) got annoyed that we were at risk of keeping her in the anorexia box right at the time she was trying to get out of it. It is a leap of faith as parents.

What we did in terms of creating space was DD would write out a plan of activity for the next day - in the beginning this was in 30 min slots so
8am breakfast, 8.30am empty dishwasher, 9.00am hoover bedroom - so she had an immediate distraction after every meal. Over time the time slots could be less strict but important to have a distraction activity available to reduce meltdowns. Then further on the distraction activity may not involve parents at all (see above about parental management of this!)

In terms of therapy - to be honest, nothing changed for us in CAMHS - DD has decided to recover and is managing the food side now but does recognise that long term recovery will require therapy which was supposed to start yesterday but hey ho

Keep using the thread - its a lifeline!

We had mixed experiences of therapy tbh, dd had some cbt and I think it did help a bit but because she's quite black and white in her thinking (I suspect ASC) she really doesn't like to challenge her thoughts or admit they could be wrong!!

Dds struggling a bit with being off school for Easter, she is definitely restricting more and refused her snack Ystd. She also started sucking ice cubes which she hasn't done for ages (I think it distracts her from feeling hungry 😞)

We're away tonight, going to a big concert, as always I hope this shows her what life should be like without EDs spoiling everything!!

Hope valley is okay, think she's been quiet for a while.

Hi myrtleWilson - that’s exactly where I am, constantly on anorexia high alert to the detriment of DH, DS, family and work (and my own MH). DH is calmer and does balance DD’s social needs against my ‘has she eaten with her friends, has she thrown away the snack?’, DH says the scales don’t lie whereas I attempt to micromanage feeding.

DD doing positive things is a must for her MH - like you I fret when she does anything, undoing the hard work of refeeding and whether it is DD or anorexic thinking around the activities.

Girliefriendlikespuppies your experience is what I expect from my DD, we suspect she is on the spectrum, black and white thinking and stubborn. Are there any online courses or programs aimed at eating disorder illnesses, I imagine DD would respond to this. I did purchase a book with questionnaires in it (leading questions tbh) however I have not approached her with this yet.

lorrainecandy.substack.com/p/calories-on-menus-a-parents-guide

Could be of use to some people x

@myrtleWilson I hope you don't mind me jumping in with my perspective on adult services. Obviously this is just my experience, but I have found professionals within the CMHT have limited knowledge of EDs. When I was admitted to an acute pysch ward, so not ED specialists (and I was admitted not solely due to the ED) I was told that there wasn't really help available for my ED on the ward as staff didn't have the knowledge. I didn't eat a single full meal during my admission and lost weight. One of the reasons I was discharged was because I was able to eat better at home.

I have no idea of the system in your area, but I am under the CMHT and ED team at the moment and receive all my therapeutic input from the ED team. They are far better equipped to provide the right treatment than the CMHT, and it isn't the FBT model at all. It's helping me tackle the ED behaviour as well as understanding it. I wonder if your DD would actually find the ED service more beneficial? Was it a psychologist she met with or a CPN / social worker?

Also, in my experience, so might not be the same for everyone, I am asked to weigh weekly and it's never blind. The premise is that weight avoidance can be as damaging as obsessive weighing: if you avoid knowing your weight, you might believe that what you are eating is causing weight gain, when that might not be true. Part of the process is looking at what you are eating, and being able to rationally see what effect that has on your body. Absolutely not saying that disclosing her weight was right in that situation, it clearly wasn't well thought out, just that if she does get therapy, she may well be encouraged to weigh weekly simply to slowly remove the importance it holds. If she is distressed knowing her weight, then I imagine that the ED voice is still there, albeit far quieter.

The system can be really hard to navigate an adult and if she doesn't engage she is likely to be discharged. I would encourage her to try calling the duty worker if she was unhappy with the person she met yesterday , they might be able to help.