Support thread 12 for parents of young people with an eating disorder

[greydoor]

Suddenly noticed the old thread is almost full and thought I'd make a new one.

@WaitingForMojo yes it’s incredibly difficult to know what to do for the best when the professionals can’t even agree on the best way forward

Hey everyone, just thought I'd check in, not been here for a while although I've been following everyone's progress.

We came to a bit of a crossroads a few weeks ago. Dd is 116 wfh now, and so we have scaled back the calories she is having so she can maintain that - it seems like that's a good place for her to be. We finally were offered an appointment with camhs, but it was a bit of a disaster. They offered her cbt-e, but were non negotiable about open weighing and having to do food diaries every week. It feels like too much of a change to what we have been doing so far, and so we have come to the difficult decision to ask them to put her back on the list and we will hopefully explore whether she might be more ready for this in a few months. I don't know if they will agree to this.

In the meantime we arranged a 1:1 call over zoom with Eva musby. It was really helpful to get a sense of where she thinks we are up to, and what to do next. She talked about what phase 2 is all about, eg exposure to the fear foods, opportunities for choice, gradually giving chances to have more control etc. So I feel like we have a better sense of what we are doing next.

I'm a bit gutted that camhs were so rigid, and quite unhelpful really. They said it's because they only want to do evidence based practice, but I don't see where the evidence says to leave families for 8 months to do their own thing, and then offer something really different to what they've been doing. I felt a bit disappointed that they didn't start by assessing where dd is up to, how we have been trying to support her, and working out what might be needed. It's a basic take it or leave it approach.

So I came on because I noticed the queries about fear foods and just wanted to say that there's other sources of advice out there, and maybe camhs aren't always the best source of info. I am of course biased, and maybe we will have a great camhs experience one day.

Meanwhile I'm feeling really burnt out. My natural inclination with most things is just to get my head down and power on, but there only so long you can do that. We saw some friends over this weekend and I realise how fragile I feel. Not quite sure how to do anything else other than keep going. I'm hoping we might see a light at the end of the tunnel sometime soon...

Wanted to send my thoughts to everyone in this journey at different points. Xxx

Thanks @Girliefriendlikespuppies. She didn’t really stop struggling. I was just so ecstatic for a brief moment that she was getting a little better and her thought processes were clearer. She was nicer to me. She understood she needed to eat to live. Now it’s just vile to me, swearing, name calling, threats of violence when I tell her she needs to eat more than just carrot sticks and houmous. Our every conversation seems to be about eating in some shape or form. Getting her through her GCSEs, not using up loads of energy… I’ve now resorted to getting her friends involved in this one and sending them very blunt texts getting them to agree to take it easy when they go out. She now won’t eat in a restaurant, just nurses a Diet Coke and watches them eat.

She also won’t engage with any kind of therapy. Dh and I are going to have to strong arm her to CAHMS. We have been advised by a friend of a friend to put her in in patient care, which is eye wateringly expensive.

She continues to lose weight, eating around 700 calories on average. Maybe once a week or so she eats a load of sour cream and chive dip with a few nachos (the only carb she will tolerate) and gets a little over 1000, sometimes more.

I hope your dd enjoys her new job and manages to stay on track with eating. I imagine it takes a long time before life is no longer on a knife edge.

Mummy I think it's your dd who has issues with medical checks because they trigger seizures? I think you will have to speak to her Dr and the school though as on that level of restriction she could become seriously ill very quickly. Is it the ED Camhs she's been referred to?

I think you'll have to balance the physical checks with the risk of seizures, she needs bloods, an ecg and lying/standing bp and pulse checks. The risk of not having them done is potentially her heart will start to fail and you won't realise until she collapses 😕

The vileness to you is unfortunately very normal as the ED kicks off when it's been challenged.

Have you got the Eva Musby book? She has done useful resources on YouTube as well.

greydoor
I saw your dd was offered cbt-e. DD has more or less finished the course and worked very well with my DD. However it is completely opposite of FBT and what is mostly advised here .
i know Eva musby is also not a fan of it....

Thanks @Slowlyimproving - that's good to hear your dd found it helpful. I am really in two minds about it all, I think we have come so far down a fbt type road and trying to sort things ourselves that it feels like switching to open weighing and food diaries, and completely handing over control would be really distressing and could end up in relapsing into not eating again.

How was it offered to your dd? Some of the things I've read say it's offered if a fbt approach hasnt been working / possible as an alternative? I guess I feel like we have been getting on 'ok' with fbt, so I don't understand why she would do better on cbt. I also think they have just offered it to her because that's what they have to offer, rather than because they think it's the right thing for her if you know what I mean. She's also only 13 and I just wonder if it would be too much.

Saying all that she is really struggling. I think she has become anorexic as it helps dampen down anxiety, and her anxiety feels quite high just now. But I'm not sure cbt-e would address that so I'm feeling a bit hopeless about what to do next... I'm back to fighting the urge to run away again!

Thanks for responding Girliefriend. Dd’s ecg was fine at Easter and the cardiologist said it would take a lot longer for her heart to start failing. I do have this in mind. I can pay to get another one done…

Yes she’s been referred to CAHMS and has an appointment on 30th.

I said to dh that we should get her admitted to a clinic over half term (if we go down the in patient paying route as my mum has offered to help). Idk how that would work as she wouldn’t go willingly. She will have done most of her exams by then and only need 2 resits. He was more concerned with prom and that as far as he’s concerned it won’t happen unless she is in hospital. He is totally unrealistic about the point at which hospital takes people with ED in. I otoh am getting to the point of not caring about prom…

Well after things were going so well for a few weeks my DD is starting to resist supper. She has never said she didn’t want anything before she was just pushing through and had done this for about 3 weeks not she’s starting to argue with with us and it’s taking a while before she will agree to have something. She does always have something but I dread everyday wondering how she’s going to react to things now which I wasn’t before as she just pushed through with everything. Sorry just needed to vent to ppl that understand as when I talk to friends they don’t really understand it

Greydoor, have pm you as well.
Yes I think 13 is a bit too young.
It's also something that they have to want to do. I think the first four weeks are just spent on talking about the pros and cons to improve.
The food diary is not just what they ate but also how they are feeling while they eat. And I think when at cahms they analyse what they have written and done
Eg, when DD started sport again she lost some weight. So at Camhs they would discuss this and decide/agree what to do about it.
DD is also still very anxious but it's so difficult to know whether the anorexia causes the anxiety or the other way round.

Just also to mention I used to wait in the car as parents aren't very involved. There are certain times as per the cbte protocol that parents can join after the actual session

@Mumofellie that's the ed annoyed that your fighting back, it's really tough but remember that means your winning and the more you push and restore weight the easier it then becomes. I used to dread any meal or snack and his distress was awful, hang in there.

@Slowlyimproving interesting what you mention about anxiety.
My dd 15 has just attended an initial assessment at a private clinic and they are very much of the opinion that in her case the ED is a control mechanism for her anxiety and that we need to treat the anxiety and find healthy coping mechanisms for it.
She will also be keeping a food diary. She finds seeing what she's eaten quite difficult but she's writing a lot about how each meal makes her feel. It's an interesting insight.
It's a different approach to the NHS ED team which was really just 3 meals 3 snacks, hit a certain weight and see you later.

@guineapigsrule
That’s interesting. Which private clinic? My dd is 15. Most clinics won’t take under 16s. I was presuming in patient care would be needed. I’m dreading the end if dd’s exams because she’s going to want to be out and about everywhere and she is still 15.

We stayed under NHS with cbt-E. I did also contact a private clinic (outpatient ) but not only did they also have a long waiting list (6 months), they would not take DC with anorexia if their weight was too low due to the possible physical problems.
Just looked on their website and it says also "eating disorders young children"

Thanks for the info Slowly. Dd is not yet that small as she started from the top of the bmi… I think she would be ok. But not to wait ages. Otoh she is refusing to engage and admit there is and issue.

@Mummyoflittledragon I've pm'd you.
The clinic we are trying seems really knowledgeable about the asd/ADHD link to EDs which is what my dd needs.

Thanks, that’s brilliant. I’ve responded. 😊
My dd potentially has ASD but masking very well.

Our DDs clinic also says that it is not about food but feelings so they put a lot of focus on therapy. They also talk a lot about finding other coping strategies but unfortunately there isn’t a magic list, just things like breathing, journaling and mindfulness. No quick fix sadly

Not sure how far along you are with your child’s ED sorry just catching up on the thread. With chams they have addressed my dds anxiety as well as her food issue they are hand in hand. Their response is they need to be eating 3 and 3 and be physically healthy before you can start working on the anxiety as the anxiety lessens when the child is eating properly. We have talked a lot in our therapy sessions at chams about her anxiety and we don’t just talk about food. My dds anxiety’s have improved greatly now she’s eating a decent amount. I think they were right there is no way we could have addressed it with her being underweight as the main concern was getting her physically well. They have done exercises with her like red balloon blue balloon and given her coping mechanism's.

Yeah I'm also skeptical about therapy when weight is low and the foods not going in. A lot of the time all kids do need is 3 plus 3 and getting back to a decent weight 🤷‍♀️

I do think it depends on the child though, my dd was never interested in therapy and has quite rigid thoughts (likely autistic) whereas when I was a teen I think cbt would have been really useful.

I've just watched the assisted dying program on bbc1 which was really interesting and terrifying in equal measures. There was a lady in Canada who was starving herself who was fast tracked to assisted dying within 48 hours 😳 it's unbelievable and so scary that the law could change here.

@Mummyoflittledragonsorry it won't let me delete the @

@Whippetlovely we are 3 years in. She was stable for a year or two but has relapsed. She tells me the thoughts never went away even after weight gain.

I think it shows how different the cahms/ED teams are around the country. They never even discussed her anxiety before or after weight gain.
My gut is that classic FBT isn't right for my dd.

The issue surrounding anxiety sounds similar to my dd. Dd has always been anxious around certain things. Recently it has been centred around her medical condition. And she is using food as a means to control. I am sure this will greatly improve once she starts re feeding... if I can get her to eat. At some stage she will also need therapy.

Girlie that’s chilling. The poor woman. Dh spoke to dd last night about her food issues as she isn’t listening to me at all. He asked her if she wanted to go and watch a certain football match next year if he could get tickets (she’s really into sport) and he told her he didn’t know if she’d be around to do that if she didn’t start eating. I hope she’s taken a little of it on board as she’s in absolute denial that there’s an issue. She’s so so stubborn.

I meant to add, I hope the therapy will work this time Guinea.

Yeah, it does indeed depend on child. DD was having 3+3 but kept purging despite me trying to follow her around. After each A&E trip I could see her trying to stop and distract herself.
It was many months before starting cbte and DD was at 76%wfh. Somehow it just worked.
DD also never stopped going to school and for her that was the best.

That’s interesting, because Camhs are recommending both together for our dd 🤷‍♀️

So FBT-AN alongside CBT-E as the therapy part once she reaches weight maintenance phase… in what way do you find they conflict?