Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

I’ve sent you a PM with the details. :)

@Shanghai101 I suspect you're right, I've totally neglected myself and tried to put both children first especially my child without Ed, every spare second has been spent trying to maintain some normal for her.
We made a list of all the foods that haven't been eaten since this began or ones he's scared of. Every week we pick one or two challenges and he has a week to do them, if he doesn't pick a day then I decide ( I am trying to give him some control back and choices but I'm still firmly in charge) we'll do them 2-3 times that week and after that they're on the meal plan and included every week. There was an awful lot of resistance at first (still sometimes now) but now he's much more accepting that it needs to happen and before he became unwell he wasn't fearful of food or planning his life around meals/snacks. We keep saying this way he'll have more freedom like he used to

Thanks Prosecco, really appreciate your reply. I think it might be too soon for us. Whenever we introduce fear foods, whist she manages them, there is normally some form of restriction afterwards.

I really like those ideas Prosecco. Idk if it would work with my dd, who the ED Coach suspects has PDA. I haven’t added any fear foods in at all. That takes so much energy. But you’re right, it’s the way out. Freedom.

It has taken us 10-12 months before we could even consider this, and he does sometimes ask or chose a smaller or easier evening snack sometimes I allow it and other times stand my ground mainly just in case the Ed it still lurking! I hope one day I can relax more

@Minicooper The Intensive Treatment Program at the Maudsley is simply fantastic and takes children under 16. They completely turned everything round for my DD. You would need a referral from your GP/ED team and it may depend on where you are based - I am aware more day units are being set up based on the Maudsley program. Very best wishes, don’t give up hope it really is possible to kick this awful illness into touch x

@Brokenpoppet Thank you - that's good to hear. I'll look into it.

@JoyousCyanCat how are you getting on? I'm guessing your daughter has started at Arc? I do hope it's helpful.

Holy smokes! This just played and even although I’ve listened to it countless times before today it just really resonated with me
now as the mum of a child with AN and other mh struggles.
It’s the song by Birdy - keeping your head up. I’ve shared a you tube with the lyrics as I think there is something quite powerful about seeing the lyrics as she sings(if you search for birds keeping your head up and lyrics you’ll find it if you don’t do clicky links)
I may have needed a tissue or two!

m.youtube.com/watch?v=emNH4oBtbd8&pp=ygUhYmlyZHkga2VlcGluZyB5b3VyIGhlYWQgdXAgbHlyaWNz

Hi all, I've not posted for a while but been dipping in and out and following along. I am sorry that so many new names have found themselves here, but glad that you have as the wonderful women on this thread have so much experience and are so incredibly supportive. It was pretty much my only support through the darkest days.

Just thought I'd give a bit of an update on things our end. To recap, we noticed DD starting to restrict around Jan 2023 (although in hindsight the seeds of the problem began a few months earlier). At first it was gradual, just small tweaks like no longer wanting desserts, and competing with friends on daily step count - we noticed, but didn't want to make a thing of it. It began to escalate and by April 2023 she had lost noticeable amounts of weight and the thoughts had really taken hold, she was throwing snacks away at school, meals were becoming smaller and smaller, and she was compulsively pacing at home. We tried and failed to get help from the GP and CAMHS and things continued to get worse until July 2023 when all hell broke loose and she was admitted to hospital on medical grounds,due to low heart rate, temperature and BP. Once stable she moved to an under 12's psychiatric ward, where she remained for 4 months.
She was discharged in October 2023, at 94% WFH (from 76% on admission) and established on a 3 + 3 meal plan. Hospital had been traumatic for her, her anxiety was sky high, she had a lot of healing still to do, but physically she was in a far far better place.
Gradually since then, she has continued to put on weight (now at 103% WFH) and recover mentally from her experiences. In the interim she has been diagnosed autistic and that has been a bit of a game changer for her. She is finally able to understand why she experiences the world the ways she does, and it has opened doors for her in terms of being able to articulate her needs, and understand her reactions. I believe that undiagnosed autism played a key role in the development of her ED.
She still has anxiety, and some rituals have developed around germs and handwashing, which we are working to gently challenge. She is still rigid about food, won't eat certain things, sticks to the 3 + 3 structure, with the same breakfast and snacks every day. It's not ideal, but it works for her and is safe, and allows her not to obsess over food. Viewed through the lens of autism it makes sense. Almost certainly she is recovering not just from anorexia but also from autistic burnout and she needs time and space to do that, but we are slowly seeing glimmers of our girl coming back. For a long time she didn't want to leave the house at weekends, and going out took a lot of persuading (and prewarning) but she is now starting to ask to go places (e.g. shopping, cinema etc) which is a big step forward.

Yesterday she was discharged from CAMHS (although still under psychiatry for meds) and, although DH and I are nervous, it feels like the right time. I don't think she is fully recovered, but she's ready to move on. We will stay vigilant (I don't think we will ever truly relax again) . I am hopeful that a focus shift away from food, weight etc, may actually be helpful for her in terms of moving forward and her relationship with food becoming more natural (she has a PDA profile so taking the demand away may well actually allow her the freedom to relax her rules). We have felt a bit stuck and I think this may be the next step we need. Time will tell.
Anyway, I just wanted to say to all of you who are in the depths of this illness, things can get better. I couldn't see a way out at some points, and unfortunately for us, we couldn't do it at home (although many do), but please hold onto the hope that people can, and do recover. Your DC are still there underneath it all, and you will find them again.

Great to hear your update, @GrannyRoberts! So pleased for you and your DD. I remember when you first joined the thread and things were so grim. (Getting an autism diagnosis was really helpful for my DD too - it does seem to be a major risk factor.)

@GrannyRoberts it is so lovely to read your update. Thank you so much for taking the time to share. Yours is one of the names I remember from when I first joined this group. At that time my daughter was also very ill and suspicious of everything I did so I was afraid to post too much in case she recognised me. It seems to me that the length of time it takes them to reach rock bottom also seems to correlate with the length of time it takes them to recover. It took my daughter a long time to become seriously unwell and it is taking her a long time to recover.

I would be really interested to know how having the autism diagnosis has helped your daughter. When we got our diagnosis we didn’t really get any support, just some websites to read etc. I know or strongly suspect that it is her neurodiversity that is making recovery harder but I am not sure if there is anything we can do about it. My DD didn’t get her diagnosis until she was in sixth form and it was hard for her to accept it. I need advice you have would be greatly appreciated. But mainly, I just wanted to say that I am delighted to read your update and wish you and your lovely daughter all the best for the future.

Anyone that's been signed off from camhs had conflicting feelings about it? Tomorrow may be our last appointment. Im happy at the progress she's made but also sad and worried without the backup that things may slip. Shes already increasing her exercise but Im pretty confident I can handle it. New colleague started and said she had anorexia she struggled for 20 years but the last 10 years she recovered. The thought that she will still have these thoughts for years is really horrible. I wonder how they manage to quiet the noise. What are the chances this will be it? Is it highly likely to rear it's ugly head again later maybe during exam time or uni when I can't keep an eye on her. As parents are we always going to be in a state of worry?

Thank you @NanFlanders and @Shanghai101, I'm conscious that a lot of the time people post on these threads when things are really bad, but I remember how uplifting it could be to read stories of progress so wanted to share. @nan I also remember how grim things were for you when I first joined this thread, and for me, you and your DD gave me hope when we were really struggling. We're not out of the woods,but I just realised how far we have actually come.

@Shanghai101 It's hard to explain how the diagnosis has helped her. I am not sure really whether it's helped specifically with the ED, but what it does seem to have done is allow her to make peace with who she is. Which means she understands herself more, and is able to advocate for herself. She has been reading a lot of books, mainly fiction books with autistic lead characters, and I think this has helped her to understand that there are others who experience the world as she does. I believe that for her, autism contributed to her ED in a number of ways. "Healthy eating" advice at school was taken literally and to extreme. She had extremely high levels of underlying anxiety from masking and navigating school etc, and that anxiety manifested as a fear of illness (sickness) which she tried to offset by eating healthily. Once the weight loss started, the anorexia kicked in and spiralled.

I am not an expert in autism and anorexia, there are others who write and speak about it very eloquently such as Livia Sara in her book "Rainbow Girl" and her podcast. I understand that in some cases the FBT treatment model is not as effective in autistic individuals. However I don't think there is an evidence-based alternative so it's a difficult one. We have, on our own instincts but also on the advice of her (former) care team modified slightly - not pushed fear foods for example. DD has always had choice in what she has for meals and snacks (as long as calories were sufficient). We've also had to accept that, there may always be some rigidity around food, as there is in other areas of her life, and that for us, achieving complete food freedom may not be realistic. I suspect that the more we relax, the more she will - placing demand on her has always been counterproductive, but time will tell.

@Whippetlovely yes, we were discharged yesterday and definitely have mixed feelings about it. I don't think I will ever truly stop worrying, the trauma is too deep. DD sees discharge as a new chapter and moving forward from that phase of her life. She says "I don't need CAMHS anymore". I hope she is right, but I will be keeping a very close eye on her.

@Shanghai101 I should add that DD did get some post diagnostic support - her CAMHS nurse was getting nowhere talking about the ED stuff, so she spent their sessions talking about autism with DD, looking at her autism profile to identify strengths and support needs etc, so actually that was very helpful. SLT also did some work and made recommendations to school. We were lucky in a way as most people don't get that support, but as she was having regular appointments post hospital discharge then that's what they focussed on.

That's great news. I will see tomorrow as last time she had lost 1kg but they weren't concerned so if she's not lost weight this time I'm sure it will be Ok. Are you carrying on with the 3 +3 now or is it a case of eat when hungry? I'm conflicted as dd says she isn't hungry and doesn't need the snacks a lot of the time, they have said true recovery is eating when hungry that may be more on one day less on another but worried about letting things slip too much

@Whippetlovely DD still has 3 + 3 by choice. She doesn't eat anything outwith this. But as alluded to in my earlier post I think this is most likely because she feels safe with the routine and doesn't feel a need to change it. I am not sure how we get from this to more intuitive eating, but then I wonder whether it really matters, as long as she's eating enough. Do you think you could give your DD a timescale - e.g. 2 weeks of "eating when hungry" to see how it balances out - does she eat more on some days, or is it just less, less, less. With the clear expectation that if you find she's not eating enough overall then she needs to go back to 3 + 3? It's a very tricky one. Phase 2 FBT gives back more control in a gradual way, I am not sure how closely you've followed classic FBT but if you read up on phase 2 there may be some ideas that could help (I believe Eva Musby's book/website is good on this).

Whippet I would continue with 3 plus 3 for a while yet, in fact I'd keep it going as long as possible. It's just too risky to let this slip imo, anorexia is very much give them an inch and take a mile type illness.

My dd was discharged from Camhs over two years ago and we still follow 3 meals with at least a couple of snacks type routine. The difference now is dd makes her own breakfast and lunch, I still make dinner and then dd will get herself a snack in the evening.

I keep an eye and will say if I think she's not eaten enough. Generally now it feels fairly normal but I don't believe dd eats entirely intuitively and if she was hungry after her evening snack would herself something else to eat.

Granny I'm so pleased your dd is doing well, your dd sounds so similar to mine, almost identical story actually although my dd managed to dodge admission just! It makes me feel a bit sad I couldn't get an autism diagnosis for my dd, I really tried but they said she's 'borderline' 🙄 so frustrating.

Dd very much thinks she is autistic and recognises that this has very much contributed to her ED.

@GrannyRoberts lovely update. I did wonder how things were at your end esp with DD starting secondary school. So happy to read that DD made so much progress.

@GrannyRoberts @NanFlanders

Can I ask in what way getting an autism diagnosis made a difference? Everyone agrees DD has autism. But the Camhs waiting list is 5-6 years long for an official dx. I just started the right to chose process and hope we get a diagnosis that way some time in 2025.

@Curlyhairedassasin I've been keeping up with your story - so sorry that things are still so difficult.

Re how autism diagnosis has helped DD, she just seems happier in her own skin since the diagnosis. I'll copy my reply to Shanghai from upthread:
"I am not sure really whether it's helped specifically with the ED, but what it does seem to have done is allow her to make peace with who she is. Which means she understands herself more, and is able to advocate for herself. She has been reading a lot of books, mainly fiction books with autistic lead characters, and I think this has helped her to understand that there are others who experience the world as she does".

@Girliefriendlikespuppies it's interesting that they are so similar. I'm sorry that your DD hasn't had a diagnosis. We only got one because her CAMHS team had got to know her quite well and the neurodivergence was clear to them quite early on. Her diagnosis was pieced together from over a year of observations by different clinicians, and also through discussion with me, DH and DD. They did do a partial ADOS assessment which came up as borderline but because they knew her well the team were able to piece things together in a more comprehensive way. They did also do a test called CAT-Q which specifically looks for masking traits, and she scored high on that (which could explain the "borderline" ADOS score). So I think we were lucky in a roundabout way. It felt like a weight lifted from her little shoulders when she got the diagnosis, finally things began to make sense for her. We started viewing things through the lens of autism well before the diagnosis came through, but for her the validation was important. It's frustrating, I think sometimes the assessments aren't holistic enough - having seen the impact this had on my DD I'm so sad that it's so hard for others to get the diagnosis.

Thank you for your replies. I think we've let things slide recently regarding the 3 and 3 and actually she was told to have 4 due to her sports. We've had a bereavement and were at hospital a lot over Xmas and not keeping as close an eye. She will still try and get away with not having snacks if she can. She makes lunch and breakfast and has dinner, her weight looks fine she had two snacks today after running. I guess we will see tomorrow when she gets weighed and will be more on the ball with the snacks.

It's interesting about the autism there is a link. She used to have very autistic traits at the start of this but they have got less and less as she's recovered so I don't think she is really autistic more that is was part of her Ed. I know it there are many kids that have eds with autism.

Granny it didn't help dd that the it was deaf camhs that did the assessment as dd has some long standing hearing loss. They used the ados assessment and said her social skill issues were because of the hearing loss I asked them what about the sensory processing difficulties, black and white thinking, rigidity, obsessive hobbies etc and they shrugged 🙄

Dd was upset she didn't get a diagnosis and feels like being autistic is just something else she's not very good at....

Your dds assessment sounds much better and holistic. I think at some point dd might try again to get a diagnosis.