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 @Girliefriendlikespuppies - like your DD mine is thankfully eating well but it feels mechanical, ie I still supervise mealtimes and her eating just doesn’t feel natural. A therapist once said if this continues for months then to contact them (not that they were much use in the first place). I am looking at slowly introducing some autonomy for her but this not eating freely now makes me think that we have forced the eating disorder to accept our uncompromising schedule but now DD is stuck in this rigid pattern - I’m keen to know yours and other parents experiences and thoughts around this.

PS @NanFlanders thats excellent news! It seems a million miles away from where you were only a few weeks away.

Hi everyone, I do still lurk and read but don't have masses to offer as DD1 had a slightly different profile to most of your DC. She's just started college in a class of 8 with 4 staff, so they go with her to the canteen and help her choose her food. She's had a couple of blow ups around food choices but generally ok.

D1 yep our dds sound very similar 😕 is your dd neurotypical? I strongly suspect my dd is autistic so some of the rigidity and holding into the routine of FBT plus the rules she has created for herself is more ASC than ED.

I've no clue how to help her move forward though.

Nan that's a fantastic update, I'm so pleased for you. I would really start pushing her on now, keep challenging her and just assume she'll eat foods that maybe have been tricky. I quite often put something in front of dd and avoid eye contact as I know she'll find it hard!! Weirdly if I just put it down, don't look at her and then busy myself with something she'll (9 times out of 10) eat it!! If I make any sort of comment about the food she won't.

@Girliefriendlikespuppies I’m not sure if DD is autistic, she shows signs in her life - socially awkward but she hit all her developmental milestones. I have investigated a private ASD test however the doctor I spoke to seemed to infer if DD hit her milestones then the test would come back as not autistic anyway. Not sure how accurate that is.

The ED introduced rituals and patterns that might be associated with ASD or might be solely ED related. I question myself - would an ASD diagnosis change anything, would it benefit DD and maybe explain her behaviour? I would like to know for her future as well - it could explain things to her as she develops.

D1ANA, we did an ADOS test on dd when she was 10 on the suggestion of a teacher. It came back as resolutely not autistic, but I'm still glad we did it. It turns out she's just awkward, but it was useful to know one way or the other.

Yes girliefriend, am still around and lurking but I've been holding back from posting as I didn't want to jinx the remarkable progress that DD has made. It's both gratifying and mystifying in equal measure. Like I say, I'm going to reflect on it when I feel it's safe to do so, but in the meantime, yes she eats pretty much freely. We prompt but she makes her own choices apart from when I've cooked in which case I'll serve her a portion. She certainly no longer chooses things just because it's the lowest calorie option. In fact, the real breakthrough came when we decided to hand over the reins to her for everything but breakfast and supper. A high risk but for us successful strategy.

D1 and valley I think the testing criteria for autism in girls is fundamentally flawed as it was designed to assess boys who present very differently.

I would have liked to have gotten a diagnosis for my dd as I feel like it would help her and other people understand why she struggles with some things so much.

Even pre ED she had lots of traits such as needing routine, being very black and white in her thinking, special interests, loads of sensory issues etc but in the assessment they decided because her eye contact was quite good and she has a good imagination she's not autistic

Even dd thinks she is!!

Infuriating.

Valley that's great your dd is doing well, she definitely must be in the small percentage of kids for whom FBT just doesn't work. What do the ED team make of it? Does she accept that she will need to continue gaining weight as she gets older?

We had a small breakthrough this morning as dd requested shreddies for breakfast!! She has been so set on having the same breakfast for the last two years that to see her loosen the reigns a bit is lovely. Plus I feel that maybe with some practice she might be able to get to a place where she can get her own breakfast...

D1ANA Your doctor was talking bullshit. Valley an ADOS is a small part of an autism diagnosis. It’s not designed for girls who have been shown to successfully mask autism for years. I’d pursue it again.

I don’t think the numbers for which FBT doesn’t work is necessarily small and periods are not always a good marker imvho. My daughter has been hospitalised several times. There seems to be no rhyme but reason with them with her. She’s even had them on the ward when her heart is distinctly compromised.

@R3vW1lk5 DD has other co-morbidities which makes me think she may be on the spectrum. What does a diagnosis help with - maybe an explanation to DD why she feels this way about herself and to give her an autistic identity? Does a diagnosis lead to treatment and if so what type of help - the doctors ‘dismissal’ means I haven’t explored this path but my continual doubt makes me think we should pursue this avenue.

Sorry to hear about your DDs hospitalisations. My understanding is that with increased health hormones return and hence the periods. Like your DD periods continued when DD was extremely malnourished and resumed quickly dur

meant to say returned quickly during refeeding at a relatively low weight and so we personally have not used these as a barometer for DDs health.

Yeah I agree with periods being a poor indicator of health, my dds periods came back early on in the refeeding even though she was still very ill mentally and physically. I think it's reassuring that they're going in the right direction but definitely not a sign they're at a healthy weight.

D1 that's all I wanted out of a diagnosis for dd, I thought it would help her understand herself and also be a way of validating her struggles. Unfortunately they set the bar for diagnosis very high which puts girls at disadvantage as they are generally very good at masking.

My understanding is that FBT is proven to have good results, it's something like 90% of children with anorexia will recover after two years of FBT. That said I wonder how they decide what 'recovered' looks like? They would probably say my dd is recovered as she is a healthy weight, going to college, eating a decent amount of calories etc however I would dispute she is fully recovered.

@Girliefriendlikespuppies Thanks for the pointers with regards to ASD tests - I wrestle with the thought of having one done and it being inconclusive and on the other hand if she is diagnosed what benefit would that bring. Many people I know in life are clearly on the spectrum, would having a formal diagnosis change anything for them?(admittedly they are not suffering from an ED that I am aware of).

With regards to recovery, what is the gauge for recovery - if it is not to have any anorexic thoughts or behaviours at all I doubt that anyone after two years of recovery has removed these all from their life - so FBT’s 90% recovery rate after 12 - 18 months looks to me to be weight restored and eating freely, my DD is there (kind of) but in no way would I say she is recovered.

I look at anorexia as a lifelong condition that requires constant management and where there are good days and bad days but recovery seems to be gauged as when you are not in NHS services anymore, but being discharged is not the whole story and really is the beginning of recovery not the end.

Hi everyone I never realised there was an thread for eating disorders but I have a daughter with anorexia and will read through the posts now but I just wanted to say hello and I’m sorry we are all in these awful situations

D1 I completely agree with you on recovery, I really hope that it's not lifelong though 😕 I think full recovery is possible- I have to hold onto that!!

Re the benefits of a diagnosis I suppose it's having that understanding of yourself. I know of some autistic adults that have struggled their whole life with feeling different, being the odd one out, being labelled as a bit eccentric or weird. Knowing they were actually autistic I think would have been really helpful for them.

I think for dd understanding that she probably is autistic even without a formal diagnosis is still useful for her.

Welcome lovewinter although sorry to hear your dd is ill. We're a friendly bunch here all at different stages of our child's ED journey.

Welcome, lovewinter - although obviously I'm sorry you need to be here. When you're ready you'll find lots of support.

I agree with @D1ANA22that maybe we (or some) need to think about it as a lifelong condition - we're in a wobbly position that has potential to end up as full blown relapse. DD's digestive system was massively damaged and last couple of weeks she's had really bad and painful bloating. Whilst we're trying to understand/isolate an intolerance, anorexia has been woken from her slumber and is trying to reassert its power - we've definitely seen a shift in behaviour (a return to not eating in front of others). Fingers crossed we can catch it in time....

My DD is classed as recovered. However whenever she is feeling stressed the desire to control food is strong. I think a default to food or lack thereof to manage feelings is v common and not restricted to those who have had AN. But it makes her v vulnerable to relapse... my default to stress is to est more.....
Sorry to hear about your DDs situation @myrtleWilson

Welcome @Iovewinter but sorry you are here

DD1 has been weight restored for a year but we still see the psychiatrist for her underlying depression/anxiety and when she's upset/angry/things don't go as she thinks they should, food is always the first thing to go. She fluctuates from being 'starving' to being 'not that hungry' (code for 'I don't want to eat') with not much in between.

Hi @Girliefriendlikespuppies sorry if I sounded despondent about recovery - I’m not, it’s just thinking of anorexia as a lifelong condition strangely helps me deal with the day to day. When DD was diagnosed I read and read - how long will she be affected and when will this nightmare end? I wanted for her to get ‘better’ and I put all life on hold willing her to get better. Now we are in a different place I am not giving up on her recovery - but have realised that life has to continue no matter how hard it is - acceptance I suppose. I still challenge the eating disorder everyday but realise that this may be the new normal for DD and for me for the medium term at least.

@myrtleWilson sorry to hear of your DD’s digestive problems, our young DD’s bodies take such a battering due to malnourishment, I do get upset that DD’s doctors allowed her to get so ill - simply because they had no beds on the refeeding ward, we had to fight to get DD onto a general ward at 68% wfh.

@Lougle your point about anxiety and eating resonates with me - I remember losing weight when taking exams. Sadly the anxiety and not eating for our DDs has more consequence.

@lovewinter sorry that you find yourself here but this is such a good group for information, support and solace - AN has made my life quite claustrophobic but the parents on here make me realise I am not alone fighting this dreadful illness.

Thanks you for welcoming I haven't had chance to read through everything but could I ask a question my middle daughter is adamant she is going vegan which my eldest is finding triggering to say the least I don't know what to do basically do I stop my middle child being vegan which if I am honest I am strongly against as I don't think its healthy for a growing teen and a massive extra faff for me to manage when cooking but at the same time she is her own person and I don't want to dictate her life and cause her to resent me or feel as if I am controlling her.

Hi @lovewinter. As others have said, sorry you find yourself here - but welcome! A really high proportion of anorexics use veganism as a way to restrict. Mine certainly did - and I very much regret facilitating it before I realised she had an ED. When she finally started back at school (after nearly a year off and 4 hospital admissions....), another girl was drinking and almond milk and she found it massively triggering. Anorexia is a life-threatening disease and I really don't think you can risk your AN daughter being triggered. Also there is a strong genetic component to AN - are you sure your middle daughter isn't trying to restrict? Tbh, I think your instincts are right - I think it's hard for a growing teen to get all the iron and calcium they need for puberty with a vegan diet.

Thank you, I agree and so does my husband we are going to speak to her tonight and discuss why we don’t think it’s a good idea but try and steer away from saying it will trigger her sister and make it more about the health benefits for her etc. I agree about the genetic component although I am almost certain she is not doing it to restrict just her personality type and she is doing it for an ethical view. I have 4 daughters and I am most worried about my youngest as she is most similar to my eldest but then very different at the same time! So hopefully it will be ok, but I am hyper aware of any signs

Love that would be a resolute no chance from me. My dd decided she wanted to become vegetarian when she was around 10yo and I was very against that. In the end we compromised and I said she could be pescatarian.

Teens need a lot of calories and fats in their diet and I honestly believe that can not be easily found in a vegan diet. It is often how anorexia starts and I'm not surprised your eldest is finding it triggering.

Thank you all I completely agree it’s not a good idea from any front yet the talk with my daughter went down like a led ballon ! She decided if we won’t facilitate her Veganism she will cook and buy food herself and in her anger I believe to provoke a reaction from me and her father she ran out and came in with my hidden double cream cartons and said “look she is putting this in all your food” my two other non an daughters couldn’t care less at this point and seemed to be enjoying the show ! But of course eldest was distraught and keeps saying we betrayed her trust and she now feels so alone I am fuming and so sad I don’t know what to do now. She is not eating anything I make now and has only had a bowl of soup, an apple and two rice cakes all day while my other daughter has filled the fridge with almond milk and vegan cheese.
I am sorry for being so selfish and making it all about me if I can offer any insight to help others I will ! Sadly now an expert on anorexia but then at the same time always find myself unsure of what to do next !

@lovewinter that must be so hard - I am so sorry. It was incredibly selfish and thoughtless of your DD to behave like that knowing how the situation would trigger the other one (and also a very extreme reaction which, I would say, is in itself a bit suspicious). Has she been vegetarian before or has this wanting to be vegan come out of the blue? I don't think teenagers should be following a vegan diet as, although not impossible, it is hard to get all the nutrients they need to grow properly etc. When things have cooled down, you could suggest that if she is that passionate about protecting the environment, you all do meat-free Monday. You could also explain that veganism is a lifestyle, not just about what you eat, so for the time being, she can look at other ways to be kinder to animals (e.g. not wearing leather shoes / having leather bags etc) as in your household at present, it is a matter of life or death to eat an inclusive diet. I hope things come round for your other DD soon.

@lovewinter So sorry. How appalling. Does your middle daughter actually understand how serious anorexia is? If she wants to be a vegan for ethical reasons, perhaps appeal to the ethical side of her - i.e. that she would be making life much harder for a very poorly girl with a very serious illness.