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.

Thank you. That is very helpful. I’m veering between thinking it’s probably all fine as she seems to eat ok at home to thinking it’s very serious. Your message was very sobering: one meal a day is very serious. I will make an appointment now.

one meal a day is absolutely not ok if that is all she is having (not sure if I misunderstood)

On school days she isn’t eating breakfast or lunch but is eating dinner - her portion sizes vary a lot as I’ve tried to encourage her to eat to her appetite and not push in either direction.
so one meal a day on school days.
She eats two or three meals at the weekend (depending what time she’s got up)
So based on what I see at home, she is a kid who doesn’t like breakfast and doesn’t always have a big appetite (but sometimes does).
But having learned about what she’s like at school the picture is quite different.
hope that makes sense.

Until today I’d believed that she was eating eg the burger and chips that I can see from the school’s payment app that she has purchased. But I learned today from school she is not eating there.

Hi @Wallrat and welcome. Your daughter is lucky that you are seeking help and advice at this stage as you are key in helping her through this. One of the best pieces of advice I had was “Be Curious, Not Furious”. There is a lot of help for parents and carers on how best to approach these conversations. The Charlie Waller trust has a lot of great resources as does BEAT and FEAST. I would be inclined to take her to the GP for weight, BP etc.

Thanks @Shanghai101. I’ve made a GP appointment and will look at those resources.

@Wallrat just wanted to say it is great that she is eating at home when you support her!!! Make sure you push the meals and snacks there and use your superpower!

Hi everyone I've not been on this thread for quite a few months now but saw it as active just now.
There's some names I recognise on here though. @NanFlanders that is such good news as your dd was so poorly. How are you? I know how much everything took it's toll on you (as with us all).
For the newer people, my DD became very poorly and very thin during the first lockdown. Her GCSEs were cancelled and she simply couldn't justify eating. She hated her thin figure though.
By the time we got into the system for support she was so think that she was admitted on the spot. She was in hospital for two weeks but was the turning point because she was determined to get better.
She's now in her second year at uni at the other end of the country. Fear foods have disappeared and she eats freely. I'm not naive enough to think there's never that niggling though from her, but she's learned to live with it.
Three years ago I couldn't see a way out. It hugely affected my mental health too as well as me piling in weight. But this is proof that there is light at the end of the tunnel

@NCTDN thanks so much for your message, it really really gives me hope. I'm so pleased to hear your DD is so well now. You must be so proud of her. I've also piled on the weight but it's very difficult to talk about!

@Wallrat hi! I could have written your post almost word for word in March 23. If I could go back in time I would go to the GP immediately and get bloods done and a referral to your Eating disorders team. If you can't get a GP appointment see if you can self refer to the ED team. Do not let this drag on thinking it might be ok. Sorry if this sounds stern 😬 but the quicker you can get this under control the better.

@NCTDN thanks so much for your message, it really really gives me hope. I'm so pleased to hear your DD is so well now. You must be so proud of her. I've also piled on the weight but it's very difficult to talk about!

@Wallrat hi! I could have written your post almost word for word in March 23. If I could go back in time I would go to the GP immediately and get bloods done and a referral to your Eating disorders team. If you can't get a GP appointment see if you can self refer to the ED team. Do not let this drag on thinking it might be ok. Sorry if this sounds stern 😬 but the quicker you can get this under control the better.

@Eyelashesoffire this thread was truly the best support ever and other posters messages gave me hope back then x

@NCTDN That is absolutely wonderful news about your DD! I love reading stories like that. Thanks for asking about DD - it's great to have her at home. She's doing well - I'm not thrilled the community team have decided against further weight gain, but she is experimenting with maintenance diets, she is back in school, thinking about the future. Has lost contact with a lot of friends but had re-established her close relationship with DS: lovely to see them cooking together and laughing. Hoping she'll get to uni and find her tribe. I agree with you about the thread - best support ever, including from you! @Wallrat Sorry you find yourself here, but welcome! I agree with everything that has been said about getting to the docs asap. Have a look at Eva Musby's You Tube channel and webpage. Her book is very good too.

Has anyone gone privately for treatment/diagnosis? DD was 85% at the end of November, but has come back down to 81%.

Us trying to feed her isn’t working, so don’t know what else to do, it seems we should let her eat the way she wants until she gets to a point where a&e is appropriate.

Is there a decent app for counting calories? Having seen the post above about 500 per day I wonder how much more than that she’s actually getting in.

@Glitterfarti I use 'my fitness pal' to add calories when I want to add things up.

We looked into going private but it's a) too expensive for us and b) just FTB meal support type stuff and this is what we get from the NHS anyways (but isn't working really for us - we are stuck (but on a higher WFH).

If your DD is already low and she keeps losing, surely you need more support. Do you think admission to an ED ward would help and you should push for that?

Thank you @Curlyhairedassasin, I wouldn’t even know how to go about it, I spoke to ED team yesterday and they say GP should refer us to community dietician. I don’t see how that will help, I’m so gutted that we can’t access help. No one is able to say she’s well and that’s just her build but they won’t say what the problem is, it’s just bat it off asap if it doesn’t fit their remit.

I asked for a paediatric referral and GP said “what would they treat?” So we really are banging our heads against a wall here.

@Glitterfarti whom are you seeing for DD? Is the ED team involved? What kind of help do you get? Support around FTB? we see the dietician as part of the ED team. Strange that they say GP should do a dietician referral.

How much is she eating atm? Really sorry, this sounds all very stressful. We do not have great support through the ED team I feel but yours sounds even worse. Is she not eating with meal support? Is she in school and getting meal support there?

Sorry, loads of questions but I cannot remember where you are at with it all.

ED team discharged her at the end of Nov. They think it’s anxiety, and we should be under CAMHs. We have heard diddly squat from CAMHs.

We were never given meal plans/calorie targets because “it’s not an ED”, so we are just under the GP. GP is lovely but hasn’t read MEED guidelines and only checks height and weight, none of the other clinical parameters.

School won’t supervise meals - we send her with crisps and chocolate for break and it comes back every day. She normally eats breakfast (homemade Nutella pop tart with two slices of bread trimmed of crusts and about a tsp of Nutella) and lunch (chicken burger in a bun/baked potato with beans and cheese/meatball ready meal) then picks round dinner but eats less than half of it. She drinks very little.

She doesn’t fight, just says she isn’t hungry. Won’t wear a coat/proper jumper but she is cold all the time and spends her time out of school flopped on the sofa staring at her phone. She looks bony, and she’s always been pale.

@Glitterfarti that sounds really tough. For us we did have to get to the point where DD was hospitalised before we got any support at all. I wouldn't recommend that route though obviously. As i understand it, children should not lose weight - so any loss at all should be a red flag, whatever the reason. I'm surprised by your GPs lack of concern. Has anyone looked at her historic growth curves? That can give an indication of her "natural" growth curve. For us it was the dietician that did that (but a specialised ED dietician). Perhaps community dietician could do that too? Maybe you'd have extra leverage on the meals if dietician said she needs to eat x amount?

I am so sorry @Glitterfarti. That is shocking. If her weight is that low, she shouldn't really be in school either. I am not sure what to suggest. Hopefully someone else will be along but if she is not eating, weight dropping and you cannot access help and nobody is doing and MEEDs checks, I would be maybe tempted to take her to hospital. It's absolutely shocking that you were discharged. I'd probably throw a complaint in via PALS. I had a few times success with that.

How old is she?

https://anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype/
Eva Musby has these on her website. Their are therapists who offer Skype support. Maybe worth a shot?

@Glitterfarti I am so shocked at the lack of support you are getting. At 81%, my DD wasn't allowed to even go on gentle walks at the ED unit. If you have GoogleFit or similar apps on your phone, I'd recommend monitoring her heart rate daily. If it falls below 60 BPM, get her to A&E immediately **as it means her heart is struggling. Unfortunately, it seems like you might need to go through the hospital route to get the help you and your poor DD need.

DD was admitted go hospital when she was on 83%wfh and was on bed rest. She was only allowed to walk to the toilet. Wheelchair for anything else.

Sorry to be so ignorant but what do the %s refer to please? Is it percentage of a healthy body weight? I need to get to know all of this to know how to speak to the GP at our first appointment next week.
Based on info here or signposted here, I want

• her measured and weighed and this compared to previous (she’d have been weighed and measured in Y6 - I guess the GP should already have this info?)
• blood tests/blood pressure - is there anything in particular that I should be asking about?
• a referral to specialist ED services. If the GP pushes back because she’s not underweight or not very underweight, I need to explain the red flag behaviours of lying about food and getting thinner, mention school concerns and mention the NICE guideline recommending early intervention rather than watchful waiting in EDs

does that sound about right?

I’m so sorry to hear how hard it is and has been for you to get help, Glitter and Granny (and doubtless most people here). I don’t have any advice or experience to offer but I’m so thankful that people who very sadly do are sharing what they have learned. Solidarity to you all.

@Wallrat, the guidelines are called MEED (management of medical emergencies in eating disorders) found on the Royal College of Psychiatry website. It’s quite long but there are crib sheets in the appendix for GP/parents/school etc and they tell you exactly what to look out for with a traffic light system for how to grade the severity.

The percentages are for weight for height (wfh) which is based on an ideal weight for your child’s age and height (50th centile). BMI isn’t considered reliable in children. You have to figure out what weight would give 50th centile then divide actual weight by ideal weight and multiply by 100.

good luck!

Glitterfarti,
Just our experience. DD got discharged from camhs ED, with basically saying she needed to eat a bit more...
I emailed them several times, Inc eg that she had lost more weight, so eventually they sent her another OPA (and said oh, she doesn't look very well...).
I looked for private help as well, Inc where it said they also dealt with ED. However they had a 6 months waiting list, and would also not deal with low weight due to physical issues.