Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Girliefriendlikespuppies sorry you have been ill. Hope you improve soon.

I hope everyone is ok? For the last 3 days we've had a lot of resistance and food refusal, it's never been easy but he's never missed a meal just some snacks but yesterday he refused snack and dinner. We're at around 94/95% wfh. Does anyone know when or if it'll be easier for him to eat? Once we're over 100% or once his cognition is improving? We're not at the clinic until Tuesday and I'd love to put him outside with the wheelie bin tonight 😂 my poor 9 year old has been in tears over it at least at school she'd get a break from this.

Hey @Proseccoismyfriend - I think we had a similar experience at around 95% too, and I remember wondering if it could be an extinction burst or whether things were just going to be awful forever. I do think it was extinction burst, and although we haven't seen a huge amount of consistent improvement in mood or behaviour, there are definitely days that seem easier. We have seen some behaviours decline, for example my dd would get really frantic about going on all dog walks, even if it was horrible weather or she was clearly shattered after school, and she would be absolutely screaming and distraught if we said no. This behaviour has definitely dampened down over the last couple of weeks. She was about 101% last time I weighed her, and I suspect she has grown in height a little bit - meaning she will probably be less than 100. I think we need to add on at least another 5kg as a buffer, and keep on adding gradually as she grows.

My dd dried her hair with a hairdryer yesterday, and I know this sounds ridiculous but I felt so pleased - I think it's the first time since this whole thing started that she has taken time to look after herself.

It sounds like your ds is in a similar place that my dd was around that wfh. It seems slightly easier for her to eat at the moment, she has even had a couple of new things over the last few days which has been a surprise. So hopefully if you can keep going there will be some easier days round the corner. X

95% is prime extinction burst time.

I think it's a sort of mental wall they hit which you have to power through, once out the other side (97/98% plus wfh) things do tend to settle down a bit.

The key is to hold really firm on all the boundaries and keep pushing food in every which way you can. Do not let any snacks or food slide, the quicker you can get a few more kgs on them the better.

I’m feeling so flat tonight. I called the ED team for advice about whether we should continue with a reduced timetable at school or let her go back properly now she’s been discharged. Apparently the GP needs to liaise with the local hospital and consider admission for refeeding if she continues to lose, but still won’t call it an eating disorder. Dinner took nearly two hours tonight and we gave in. She ate most of her meat (under duress), no potato and a bit of cabbage.

I don’t know what else to do. Unless someone can coax some AN thought patterns out of her it seems like we just have to cope on our own, but she’s not allowed to just have a slight build. I want to cry but I’m too tired for anything to surface so just keep squashing it down. Mealtimes have gone south over Christmas and I think she’s been having one meal a day (which she picks at) - work has had us too busy to pay proper attention. Feels like someone needs to take extended leave to establish 3+3, my DH is working from home so I thought he could do it but he’s too busy. How long did it take to manage this for you?

Thank you, it really does feel like a wall he's so adamant he's not having it dinner ended up a screaming match and supper he refused so I sent him to bed while we all played a family game. No food, no fun. It gives me hope we are a little closer but my god this has such a hold on my child. @greydoor I'm so pleased you are finally seeing small improvements long may this last. Our ed team want to go way above 100% so he has a better recovery and buffer so definitely do it if you can.
@Glitterfarti I'm not surprised you're feeling flat. I'm really fortunate and can work from home but also whenever so I've been working nights and weekends when DH is here to catch up. I think it took me 2/3 weeks to establish 3+3 and him eating all of it. It's been since Boxing Day he's really pushing back and our usual words, reassurance, threats and pleads aren't working as well. I felt awful isolating him in his room tonight but he can't miss meals and still have life continue as if nothing is wrong. Dinner took an hour for us and I had nothing left when it came to supper so I'm not surprised you gave up after 2hrs. I'm so sorry the professionals around you aren't offering support or help at all, would it be worthwhile heading to a&e? Is dd wfh still low?

Thanks @Proseccoismyfriend, she was 83% at last weigh in a couple of weeks ago, her weight had gone up but because she’s grown the percentage has dropped. She doesn’t need a&e because everything else is stable, I’m off work tomorrow so will try to speak to GP and bring next weight check forward.

Definitely worth a try, apart from a virtual hug I have no other suggestions I'm afraid 😔

@Glitterfarti We needed a few weeks (3-4 weeks) back in June to establish 3+3. DD also needs meal support in school. 7 months on she still cannot eat unsupported. She does need meal support in school too but school are thankfully very supportive and have arranged a rota for snack and lunch supervision. Cannot quite believe you have been discharged at 83% WFH. DD wasn't allowed in school at that WFH at all though. She had to hit 85 to return.

Weird, DC also stuck at 95%. And camhs seem happy with it, so nothing I can do about it.

Just following on from my last comment the 2/3 weeks to establish the 3+3 doesn't mean he can eat easily or without support. Incase it wasn't clear! Every meal is still supervised and supported through (school do morning snack and he comes home at lunch). It took about that length of time to get it going and not having the food launched around the kitchen

Oh @Glitterfarti - I can't fathom why your dd has been discharged at such a low weight. Just to echo what others have said, it took us a good few weeks to establish 3+3, and during that time I was signed off or my dh was at home too. It was quite relentless and both of us had tried to work from home and manage it that way, but we couldn't juggle both.

We've only just started to trial full days back to school now my dd is 100%, and even then it's been a real struggle. I wouldn't consider it at 83.

What do the ed team think is going on? I know you've posted before, and please feel free not to reply, it's just baffling why they have ruled out ed...

@greydoor, the ED team don’t believe there are ED cognitions because she still eats sausages/nuggets/burgers etc and denies she is worried about her weight/shape. They think the restricted intake is due to anxiety/low mood so she’s seeing a counsellor (we have six sessions and are halfway through). To a degree they are relying on her using the right words to get a diagnosis but to do that she has to want to engage with them, but she doesn’t, so she says she’s fine in appointments and denies/locks down about her feelings/eating habits. We can take her to McDonald’s and she will eat a meal, but then probably won’t eat anything else that day, or will pick at her food just enough that you don’t realise she’s barely eating with the family til you go to scrape the plate and realise most of it’s still there.

Oh that's so infuriating. It sounds like they are working from the assumption that what starts problems with eating will 'cure' it, and missing out the understanding that it's a biological, brain based problem, which has a psychological component, and may be triggered by psychological issues. But once an eating disorder has started, it's there. Denying there is a problem is one of the diagnostic markers!!! www.dpt.nhs.uk/our-services/eating-disorders/what-is-an-eating-disorder/eating-disorder-symptoms/anorexia-symptoms

I know you know all of this, but it sounds like they don't have a grip on what an ed is... I like this diagram to explain that the ed can take control no matter what started it...

Hmm, that's a terrible photo, let me try again

Ps - my dd spreads her food around the plate too. We have been using a rubber spatula for weeks now at the end of every meal to gather up everything she hasn't eaten and get her to eat it... she really hates it / me but it does make the boundary clear.

Glitter I took two extended sick leaves from work to establish 3 plus 3. It took around 6 weeks of full time slog to get her anywhere near eating it. I think it's disgusting they've discharged your dd on such a low wfh, who is monitoring her bloods and obs? How many calories are you getting in day to day?

She sounds like she'd benefit from medication which without the ED service involvement will be really hard to get.

I found this article Ystd on the biology of anorexia which is interesting and explains how anorexia develops when a person is genetically predisposed to it and goes into a calorie deficit

''www.embs.org/pulse/articles/the-biology-behind-eating-disorders/'&%23039;''

Also makes a link with social isolation and lack of appetite which might explain why lockdown was such a trigger for so many kids.

Hi all, we had our first community ED clinic today which went well, they’re going to see us fortnightly for FBT. Bit of background our GP referred us to CAMHS after we saw her about 3 weeks ago, then on advice of people here I went back and ask for her to be assessed in hospital due to low HR, we had 3 days in (not on ED ward) for bloods/ more ECG etc before being released as happy heart was ok if no exercise and told to wait for ED team. We’ve been doing 3+3 supervised meals in that time. Clinic (2hours!) told us now we have established eating pattern we need to increase calories, we have a basic plan from them. DD asked how much weight they need her to put on, they said wfh for at least 110% to 115% because of how sporty she is and muscle weighing heavier. Also no sport at all until heart rate increases (hospital said that when we were released anyway). Just had first lunch on our plan (which seems a lot) but she ate it.
they’ve recommended I join a parents group which covered the physiology of eating disorders over 8 weeks to help support DD and also had 45 mins at the end for peer support, has anyone done this?

@NotAllGood sounds like you're getting good support, we've never had anything that specific in terms of advice. But our family therapist and psychologist have been great at supporting us to set boundaries I should add. We did the beat course developing dolphins and it was really helpful. We had a lovely group, I still think if them! I would have loved time at the end for peer support, I think that was missing from the BEAT course.

@Glitterfarti I'm just coming on to say I agree with everyone 83 WFH sounds like a very delicate state. I would also add that my DD doesn't eat a typical anorexia diet of lettuce and celery either. She also doesn't talk about weight concerns. I think we slid into this nightmare through OCD traits. But we're still being seen by the ED team.

I've also got a question re slowly letting your DC be more independent with eating. What did you start with? Just leaving the room briefly while they're eating?

I think (touch wood) that we may be turning a corner. She's eating her meals and snacks without shouting or crying, she's actually starting to say things like "I enjoyed that" or "that was nice". I'm secretly falling off my chair whilst trying to stay nonchalant 😬

@Girliefriendlikespuppies thanks for the article, that's really really interesting. It mentions another article when Dr Greenblatt talks about being a vegetarian in early adolescence and having a zinc and B12 deficiency can be a risk factor. Which is very relevant for us!

www.embs.org/pulse/articles/a-devastating-disorder-poorly-understood/

Morning and Happy New Year everyone. Hope it's a better one for most of us!

Can I ask about pacing? DD is spending hours and hours every day pacing her room. I telll her off, ask her to come out if the room but she ignores me. I am very busy with DD1 who has high care needs so the time I can dedicate to DD2 (the one with AN) is very limited. She makes use of it by pacing her room for hours. She got up today at 6 and has been walking to and down for 2h already. It is only 8 am :(

The ed clinic told me pacing is due to the brain being starved it makes them feel they need to be moving (an thoughts saying they need to exercise), backwards and forwards etc up and down the stairs. Ds for 6 weeks has been under strict instruction that he is literally sitting down and we get things for him or he's in bed rest. I appreciate you won't be able to do that with dd1, apart from this morning can you make her sit where you are? It drove me nuts at first permanently having him with me and saying sit down but it's getting easier now.

@Proseccoismyfriend when I can I sit down with her and watch a movie or so but I am really restricted. DD1 needs to go outdoors so I have to take her out quite a bit. DD2 refuses to leave the house with us. and there just isn't any one else to help.