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

Thanks @myrtleWilson I'm ok. I've encouraged DD1 to walk a little today and yesterday. Small steps. She still refused the cookie I bought today, but had a reasonably good lunch.

@Iambitingmytongue I hope you get seen soon.

Iam good luck in a&e, well done for being proactive.

We've had a good day, went to a water park (have spent a fortune) but dd had a fab time and ate well (crisps and biscuits for a snack, fishfingers and fries for lunch) I also faced one of my big fears of heights and did the biggest water slide ride there!!

Just dinner and pudding to go now.

Lougle I'm sorry your dd is struggling again, are they still keeping an eye on her bloods?

Go you, @Girliefriendlikespuppies !

We have a blood test tomorrow.

All our children are at different stages and no recovery is the same, but how do you all cope?

AN is the first thing on my mind when I wake up and the last thing I am thinking of when I go to bed - it dominates my life. DH can put his thoughts and emotions in to boxes, I am constantly planning and anxiously worrying about meals and snacks. This is typical of me, when I have a problem it is all consuming - I don’t know how to get past this.

@myrtleWilson has referred before, it is living in crisis mode on constant red alert and it is exhausting. I am also guilty of reading too much on the internet which further fills my mind.

DD is weight restored (just), her mood is low and can be violent sometimes and non communicative.

How do you all cope?

It is tough @D1ANA22 - the intensity of it is difficult to describe to anyone who hasn't experienced it - we're now at a distance enough to look back at the days when we mapped out what we were doing in 30 minute blocks from 7am to 10pm (thankfully)and I think how the hell were we living like that -but it is what gets you through.

When my DD had her first attempt at recovery and then relapsed I found that hard because I'd lost my 'battle rhythm' if you like.

You're right everyone is different and we probably have to take our cues from our DC. I've said before that DD was of the view that the way not to have an ED was to act like she didn't have an ED and that was harder for us as parents than for her but eventually she told us in no uncertain terms we realised that keeping her in the ED box even though it was out of an abundance of love and desire to protect her, wasn't letting her move forward into recovery.

Also, as recovery becomes more sustainable you (or at least I) get re-energised by every laugh you hear, every 'normal' conversation you have, when you see them doing things they previously couldn't. Don't get me wrong the hyper alertness is still there but it is in a queue of other more positive emotions/reactions.

Are there specific scenarios that you're finding hard at the moment or is it just all a bit much right now?

Like Myrtle dds, dd was never in the ED situation where she openly acknowledged it.
She's miles from where she was a year ago. Had a great week abroad with friends and now preparing for uni.

I don't know what's going on. DD1 barely ate last night. When we did try and make her eat her chicken wing, she spat half of it out, saying she was going to be sick. She made it up the stairs into the bathroom then vomited all over the floor. Today she says she's still ill. She didn't have breakfast, ate a pork bao bun for lunch, then she's gone to bed, not wanting dinner.

Oh Lougle that sounds so tough. I presume with the lack of food and the feeling ill/vomiting, you've not been able to do much on increasing physical activity yet? have you had anything back from her bloods?

Oh no lougle that sounds v familiar from when your dd was ill (anorexia wise) before 😕 is she off the olanzipine now?

D1 I think I live in denial a lot of the time, because dd looks okay and does eat just about enough I tend to stick my head in the sand and pray that the other AN behaviours will just gradually piss off.

Every now and again I will have a complete breakdown though, I had one before the holiday and cried so much I caused a sty in my eye!!

This holiday though has highlighted how much less she eats now though compared to pre ED, she used to have such a good appetite and could happily eat all day aged 10/11yo. She eats a lot less than she did at that age now which is sad given she's the size of an adult now.

She also said something about her being fat and ugly Ystd which broke my heart given she looks like a goddess sat by the pool!! Why can't they see themselves for how they actually look?!

Thanks for the solidarity. I've been able to get her to take short walks and we've been less accepting of day time naps, which is an improvement, but no huge leaps. Blood taken on Friday.

@lougle that all sounds really hard - so sorry to hear your DD’s struggles.

Thank you @myrtleWilson @NCTDN and @Girliefriendlikespuppies for your wise and comforting words. Yes we have had a blip, DD’s anxiety is high and angrily she smashed up the house yesterday evening and her self harm is apparent in summer clothes. I live on edge whether it be food refusal / restriction, self harm, emotional outbursts or all three can happen on the same day. Then we can have a good day and all I think about is the next bad moments to happen.

My DH is much more practical and carries on, when it comes to fight, flight or freeze then I definitely freeze before and after these situations. Just ranting a bit here and feeling sorry for my DD and her state of mind.

@NanFlanders is your DD home full time now?

We're home from Portugal, it was a lovely holiday despite a few food related stresses. Dd has managed to get an ear infection from the hours spent in the pool and sea so I'm taking her to the dr later.

I know it seems a bit silly but I get really anxious taking her to anything medical, I worry they will randomly weigh her which could be catastrophic for her. I can't imagine they will weigh her for an ear infection though!!

Overall dd did okay, she allowed herself a few treats. We had a couple of arguments over food but I let quite a lot go for the sake of the holiday.

Straight back on it now though!!

How's everyone else doing?

@Girliefriendlikespuppies Snap - we’ve let a few things slip for the sake of our holiday - in my mind I balance this with eating at restaurants as ‘exposure work’, we rarely eat out at home. DD’s mood seems to go in three day cycles and is definitely a case of good mood = food.

DD is doing more activity wise on holiday as well which is a plus and also a minus, however the activities are not lead by the AN but are for fun (at the beginning of recovery DD wanted to walk everywhere - now pleads with us to use the car).

Hope everyone is coping OK.

Any advice from people with WR children?
DD is now as near to 100% wfh that she's ever been in her life. Her exercise obsession has stopped but she's almost gone the other way. Whilst portions are smaller than pre ED, she eats a much greater variety of food than 6 months ago. At the height of the ED everything was fruit and vegetables. Now she hardly eats any of them. How do I approach this without triggering all the old behaviours?
She's always been very slender anyway and small for her size, but she's recently got quite a tummy on her too. Again I'm so wary of saying anything.

@NCTDN I'd just let it go. I think there is some thought that they need a period of going over before they adjust to their true weight.

@Girliefriendlikespuppies I don't want to worry you, but I was because they needed my weight to calculate antibiotics. Just might be worth having a quiet word with the GP ahead of time.

@NCTDN I read that the weight goes to the abdominal area before it starts to redistribute to other areas of the body - I recall that is due to the body holding on to these reserves in case of starvation again. Once the body learns that is not going to happen then weight is distributed to the other areas as before the ED.

@NCTDN - I agree with @Lougle I'd let it go. Also, (and I don't know the timelines on this) but in early recovery weight gain can cluster - the body (as far as I've been told) is trying to protect organs by distributing weight gain accordingly. This blog on Tabitha's website explains a bit more but also suggests that redistribution is usually 'sorted' by the 1 year mark. Although its not, it does feel a bit like a macabre 'fuck you' from the ED and I presume could be a trigger for some - another reason I'd leave it alone.

@Girliefriendlikespuppies - we have it in my DD's GP notes not to be weighed, not to mention weight, not to have weight on screen etc. The GP was great about it, although the GP did ring us to say that whilst they'd flag it up on any notes going into a different medical setting they (GP) couldn't guarantee what would happen there which is how Adults Mental health came to tell DD her weight within 3 minutes of her first appointment but hey ho How exact does the weight for any antibiotics need to be - is it down to a kilo or is it in say 10kg parameters? At least if it's flagged on her records not to be weighed it will hopefully be handled sensitively. I remember reading a comment from someone in ED recovery who went to a new GP who wanted weigh her for usual new GP check or similar and the person said, no and explained why and the GP just said "Thats absolutely fine, lets agree a metric that you best feels reflects your health". I remember actually crying when I read it as I think it was when DD was very ill and the thought of such kindness and understanding was overwhelming.

Glad holidays went well for you and @D1ANA22

@Iambitingmytongue how are you doing?

Sorry - forgot blog on TF's site tabithafarrar.com/2012/04/coped-fat-tummy-recovery/

@myrtleWilson that's a great blog thank you. So much of it rings true - DDs periods are yet to return like Tabitha farrar mentioned.
Very reassuring but I won't mention any to dd unless she brings it up in which case I'll get her to read that blog.

@NCTDN I echo what others have said. Just leave it. My DD is a year WR and back to what I would consider her 'normal' body shape. I look at photos from a year ago and she was carrying more weight esp around her face and tummy. Her food levels have reduced slightly since then but not consciously and I let her more or less work from her hunger levels. She looks very good now. If I'd mentioned anything a year ago I think it would have set her right back.

Thanks for the thoughts re the Dr, I'll email them to check there's a warning re not to weigh her or if they absolutely have to weigh her - not to tell her!!

We actually saw a nurse practitioner who decided the ear was a bit inflamed but wasn't overly worried so prescribed an ointment and antibiotics just incase it doesn't improve. Dd had a terrible night crying in pain so I will start her on the antibiotics I think.

NC definitely don't say anything and you also need to challenge all your preconceived thoughts about what a 'healthy diet' looks like. It's really hard to get into the mindset of high calorie and high fat foods as being healthy and minimal exercise also being healthy!!

I think as a society we are definitely programmed to feel guilty for eating high calorie foods and also told repeatedly that exercise is a cure all.

I hate seeing my dd doing the ED led exercise now, it's actually one of the things that upsets me most about the illness. On the day her ear started to hurt on holiday she got v twitchy as she couldn't swim so she started trying to reduce how much she needed to eat. Then after dinner she said I am going swimming, I'll just keep my head out the water and proceeded to swim 50 laps before I could get her out the pool!!

I have noticed a decline in her mental state over the holiday and an increase in AN behaviours which I think is because she's probably lost a bit of weight as the meals she had were not as high calorie as usual.

I would still think she's over 100% wfh though, some kids need to go quite a bit over to get their brains on track.

@Girliefriendlikespuppies I also find the compensatory behaviours upsetting, knowing the hold that this illness has on our children and the constant battle between food and activity. My DD has lost weight this holiday I am sure, hot weather and drinking water does not help with food consumption. My DD is 15 but some of her behaviour is quite childish and that upsets me aswell (having her head on the table at a restaurant, messing with the condiments) - as if the starvation to her brain has affected her maturity and development - is this usual?

@D1ANA22 - thanks for asking. She has been out a couple, and despite my initial fears had done better than she's done since diagnosis - eating a wider (though still limited) range of foods and gaining 700g. My son and I have been in Turkey for a few days and had a great time, and she stayed home with my DH, and they both coped really well. Then yesterday happened! After a great meeting with he ED team, some boys on bikes passed her and dh when they were on a walk and called her a 'fat n- word".
This has had a massive effect on her confidence. She shut herself in her room and she says she can't eat or go out any more. She has refused 2 meals and 2 snacks so far. DS can't persuade her to go for a walk with him and she wants to cancel a meeting with her friends on Monday.
She has been doing so well on the new plan: despite our initial concerns it has been really effective. Just gutted for her.