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 hard to say with her emotions tbh. With her friends she seems fine and I get glimpses of that occasionally at home but most of the time she’s just shut away in her bedroom refusing to communicate with us. She has a better circle of friends now, last year she was in a group that all had depression/anxiety and I think they all fed off each other and got a bit competitive.

We have little ones at home too and the arguing and behaviour at mealtimes was affecting them too and affecting their eating so now we just don’t (advised by camhs). We give her the food, prompt/encourage her a few times during the meal then just take it away. Then that’s it until the next meal or snack. No supplements or substitutions. She’s only at 86% wfh and knows if she goes below 84% they want her admitted into hospital. She does just enough to maintain but not gain so it’s going to be a long road for us.

TBH I’m a little bit sceptical about the 100% thing because I have always been small/light despite eating lots (or I was until I had 4 babies and hit my 40s anyway!), and even when she was 74% she still had periods and all her bloods and ecg were fine. So I do feel that the right weight for her may be on the lower side- what’s more important to me than her weight is that she’s eating ‘normally’. I’m willing to trust the science though and aim for 100% in the hope that it does improve her mental state.

She has no fears about gaining weight or how many calories she’s consuming, but she has said sometimes she likes to test herself to see how long she can go without eating, sometimes she feels too anxious to eat and sometimes she feels like she doesn’t deserve to eat. I think there’s an element of testing me too to see how little I’ll let her get away with eating and therefore how much I care (CAMHS have said not to engage with this). Also she has so many foods she won’t/can’t eat that it can be hard to find a variety of meals she’ll eat so I end up doing the same few things which she then gets sick of and refuses to eat ever again!

@Moomarre my DD is the same, we have had the silent treatment for over a month now, always shut off in her room. I can hear her laugh with her friends, but there is no connection with her parents. Food is going reasonably OK but a lot of resistance to finishing meals which are a struggle for her. It is the rages that she goes into that I struggle with - supper last night I was told to ‘F off’ at least thirty times, I got her to eat some but it is so exhausting.

With regards to weight for height, as you say it isn’t a one size fits all, I do feel about going above her natural weight to build in some tolerance for back sliding and some parents have said this helps with the sufferers mental state, like your DD this will be a slow process for us.

Thank you for telling me of your experience, we are new to this and hearing from parents on MN helps me understand and is also good for my mental health.

Hope today is better than yesterday.

@D1ANA22 at least the approach we’re now taking has stopped the rages around food. Although at mealtimes now she’ll pick pick pick at someone to try to get an argument started about something else. Which then gives her a reason not to eat because she “can’t be around them” or “is too upset to eat”. When no one bites and engages someone will be chewing too loudly or the food tastes weird or a whole host of other reasons. Dp is rubbish at not engaging when she’s picking a fight because he sees it at letting her get away with it but can’t seem to realise that by engaging she’s getting exactly what she wanted 🤦🏻‍♀️

Mornings are going ok here and she’s eating breakfast, snack, lunch (minus that last bite/spoonful she always leaves 🙄) but afternoons/evenings not so good. She basically hasn’t eaten dinner or evening snack for 3 or 4 days now.

@TheHorrorOfIt sorry didn’t mean to skip past your post. Welcome to the thread, there is loads of helpful advice on here.

I think there is often a performance aspect but that it’s important to not mistake that as a sign that the illness isn’t real because it’s all a part of it. Does that make sense?

You say your dd eats well at home? What does that look like? I’m only asking because I’m pretty sure that in one of my first posts on here I said that my dd mostly ate well but it was only a way down the line that I realised that actually I’d just got very conditioned to her eating less and less and less and that me thinking she ate well was actually her eating toddler sized portions. Apologies if I’m projecting and please don’t think I’m trying to be goady. I really hope that it isn’t an ED for your dd. If she is genuinely eating well could you try adding in an extra snack to see if that helps her gain? Do you have the meal plan from camhs? Ours is 3 meals and 3 snacks and should be 2500-3000 calories a day. My dd won’t eat anywhere near the quantities on the plan or half the foods on there so I substitute for higher calorie foods (eg adding double cream to her hot chocolate, giving her pain au chocolat or scrambled eggs made with lots of butter and cream instead of a big bowl of cereal and two slices of toast). It’s a controversial approach but my dd’s weight was so low and she was eating basically nothing so I made the decision that making every mouthful count and getting weight on was more important than trying to get her to eat vast quantities of food.

Thank you @Moomarre yes that does make sense about the element of performance not being a separate thing, and I shall keep my thoughts to myself.

I expressly told the CAMHS nutritionist yesterday that we need firm guidance on what to aim for but they just skirted around it and suggested a milk drink in the morning alongside her breakfast (for the carb value). I feel like I am being set up to fail because I don’t know how far to go or how it’s working - other than her weigh-in yesterday was apparently not good (they won’t tell me and she won’t either) We had expected a gain and needed to show her what her efforts had resulted in, so it really was a crushing blow

When I say her eating is good - I mean eating mostly adult portions and more snacks than you would think possible, all high calorie. But it’s still a massive struggle to get more than 2400 cals into her, and that’s on a day when she’s at home; it’s like she’s constantly eating. She takes snacks and a drink to school, and says she is now having something at lunchtime too; obviously we assume she’s not telling the truth so can’t take those into account.

Before the appointment yesterday she had said she was feeling better in herself, no physical symptoms and has been visibly brighter and in a better mood. Then came CAMHS with an undermining approach and nothing really constructively added, and we are all in despair mode. We’re only eight weeks into it and I really don’t know how we can keep it up for the required time. Deep respect to those who have managed to keep it all together xx

So, DD is back in hospital. She ate enough to stay out during her GCSEs, but couldn't 'justify' eating to herself after. There goes the prom she's looked forward to since year 7. I hate anorexia.

Oh no @NanFlanders , so sorry to hear that

I’m so sorry to hear that your DD is back in hospital @NanFlanders - your fears about being motivated to get through her GCSE’s have sadly proved correct. What other motivators are there for your daughter - I know that summer is a struggle with no school to incentivise DD’s - maybe the prospect of college in autumn on condition that she eats and gains? I feel for you and the way senior school has ended for DD due to this dreadful illness😤

Oh no Nan I'm really sorry to hear that.

I bloody hate it to.

Oh Nan - so so sorry.. you will get through this

@NanFlanders so sorry to hear about your DD. It's heartbreaking how much this illness steals from sufferers.

We are just starting this journey with our dd 15 and just finished GCSES. She tried to commit suicide last summer and was hospitalised for acute paracetamol poisoning for 3 days. After a MH assessment she was referred to TIC and CAMHS.
She has always struggled socially and has no friends just one acquaintance. I have long queried high functioning autism as she is so inflexible in her approach to everything. She is also severely dyslexic and struggles academically. She has been having panic attacks at school for 2/3 years. With a huge amount of support from school - since the hospitalisation - she managed to sit all her exams (though will not pass most of them).
Finally, this week I referred her to our local eating disorder service as she looks so underweight but I didn’t want to disrupt her exams. I didn’t have any details as she refuses to talk about her eating (c. 300 calories a day was my best guess) or weight. When I told her she went ballistic and told me she wasn’t I’ll she was happy and she would kill herself if I made her eat more. She said that at 6st 10 and 5’ 6 with a BMI of 15.5 no-one would accept her for treatment as she weighed too much.
Now I know her actual weight, that she does eat 300 calories a day and makes herself sick - should I make a new referral with the details? The GP was totally uninterested and offered a phone call for a general catch up in a month. Haven’t heard anything from the ED service yet and I’m worried reading this that she needs treatment ASAP.
Sorry for the essay. Reading all your stories has both saddened me and given me hope.

Hi bring although sorry you've had to find us.

That sounds like a v v low weight and dangerously low food intake. I think you need to take her to a&e and get her properly assessed. She'll need bloods, an ecg and all physical observations checked. She also needs urgently referring to the ED team.

At that weight and calorie intake she will be high risk of refeeding syndrome so ideally the refeeding needs to start in hospital so they should admit her.

Your dd will go ballistic but that's the illness which is built aroubd denial. The starvation affects the brain to the point of psychosis so your dd won't be able to be rational or make any sensible decisions.

From what you've said it does sound like ASC may be at play as well. ED are v common in autistic girls however autism won't kill your dd but anorexia definitely will so sorting the anorexia has to be the priority.

Hi @bringmethehumous. That is a dangerously low BMI. I'd recontact CAMH$ (does she have a CAMHs key worker still?) first thing tomorrow with that information on her weight, intake and BMI - emphasise any physical symptoms she has (Cold hands and feet? Hair loss? Periods stopping?). Many GPs lack awareness of EDs - ours monitored my daughter fortnightly, but was shocked to the core when she was admitted to hospital. Things can decline very quickly - at the weight your DD is currently, my daughter's heart was struggling. I don't want to sound alarmist, but I'd consider A&E if you don't get an appointment in the next week, when you've updated the ED service/CAMHs.

@bringmethehumous sorry that you find yourself here, however you will receive support from those who have gone / are going through similar with their DC. You are the best advocate for your child, trust your instinct. My DD was in a similar position, even whilst under the eating disorder service they did not admit her as they had no beds - at that crisis point we went ourselves to A&E who put her immediately on a child’s ward for refeeding, my point is we had to push - she was so ill. Alarming as it is, hospital was a turning point in our DD’s recovery. Wishing you strength - it is hard, please remember you are not alone.

Thank you for your support and for sharing your hard won knowledge.
I spoke to her CAMHS worker yesterday and gave her all the details. She said she would keep an eye out for the referral, as the services are linked, and raise the subject of her eating at their next meeting in 10 days. She didn’t’ appear overly concerned although she acknowledged DD had a very low BMI.

DH thinks we should take her to A&E as does our eldest DD who works on a ward which currently has 2 anorexic inpatients - it’s a renal ward but had spare beds.

I am just so scared she will try to kill herself again. Her attempt last summer came after I had noticed she was restricting her eating and intervened. (I was tipping into an eating disorder as a teen but intervention from a teacher who noticed prevented it from developing). She had lost her only area of control - she then hoarded pills for months - which gave her a new area of control.
She says she wants to die. If she receives treatment unwillingly, how do I stop her from taking her life by more direct means?

I'm another one who would say take her to a&e.
When dd was admitted it was the worst day ever, but was the turning point and what we needed.

Bring She isn't in control though, anorexia is.

What causes anorexia is weight loss, weight loss tips the brain into starvation mode which results in biological processes that your dd can not control. The end result is severe anxiety, ocd type behaviours, irrational and overwhelming thoughts, suicidal ideation etc.

Food is what your dd needs and it's a lot of food for a long time. For context my dd (also suspected ASC) has been on around 3000 cals a day for nearly 2 years and although the brain is much better there are still some residual behaviours hanging about.

Definitely take her to a&e and explain your concerns re her previous suicide attempt. She needs all the physical observations done urgently and also needs to realise the low food intake isn't going to continue.

The EDSUK fb page has some useful resources on it including what checks a&e need to do and how to get started with FBT.

@bringmethehumous I echo what others say on this thread - we packed a bag and took our DD to A & E and at the time felt like complete failures as parents. With hindsight it was the only thing to do and it kick started our DDs recovery journey. The staff were excellent, DD’s ED hated it - but that is normal and she was safe on the ward, we slept in her room. We saw distress and it is hard but it was the right thing to do. Take care of yourself as well. How old is your DD, if in child services you have the power to do this.

Sorry to be back with more questions/requests for advice from those of you with more experience of this horrible journey than me... Does anyone have experience of changing CAMHS worker/know if this is even possible? I cannot get ours to move beyond a focus on wfh - my DD has grown about a cm since starting sessions with them, which I thought was a positive sign, in that her body is getting enough nutrition to grow, but the CAMHS worker put a real downer on it by going on about how it means her wfh has dropped below 85% again and she's not eating enough - which just makes my DD feel like a failure. She hates the sessions and they cause her even more anxiety - which means she doesn't eat.

I realise, as @Girliefriendlikespuppies has said, that weight loss causes anxiety, but my DD also says her anxiety means she cannot eat, as it feels like her throat is closing up and she feels sick (and will physically gag and vomit if she tries to eat anything) - and I don't know how to overcome this cycle. Her anxiety is getting out of hand - pretty much anything seems to trigger it now - but the CAMHS team will only focus on food and 'making' her eat, they won't address the anxiety at all. Is this because we are with the ED team - would there be another team that deals with anxiety issues?

@Worriedwithquestions ask as many questions as you like; I hope that one positive from my DD's illness is that we can help others with our experience. Our ED practitioner was part of a Multi Disciplinary Team including Psychiatrists, Nutritionists etc. (the MDT) and my daughters case reviewed at their regular meetings (I don't know how frequently the meetings were). Our Eating Disorder Service is within CAMH's. My DD never took to her ED nurse, but what anorexic would like the nurse telling her to eat - I am not sure that changing ED nurse would have helped our DD. Maybe raise the anxiety peaks with your ED nurse, they (the Psychiatrist on the MDT) may prescribe anxiety medication - however I have read on this thread that meds won't be prescribed at a lower weight, and perhaps not at 85% wfh which seems to be a benchmark for ED teams (return to school etc at this weight). It may be worth calling the crisis line at your ED service when the anxiety causes your daughter to gag / vomit - your DD's anxiety may receive attention for this then. We did call once and got a meeting with her psychiatrist. Knock on some doors, you are your daughters best advocate.

Thanks @D1ANA22 that is really helpful advice and I will raise the anxiety (again) with the CAMHS worker at our next appt - I have told her before but she brushed it aside to focus on eating/weight, but I will try again, and if she still doesn't listen, will call the crisis team. I guess because the ED is such a slow-moving evil, it never seems like a 'crisis' and I haven't called the crisis line before - but maybe it is what we need to trigger a meeting with the psychiatrist and get some more support/medication. I know I have mentioned it before, but my DD is naturally very slight so hopefully there will some flexibility re the 85% wfh and meds!

My DD was prescribed meds at much lower than 85%wfh! (Below 80% if I remember correctly)
Olanzapine helped us massively with the eating anxiety. It does not work for everyone but it is the 'go to' first medication for EDs in many Trusts. It is an antipyschotic but given in a low dose for EDs and works immediately. It can make the patient sleepy at the start but DD adjusted quickly. It also helped her with her insomnia and sleep is so helpful in recovery.
It took the edge off her ED voice which calmed her anxiety around eating.
The anxiety you describe is most likely ED based.
I would push for a psychiatric assessment and push for meds. I only advocate olanzpaine because it was a life saver for us. Other have used anti anxiety meds successfully but from what I have read they take longer to work and are harder to get the dose right.
My DDs anxiety has resolved to levels that are Manageable with non medicated intervention following recovery.
Today I looked at photos of a year ago when DD was 105% wfh and she looks 'heavy altho at the time I didn't notice. Now she is managing her own food she has 'slimmed down' and grown and is back to where I would 'expect' her to be build wise. However she NEEDED those months over her expected build to recover. She is prob under 100% wfh now. But I cannot stress enough that when approaching 100% from the other side (ie under weight) it was no where near enough for full recovery.. every percent saw her get a little bit better. At 95% I thought we would never get there. But around 105% we started to see improvements.

Hi @Worriedwithquestions - our CAMHS MDT was Consultant psychiatrist, support worker (ED), dietician and we had involvement from IHT which in our locality means Intensive Home Treatment - they were not from the ED team but came out about 3 x per week to work with DD and her anxiety - they worked on a "keep me safe" plan to reduce her self harming but also when lockdown allowed went out for a coffee etc to chat about stuff. It took a while to get used to them as our sense was they usually worked with younger teens (at this point DD was about to turn 18) but actually once they'd got over the initial relationship development the fact that there wasn't a huge age difference (IHT staff were probs early/mid 20s) - they found some common adult - adult ground. Do ask your CAMHS if they have similar and if they'd consider a referral (in addition to keeping ED support worker)

Thanks @Lottsbiffandsmudge I will push for an assessment and meds - sounds like olanzapine would help with her insomnia too! It all seems like such slow progress that 100% seems totally unobtainable right now, but we'll keep focusing on the positives, and hope that meds may help too. Really glad to hear that your DDs anxiety is now managable and that she is managing her own food.