Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

“ and DD burst into tears. She said she feels like they're telling her what she's going through isn't real and she now thinks she has to try harder as she's clearly 'not thin enough' to qualify for specialist help.”

@PermanentlyExhaustedPigeon80 I would go back and question their diagnosis, complain to PALS , ask for a second opinion - diagnosis with a specialist ED psychiatrist. I’m so sorry that you are having to fight this battle as well as the eating disorder.

From my own perspective, my daughter did think she had to try harder and that she wasn’t underweight enough for help but she was never able to vocalise it. The eating disorder took advantage of her being discharged for lack of engagement to mean that there was nothing wrong with her and that I was overreacting. She didn’t have the insight to know that it was real and that she needed help - not until she became dangerously underweight and everything hurt, even lying in bed.

I think the danger is that your daughter will now lose even more weight to prove that she has anorexia. If you can,, book an appointment with a private ED psychiatrist and get them to assess her and explain the science to her. And even to explain why CAMHS acted in the way they have. You may need to have a conversation with them beforehand or communicate with them via email so that they can use the time with your DD efficiently and effectively. Hearing it from somebody other than Mum can be very helpful.

I know these appointments are very expensive but the most important thing is that your DD continues with her meal plan and re-establishes eating. The cost to your family in the long run will be far greater if not.

Sending hugs. It shouldn’t be like this.

@PermanentlyExhaustedPigeon80, I’m so sorry you are in the position of having to argue your case for diagnosis - it’s taken us two years of repeated referrals/GP/dietician/a&e/counselling but DD was never hospitalised and has been consistently between 76-82% wfh through all that time. Her diagnosis came after we started asking her closed questions that she can just nod to rather than have to speak to respond to - she watched a video on anorexia at school and we took that to the ED clinic then asked her “is that how you feel?” After each segment.

Hang on in there, you’re not crazy and you’re not failing as a parent. Your gut feeling is likely to be correct but you might have many more hoops to jump through yet. Try to stick to a meal plan with calm compassion, and start each day fresh.

Thanks everyone - that's reassuring, if depressing, to hear. We definitely felt gas lit, and couldn't understand why they were so reluctant to diagnose DD. Their argument was that she has disordered eating, rather than an eating disorder, but the distinction seems very fuzzy to me, and I'm worried CAMHS don't have the specialist expertise needed to help her with the eating difficulties. I realised yesterday that she was on a specific Meal Plan when she left hospital (which the ED team who were seeing her as an inpatient - the same team who just discharged her back to CAMHS - said was below what she needed in terms of calories) and we now have no guidance or support on when to try and increase, and how to do this. It seems mad that they've just cut us off, literally one day after she came out of hospital.

The team claim it's not about weight, but DD is around 100% wfh, so I'm sure that's a factor. A private specialist we've been seeing said when he worked out her wfh as if she was 17 instead of 13, she came out closer to 90%, which is probably more accurate as she went through puberty early and has the body composition of a much older teenager. We'll wait for the report to come through and work with PALS to decide what to do next, but I'm just so disappointed and I know DD feels let down and abandoned. While she's eating okay it's not so scary, but last night she had a meltdown about her dinner (I'd weighed out the pasta as dry weight, when she thought it should have been cooked weight - I still don't know who was right!) and refused to eat it. Luckily we managed to persuade her to have something else, but for a moment I was so frightened we were about to go backwards again, without any specialist support.

I'm sorry to hear others have experience similar reluctance from professionals. Everything I've read about early intervention suggests it would be safer and more effective to over- rather than under-diagnose. I've felt all along like the underlying message is 'come back when you're more unwell' and this experience just seems to confirm that. DD actually said something like 'I never understood before why people ended up in mental health units or suffering with EDs for years before, but now I think I do'. I know there are other factors too, but the total inadequacy of current services must also be contributing to the poor outcomes. I'm beginning to think this is yet another example of everyday sexism - I wonder how things would look if 90% of ED sufferers were male?

@Shanghai101 - we'll definitely look into a private psychiatrist or second opinion, although even those services seem to be pretty limited in the ED field. If anyone has any recommendations, please let me know!

@NanFlanders - glad it's not just me that was bewildered by the outcome! Like the girl you describe, I feel like there some of DDs behaviours are being picked up as not typical of AN. She's also autistic and suffers with anxiety, emetophobia and OCD, and so quite a few of the AN symptoms we are seeing are being put down to those other conditions. She has been restricting fairly consistently for 2 years, and has lost 10kg in that time (5kg in the last 8 weeks) - however, she has also had a few periods of relatively normal eating (2-3 weeks each at most). During these times she has still controlled calories, but allowed herself more like 1600 than 500-1000. This has generally been when she's felt monitored, or needs a break from the effort of keeping calories so low. She's told us that whenever she's eating more, she always knows she's going to go back - it's just a matter of when. She does have elements of ARFID, but she's been very open about the restricting being about losing weight. She described this current period of sticking to a meal plan as a 'pause', and said she's okay for a few weeks as long as she maintains her weight so doesn't 'lose any progress'. The ED team said these behaviours weren't typical of AN or any ED, hence the refusal to diagnose. I'm not an expert, but I have done lots of research, and to me quite a few of these behaviours scream AN, but everything seems to be attributed to anxiety. It was so sad to see her openly asking for help (which is so hard for her to do) and then being essentially told 'no we can't help you'. I also think her insight into her own brain works against her, e.g. they think that if it was true AN she would be in denial and wouldn't be able or willing to articulate her plans to lose weight in such clear terms (basically they think it's a choice, not an illness).

My other worry is they think we're pathologising her behaviours, in order to stick a label on it - to make us feel better (like that awful tabloid stereotype of middle class parents demanding an ADHD diagnosis to explain their kid's bad behaviour). I can't think of any other reason they would dismiss our concerns so readily, and ask us things like 'what do you hope to get from a diagnosis?' or 'how do you think we can help you?' - both of which feel impossible to answer. Ideally I feel they should be telling us that, not the other way around!

Hello everyone- so sorry to hear about the reluctance to diagnose- especially within earshot of your dd.
I’ll never forget the Jr ER doc when I brought my distressed ds in after he had self-harmed - she was dictating for the nurse and said in front of ds the cuts were ‘superficial’. My poor ds, he was desperate for help and did ask me on the way home what he needed to do to be taken seriously. I was so angry with the thoughtlessness (still am).
I thought dd was diagnosed v quickly and was surprised at the time. Obviously with hindsight they were completely right. Dd had lost about a stone and had v disordered eating for about 6-8 months. Now obviously lost more since.
Could anyone tell me how to calculate wfh%?
Dd still not engaging with anything. ED team were here again yesterday to talk to her through her bedroom door (with no response) and they will come next week also.
re unusual safe foods like chips-dds go to is McDonalds, brioches and occasionally donuts- it’s still possible to lose weight steadily while eating these foods. It’s a numbers game and dd is v clever about it.
im at a complete loss as to how to help her realise that she can’t continue what she’s doing, and have resigned myself to waiting for her to deteriorate enough to need hospital attention.

I wonder if we are under the same trust @PermanentlyExhaustedPigeon80 , I had those exact questions while internally screaming “help us!” but feeling like a huge failure as a parent for being a drama queen.

@Spendthrifting , use the NHS BMI child calculator for your child’s current weight and height, it will give you a centile. Go back and tweak the weight until you hit 50th centile. Divide your child’s actual weight by this ‘ideal’ weight and multiply by 100.

Regarding lack of diagnosis, I agree it’s baffling. DS was not given a diagnosis of an ED and we have now been discharged from the ED team and apparently been referred to a generic dietitian who we’ve yet to see. Everything put down to autism and it’s been suggested that this is as good as it’s gets for DS.

I read a sad article in the Chronicle this week about the death of an autistic teenage girl last year with an ED. Not even seen in person or weighed by CAMHS but discharged for lack of engagement. A few parallels with DS and his care (or lack of). DS hasn’t been weighed by anyone since March. Apparently GP is supposed to monitor weight going forward. Last weight we got off him he was 77%wfh

DS is currently doing better with his eating so I’m not too concerned at present. He’s not eating enough to gain weight but not so little he’s losing.

www.chroniclelive.co.uk/news/health/teenager-died-cramlington-hospital-in-32102132.amp

@Glitterfarti - thank you!
I have to guess at dds weight given she refuses to be weighed since April but I think she’s around 80%wfh at the moment.

It's been quiet on here. Hopefully this is a good sign.

We are plotting along. Still regular self harm, issues with body image, a lot upset over meals but managing to keep the weight stable-ish (she has refused a few weight checks so not completely sure). We had the right to choose NHS ASD assessment 4 hours from home. And she didn't speak so they couldn't even complete it and we are waiting for a 2nd opinion now (no idea how long that will take). But with loads of support through Camhs and EHCP sorted, I decided not to stress too much about it but I am a little bit frustrated. I find the Summer hols hard with both DDs at home and mostly working but we are having a week away later this month.

Hope everyone is doing ok.

It has been quiet - i hope everyone is managing the school holidays which I imagine are hard work without the routine of school. My daughter finds unstructured time hard which means I have to fill a lot of time…. After two years out of education, I’m hoping she will start college in September. I’m trying to keep everything on an even keel just at the moment to maximise the chance she can settle into a’levels. She is managing to maintain her weight just about. It’s still very low but she’s been at home for three months without any talk of being readmitted. Low bar I know but it’s a relief.

i hope ypu have a good holiday @Curlyhairedassasin . We went away in June. Not easy but I was happy to find we could all have fun together after the horrors of the past two years

Still swimming! Meal plan was more or less consistent but she’s now hit 90% and been discharged by dietician so it’s all gone to s*. We need to go to plan B (Fresubin) normally once but sometimes twice a day. Other DD recently diagnosed with autism. Going on holiday and don’t want to make meals a drama but quietly freaking out! Hope everyone else is hanging on in there…

Hello. I am new here. My daughter was in an eating disorder unit for ten months and she has been out three weeks now. I’m struggling with the idea that this is forever. It’s so relentless isn’t it? With the meal plans and snacks. She is doing well but had a blip today and refused her snack, it’s really got me down. Sometimes I just don’t feel strong enough to do this

Welcome @Lollipop, sorry you’re here. I hear you, it’s a slog. It’s ok to have crap days, for you and your child, and some days you’re running on empty so do what you can and start fresh tomorrow. This thread has gone quite quiet so I think many are in the trenches over the summer, but there are positives on here too :)

Welcome @L0LLIPOP - though sorry you find yourself here. Try not to think of this as forever - there are so many stories on here of kids that been through it and out the other side. My DD was also in a unit for 9.5 months and in general 8 times and off school for over 2 years). She did relapse for a couple of months when she first got out of the unit, but is now a healthy weight, eats a good range without supervision, has friends and a summer job, and (if everything goes okay on Thursday) off to uni. Hang on in there - you and she can do this. I would also say, this thread was invaluable during the darkest times. There are a lot of experts by experience here. Sending very best wishes x

Oh thank you to both of you! I was having a difficult day. In reality she is doing so well, such a different place to last year before she was admitted. She was so unwell and completely isolated. She now sees her friends almost every day (inbetween all the eating!). She was lucky enough to be able to continue her studies in the unit and is starting second year of A levels this September. Good to hear a good news story @NanFlanders! So pleased she is doing so well.
I know there will be ups and downs on the way but I must remember how far we’ve come.
Incidentally, anyone else’s marriage in dire straights as a result of all this?

Hello, checking in for some support as my 14yo DD was diagnosed with AN in May. We are under the Maudsley, which she hates.

Everyone’s different of course but we fought this by finding what she values most and saying if continues with the ED she loses that backed up by ED psychiatrist. Then did magic plate forcefully to break the habit. She’s put on 8kg and is eating quite normally and has done since May. Not complacent but hoping we out of it. She’s NT though,

@lollipop it’s good to reflect on how far she’s come every so often. I find that really helpful too.

My daughter being in hospital was the hardest thing I’ve had to deal with in my life so far. It put a lot of pressure on our relationship. I don't know if it’ll survive but I will try as hard as possible though because this horrible disease is not going to take anything else away….

Sending love, the first few weeks after coming home are really hard. Every wobble sent me into panic. I hope your daughter manages today x

Hi, I’ve been reading the posts for a few months. My daughter is NT and has AN since Jan. Quite a long and complicated story but resulted in medical admission and not quite finishing GCSEs. Since discharge she struggled more and ended up 70% and tier 4 referral. The input is working well, it’s not inpatient as such. We are really trying to avoid that if possible. She has tentatively started to engage in 3+3. Lots of rules and lots of refusals but very slowly gaining last week. Finally.
My main question is school. The one thing she desperately wants is to start 6th form. It would be a new school so starting on the first day or even week is essential. I doubt could start much later successfully. It’s the one reason she gives to enter recovery. Does anyone have any experience of being at school in this very early stage of recovery. She was at her previous school at 75 % and physically coped quite well. I’m aware 80% is the normal bottom end. In DD case I feel sure going would mean continuing recovery and being stopped I think would mean and huge and catastrophic backward step in weight. Just wondering if anyone continues school in the 70s (75 up maybe) and if not does anyone have experience of re enrolling in state a year later.
Due to moving areas she has no local friends and would be entirely isolated if no school.
any advice hugely welcome please.

@Tops16 two years ago, my daughter started 6th form at that sort of stage. She lasted a few weeks but wasn’t very well and was in hospital by half term. She is about to start again, still about 75%. Same school but new students as her peers are getting their results on Thursday. The College are prepared to take her with a risk assessment. I doubt she’ll do much extra curricular stuff at the start as her treatment programme takes a lot of time and meals are probably 31/2 hours a day. I am planning to take her to reduce her energy expenditure travelling and I will be doing snacks and lunch either there or at home. I hope that it will be a step in the right direction but it’s a big demand. She is doing one a-level with a tutor which had the advantage that it could start mid year and could continue if the rest falls apart. Hope this is helpful but others will have more experience than I do.

@Shedqueen thankyou for your reply. That sounds really positive for your daughter. I will have a look at online A levels also maybe.

Hi. I'm not sure I've even posted on this version of the thread, but was here a while
ago while my daughter who is now 14 was going though the early part. We are now 2 years in and I'm feeling so stuck. She has been weight restored for at least a year now, she was about 116wfh but has gradually dipped, and was less than 100 a few months ago after a school trip where she just couldn't manage to eat without us preparing and prompting. When she dipped below 100 we saw a worrying resumption of behaviours like throwing her snack down the toilet, but that does seem to have stopped (but who knows!)

And so this is where we are - she will eat whatever she is given, but will never eat a crumb more than she is required to. So no jelly baby in the car on the way somewhere, no extra scoop of icecream after dinner, if it's not part of a predetermined meal or snack it doesnt go in.

we stopped working with camhs because our worker told her that the only problem was me, and we have started working privately with someone who seems to be a bit more able to hold her responsible for (age appropriate) choices she is making re eating.

but I just feel so burnt out with it all. I have just come home from work to find she has had the smallest version of a snack she could possibly have, and we have had a rerun of the same argument we have all the time about how she needs to actually take responsibility for eating enough!!

I just don't know how long I can carry on with this, and I don't get why she doesn't want to do this last tiny bit of taking responsibility and moving towards actually recovering!! Rather than being stuck in this crappy limbo where she is constantly being reminded and checked up on.

Does anyone have any thoughts about what I could do now? Apart from running away?

so so frustrating. We are beyond the part where her health is immediately threatened, but I can't see how she will ever live an independent life, and the thought of doing this for the next however many years isn't something I can even contemplate.

sorry for a huge moan. Any ideas gratefully received about how others have turned the last corner. I realise this is very focussed on me and how I feel. I know it won't be a barrel
of laughs for her either, and I just wish we could move forward. Aaaargh!!!

hi @greydoorsorry to hear that things are so hard. My dd is similar in that she sticks to certain rules very rigidly and has struggled to make the transition to eating independently.

Whst else is your dd doing? Is she at college? Has she looked for a pt job etc?

I think what helped my dd was having other things that came in that she wanted to do and could only do if she ate enough iykwim.

If your dd eats okay when you prep it them I would just keeping prepping it (as frustrating as that is) and accept this part of recovery can take a very very long time. I was prepping all dds food for at least 2-3 years 😳 and I’m still prepping dinner.

Dd slowly took responsibility for breakfast and with some difficulty lunch. Lunch was always the meal she struggled with the most though.

Hi everyone, sorry I haven't been posting either. I have trouble keeping up with everyone's posts and situations and then i feel guilty 🙄

Not many changes here, no worse though, which is great! DD still very very underweight, still restricting/"unable" to eat properly as her "stomach doesn't like it". But she has regularly been eating 1-2 meals a day, and sometimes a snack as well, AND she often does fetch these meals herself!! Which is amazing. So I guess there have been positive changes. Still a lot of body dysmorphia. Still going to therapy, which is also great.

I just wanted to post something that helps me, seeing as PP's have sounded so overwhelmed. It seems like such a silly little thing but I do find it actually really helps. I have a gratitude journal that I write in every night before bed. It has 3 lines for each day. The first one, my rule is I MUST make it about DD. So even when she's had a really bad day (and hence I've had a really bad day!) and I feel like we're going nowhere, everything is shit and nothing is ever going to get better, I sit there and think until I can find one positive thing that has happened with her that day. It can be as simple as she ate 1/2 of dinner, or she had her multivitamin even though she really didn't want to, or she sat outside in the sun with the dogs for 5 minutes, or she caught up on sleep, etc etc. It just helps me to find a tiny ray of sunshine on a difficult day.

@greydoor I can hear your frustration and totally understand it. I remember you from earlier threads.
My DD was 14 when weight restored and she was not able to manage food herself for a very long time. The behaviours of picking the smallest snack, or the least calorific thing on a menu (grr hate calories on menus) continued for years. I guess also at play is their general immaturity because they are young anyway and AN halts their maturity for a time, so it is all delayed .
I suppose what I am saying is that although frustrating 1 year does not sound like a long time. I made all her meals and packed all her snacks for at least 2 years.
She started making her own choices at breakfast first and then started school lunches again and did well. But I kept an eye on it all for at least another year.
I would say that late in year 13 she suddenly properly stepped up and shook the AN off. Started choosing steak instead of sea bass. I can't tell you how excited I was when we went to a restaurant famous for its steaks and she actually ordered one. It had been 4 years from WR at that point.
I had stopped policing her but that felt like another step in recovery.
So yes its a long haul process. And exhausting. You have my solidarity.