Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

@Nomoreplease23 thanks for sharing your story and support, I totally understand about stepping away, wishing you and your DD health and happiness, hope that you can restore your peace really soon 💐

@Cantfindthewordsddstruggling I hear you! It's so overwhelming sometimes. I'd just focus on calories in, rather than needing a wide range of snacks, until her weight looks better. So agreeing to a couple of snack possibilities sounds good to me.

My dd's variety is not great but recently she's reached over 100 WFH, and I'm just starting to think about trying fear foods. I gave her the choice of pasta or eggs. She's agreed to pasta going on the menu this week.

@Nomoreplease23

All the best for you and DD. And thank you for all your wise words and advice over the last year!

Hi .
I just wanted to make people aware that
restricted eating or very particular eating can be a sign of autism ( especially in females)
there is some fantastic information and resources on the ‘PEACE’ South London and Maudsley
info for young people… parent/ caters and hospital /
staff

@Curlyhairedassasin So pleased - that is a MAJOR breakthrough.

@Nomoreplease23 - Understandable. Thanks for all your contributions. Wishing you and DD all the very best.

Great to hear about the home cooked meal @Curlyhairedassasin. This is an ongoing challenge for us too.
@Nomoreplease23 Wishing you and your DD the best of luck going forward

@Curlyhairedassasin that is brilliant news! A big step forwards, well done and hope it continues!

@Nomoreplease23 wishing you all the best, thank you for all your support on these threads.

@greydoor thank you..103% is great, and we do feel relief to have a bit of a safety net for things such as the residential. She is growing though (4cm in 2 months so far) so we've been having to keep on it as her WFH keeps dipping even with weight gain. She's nowhere near "normal" around food though. I just keep hoping for this magical moment, now that she's better nourished, where it all clicks into place (if only!). She has so many fear foods and is so rigid around times and choices, it just feels like we're miles away still. But trying to remember how far we've come since my first, desperate posts on this thread back in June 2023.

GrannyRoberts

My dd has been WR and eating 'well enough' for around 8 months now but she still has many food rules and needs supervision and prompting.

She will compensate for anything out of the ordinary, such as having a piece of chocolate orange on xmas day meant she left half her breakfast the next day, so I'm quite scared of trying to implement new foods for fear of any less cals going in.

We too are a million miles away from the awful early days but I too am waiting for a 'magic' moment when she can begin to eat freely again.

Nomoreplease23

It's so important to keep looking forward. Thanks for being here and I wish you all the best ❤️

summertimesadness24

So glad dd's tests were good. Sounds like the hosp were on the ball. Really hoping things start to improve now but at least you know that if you're worried you can go back to the hospital for tests and reassurance. If nothing else it shows the ED who's boss.

Curlyhairedassasin

That's great news. Dd getting off the ready meals and eating home cook meals was a turning point for us.

Geckosarecool

There have been a few posters with ASD ED sufferers here so there's definitely a link. My dd's autistic traits came on when her weight dropped. Her Psychiatrist said they would likely be temporary just while she was at low weight. She's been normal weight for a few months now but we are still seeing signs. She has noticed signs in herself and done some online tests. Her friend has an autistic sister and tells dd she sees similarities. We're not sure whether to pursue diagnosis or not. Dd is turning 18 and not under camhs anymore so I guess we'd be looking at a private diagnosis. What exactly would a diagnosis do to help her, can anyone with experience help? I guess when she ventures into working or back into education there may be support if she has an actual diagnosis?

@BagpussSaggyOldClothCat totally. I just feel like we're a bit stuck. Our ED team are convinced that change will come with time, and that in our case, with DD's profile, this will be something she will instigate when she's ready. The message we're getting is stand firm and be patient. I hate the constant negotiation and compensation though. Today we didn't have her usual brand of yoghurt raisins at snack and she didn't like the ones we had, so we agreed a swap (sliced apple and crisps). Now we've been rotating between 3 different snack options for every snack for months, and this was new - so i was secretly pleased, she hasn't eaten apple or crisps in 6 months...but the negotiation was painful, down to the last crisp. Because she'd eaten a few yoghurt raisins she had to have fewer crisps etc. Overall I guess good that she didn't revert to one of the 2 other "safe" snacks but these kind of compensatory behaviours really bring home how far from normal we still are.

Anyway I am currently taking my frustration out on a cheese toastie which I'm slathering with an extra thick layer of butter

Granny enjoy your toastie 😋 my dd is the same, it drives me demented! I would say she's better than she was but she'd never in a million years agree to an ad hoc snack it would have to be a part of her overall meal plan iyswim. Even though she's not technically on a meal plan anymore she's very reluctant to give up these self imposed rules.

Because I think she is autistic (loads of signs since birth) I think a lot of the rigidity around rules is linked to that.

She is better than she was though, for example yesterday she couldn't take the dog on a walk and fit in driving practice with me. When she more unwell nothing would stop her going on that walk but yesterday, although she was conflicted, she decided she wanted the driving practice more.

The downside was she refused her evening snack to compensate 🙄

She did go out with her friends and had a macdonalds and pick a mix though.

I think im similar to the poster who said they considered their dd to have some weird eating habits rather than ED (I'm paraphrasing 😬) Dd eats enough to maintain her weight, she eats a wide range of foods, no fear foods, she doesn't compulsively exercise , she is independent with breakfast and lunch so it's just the 'rules' that are left to tackle now.

@Girliefriendlikespuppies I hear you! It's hard to unpick where the line is, what is ED and what is rigid thinking that is a longstanding part of DD's makeup. She has rules about all sorts of things not related to food, I do sometimes wonder whether her rule book could just have easily fallen open on a different page and we wouldn't be where we are now!

(PS the toastie was for DD!)

So interesting hearing you talk about the rules your DC have. DD definitely has rules about all sorts of things. It has improved a bit since WR but there's still plenty! I see it as part of the vulnerability to ED. I saw an interesting book about ED being an addiction. Has anyone read it?

As unsupervised lunches aren't going very well, I'm going to focus on trying some fear foods. It was pasta tonight and she said she enjoyed it!! We also went out for the afternoon and she made lunch (pizza) and had a snack on her own - sent selfies of herself eating. I know it's possible she didn't eat it but we have to start with independence somewhere.

https://www.amazon.co.uk/Addicted-Energy-Deficit-Neuroscience-Restrictive/dp/1739395506

How do you edit?! I meant we went out and she stayed at home and ate lunch alone. Sorry not clear at all!

@Eyelashesoffire that's good news, so pleased she managed lunch and snack. And awesome news about the pasta! I haven't read that book, looks interesting though.

I haven’t seen the book @Eyelashesoffire but a couple of therapists have told me that it is an addiction like alcoholism or gambling which helps me understand why recovery is so difficult.
i also found it interesting to be told that the 3+3 gets them back into the habit of eating again, the idea being (I think) to remove the fear I.e. exposure therapy. I had initially just thought of it in terms of WR

I see lots of similarities between anorexia and alcoholism, it definitely feels addictive in nature to me.

On addictions - I was talking to a woman from South Africe, whose sister is anorexic. She said that in SA, they use the 12-step programme/AA model to support people recovering from AN.

@Eyelashesoffire That's a really interesting link. My DD's community team are now saying that it might be better for her to stay at 93% WfH so she isn't as freaked out by body image dysmorphia. Sounds like functional anorexia to me (though clearly much better than where she was). I notice there is a handbook, which goes with it, so I think I'll check that out.

So interesting to hear all your thoughts about addiction. It would certainly explain why it's so hard to overcome.
@NanFlanders this is very much out of my experience but how are they planning to treat the body dysmorphia? Is she capable of "thinking her way" out of this at 93wfh?

@NanFlanders functioning anorexia might just be ok for now. When you think how far she has come in a relatively short space of time it is no wonder that she is happy to stay at 93wfh. I think you have to trust that she will find her way out of this when she is ready. And in the meantime keep supporting her and hopefully as her world expands she’ll find the extra motivation needed to push through to full recovery. Sending best wishes to both of you

Hmm I wouldn't be happy with that tbh, it smells of professionals also being fearful of weight gain and thinking weight gain equals a poor body image. My dds Camhs team also said similar things when dd got close to 100% wfh and it was at that point I thought you're talking rubbish 😬

I think Tabitha Farrah talks about this fat phobic attitude from professionals and points out it is very damaging, you risk leaving your dd in purgatory. Not very ill but not recovered either 🙁

I don't know, it's really hard.

@Shanghai101 @Girliefriendlikespuppies I kind of agree with both of you. I do think NHS guidelines are fatphobic (and sexist), and, from my reading of Tabitha Farrar and the Minnesota starvation experiments, I think a temporary (or even permanent) overshoot is a good thing I'm also aware though that I have limited leverage. She would never comply with FBT and had 8 hospital admissions for medical stabilisation in a year. She will 'age out' of CAMHS in just a few weeks and is ambivalent about adult services - if I go in hard, she'll just refuse to go. We have the feedback from her autism assessment tomorrow, which I'm hoping will be helpful. @Girliefriendlikespuppies, is your DD on the waitlist for an assessment. I know mine has found it helpful in terms of understanding herself.

She has come so far though that for the moment I'll take functioning anorexic, over non-functioning, psychotic and desperately physically ill. She is working so hard to fight the thoughts - had a Nando's and cocktails on Friday night out with a friend, but had a meltdown on Sunday because she was scared of going to a cafe to have a smoothie with her brother. She did pull herself together and get there. She made herself go swimming even though she got really distressed in the changing room at how 'fat' she thought she looked in her swimsuit. She wants to have a life now: whereas 9 months ago she was saying it was cruel to keep her alive. I'm massively proud of her.

In other news, on 8 Feb, she and I are going on our first holiday together for 4 years. Her very kind godfather has gifted us vouchers for a week in a hotel in Tenerife that he once took us to when she was little and she has always remembered it as idyllic.