Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@2023istheyearigetmyacttogether welcome (if that is the right word...)
I think you are right to be concerned as your DD is showing many warning flags for an ED.
A change in eating habits without a drop in physical activity will affect weight and it can be v quick. My DD was also 13 and did exactly what your DD is doing (cut out snacks and puddings, only ate meals and fruit, carried on with her sport, added more activity in) and she developed AN quite quickly...
It is v common for energy levels to appear to increase at the start of restriction as the body goes into survival mode and provides more energy to systems that allow for intense food searching (cv system, legs etc). Unfortunately this means the brain is starved of calories first and so weight loss is not obvious but is extremely dangerous.
Also my experience of nutrition advice in elite sport environments is not always helpful. Often they focus on healthy eating whilst neglecting to emphasise that children need far more calories than adults and those doing sport even more. Add growing and puberty into that mix and cal levels needed are way higher than an average woman.

I would sit her down. Explain that you find her new eating behaviours worrying. That you will be insisting on 3 meals and 3 snacks a day and see her reaction
Until an ED is called out behaviour can seem rational even 'normal' to an outsider (I was fobbed off repeatedly by coaches, physios, teachers etc) but as a parent you know that alarm bells are ringing.
Any weight loss (not under medical supervision) in children is dangerous. And for those with a genetic predisposition can lead quickly to an ED.
Please act. If she won't comply book in with GP or refer to ED part of CAMHS. but then come back here for more advice kn starting therapy yourself at home.
Good luck

Thank you @Lottsbiffandsmudge and @Havehope21. That - and all of the other posts I have read on this and the previous threads - is really helpful and informative.
Having spoken to DD tonight, I am wondering if orthoxia might be closer to what's going on. She said that she thinks she eats plenty (typical day being 2x weetabix plus banana for breakfast; ham sandwich, fruit & veg at lunch; toast & ham after school; family meal (eg curry yesterday; chicken stir fry tonight; jacket potatoes tomorrow) in the evening plus a couple of bits of fruit a day) to which I countered that I noticed she had cut out any extras and she said she'd had a muffin at school yesterday and some chocolate for a friend's birthday today.
I explained all of the risks for being underweight at this age, said that I recognised it was hard as a teenager, that her tastes were bound to change but that she had to increase what she was eating and that, from tomorrow, we'd be adding a few more snacks.
Do you have any recommendations for snacks? What sorts of foods is it supposed to be. Can they be "healthy" snacks or is it supposed to be stodge? To what extent does she get a choice in what she eats?

What sort of things did she used to eat for snacks? And lunch/ dinner that she has stopped having. I'd try to go back to those. Normalise those foods.
For me the lunch and breakfast appear quite small. I'd prob add a bowl of ff yog with the banana and other fruit and some sunflower seeds on top (appears healthy, full of good fats!) alongside the weetabix with ff milk At lunch she could add some more food. Hummus with the veg? Cream cheese with the ham? Crisps? etc and a dessert item. Choc bar thing or cereal bar or a flapjack etc. I made flapjacks with added raisins and nuts or seeds and choc chips for added cals.
Snacks were around 200 cals when we were treating DD. She had various things incl nuts, ff milk, homemade cake, yog and fruit, raisins, apple with peanut butter, crackers and cheese, biscuits, toast and nutella, wrap with chicken and salad. Everything full fat and as much diary and meat as poss. They are best for brain healing.
Evening/ bedtime snack was a smoothie made with ff milk, ff yog, banana, strawberries, oats and honey. Packed 400 cals.
Hot chocolate with cream and marshmallows made with ff milk also a good option.
Fruit has very few cals (avr apple 50, avr banana 85) so on its own as a snack it doesn't have enough cals.

And when I say my DD ' had these snacks' that sounds like it was easy. It wasn't. She'd have the same snack day in day out for weeks before we could introduce another. These are things she eventually could eat and only suggestions.
My dd was 13 and didn't really have a clue about cals and only had a rudimentary idea of ' healthy' foods. So she wouldn't touch chocolate but would eat my banana loaf, which gram for gram was prob more calorific!! So she was 'happy' with nuts. Even though a small handful packs a punch cal wise. Often its better to have cal dense things as volume can be an issue for them.

Yes, DD is very naive about calories too. She eats a lot of nuts and dried fruits. She'll also happily eat chicken in a creamy sauce provided there are a few mushrooms in that sauce. Having always had cheese sandwiches, she's swapped those for ham sandwiches and has generally cut out cheddar but will happily eat feta, halloumi & cream cheese. I must take advantage of this.
That's really interesting about dairy and meat being the most healing. I had no idea.
It is also incredibly helpful to know about the timelines, particularly as I can be quite impatient. I checked her lunch box just now and she has added a cereal bar like I said she had to. She's generally well behaved & sensible which is why I'm hoping that, if this hasn't got a grip on her yet and if I as well as her friends and social media have any influence, we may be OK. But I am feeling very, very nervous.

I have been lurking on this thread... Will probably post more background another time if I can do so without outing us.

My daughter has an urgent ED assessment later this week and I have been told to keep her off school. Estimated WFH currently 72% and I am on edge.

DH thinks it is good for her to get out of house tomorrow and go shopping with me. I understand what he is getting at but my head says otherwise (she is off school for a reason) but I know I will be made to look like the bad cop if she doesn't come with me. Does anyone feel that their DH is one step behind?

I would really recommend ordering this book as it has lots of advice www.amazon.co.uk/Orthorexia-When-Healthy-Eating-Goes/dp/184899334X
I would also not assume that she is eating everything in her lunch box - don't raise that with her as you don't want to give ideas, but there is no harm in asking the school to watch for a few days as there is a possibility that things are being thrown away.
In terms of snacks, you can make homemade 'healthy' snacks and increase the calories significantly. Other ideas are avocados, nuts, hummus, peanut butter with toast (swap for thick sliced - seeded or bagels are good options). If you have stir frys, garnish with a sprinkling of sesame seeds or peanuts. Pesto is also energy dense.
Hope this helps.

@mumandbambinos I agree with you. Is it food shopping? Food shopping is a def no.
Advice is always that the sufferer should have no involvement in food prep at all. Incl shopping, cooking, serving etc.
At 72% wfh cal conservation is key so no unessecary activity so other types of shopping not a great idea either if lots of walking involved.
And yes often DP are behind the curve esp if they haven't researched the illness or attended all appointments. There are frequent DP isn't helping posts on here!
Obvs some are great.

Hi 2023istheyearigetmyacttogether

It's good your dd hasn't started looking at calories and I really hope you can stop her going down that rabbit hole. My dd is older and had downloaded my fitness pal at the beginning of her illness, before I knew, and within a short while knew the calories for everything. I shudder when I see cals on packaging and menus. I know it's a way to see how healthy a food is for 'normal' people but so damaging for ED. The traffic light colours cause issues too, dd refuses if she sees too much red.
It looks like you've caught it early so you're in the best situation to quickly take charge and turn it around.

We've always struggled with snacks so often it's just an apple or some grapes so I have to ensure her other meals and drinks compensate so she'll get an extra bit of pasta, rice, mash etc and she doesn't really notice. I bought some big serving bowls from IKEA that make potions look small. Of course getting into a good 3+3 is the ultimate goal but the older they get the harder that is.

Hi mumandbambinos

I agree food shopping isn't a good idea at this stage. I tried it with dd as I assumed it would help for her to choose her own food but was very naive about the anorexic brain at that point. We had many meltdowns in the aisles. I switched to online shopping and kept fobbing her off saying I'd been sent codes for money off etc. She still has brand preferences which is difficult, she knows which brands are the lowest calories, but at least I can fight those battles at home and not in the supermarket aisles.

My dh goes with whatever I say as I do the bulk of researching the illness, preparing food and taking dd to appointments. At first he'd come out with with 'dad' comments like 'You're not fat!' and 'I bet you can't resist a mcdonald's!' but he soon realised that her illness was a lot more complicated than that.

Best of luck with your dds assessment.

At 72%wfh generally the advice is complete soda/bed rest. If you have to go out you may need to hire a wheelchair.

It's v normal to be in denial about how ill your child is and it can take some time to process how drastically your lives are going to change. Don't be afraid to be bad cop, your instincts are right.

@mumandbambinos as others have said, at that weight, she should be conserving as much energy as possible. It is better to do things like crafting, home pamper afternoon, jigsaws etc - all sedentary activities.

Thank you for your responses. She didn't go with me at food shopping. I said I saw advice online. DH is very supportive and is very good at calming her down, and explaining things rationally but I feel that sometimes he's not as realistic.

We had the assessment at the ED clinic (with a nurse and dietitian) and it has been confimed that she has an eating disorder, but wasn't specific. They said there will be dietitian support and family based treatment, with twice weekly sessions. The assessment took a while and I feel like I didn't ask any questions i.e. when the sessions will start (assume they refer to therapy), or what her WFH should be.

We had some time with the dietitian and they put together a meal plan based on a previous food diary from us. DD got worked up about it and was challenging a lot of it. It has made me realise how much control/input DD has developed over all her meals with us :(

She is complying with it so far but switching some bits around on the plan and we let her change something on the first day as we had already bought the food item in advance. She seems to want the snacks fairly soon though after the previous meal, and I think this is because she is worried that she is not going to be hungry enough for the next meal. She seems to be constantly thinking about food!

Her weight is very low and she will be off school for at least a few weeks, and now got to navigate how much to tell others we know (and mainly her friends). She wants to keep it private and doesn't want her close friends to know the full reason. She is trying to come to terms with it all and is very upset about not being at school and stopping her extra curricular sport.

Next appointment at ED clinic same day next week.

Hi mum glad the appointment went okay ish, it's so much to get your head round in the early days it can feel like you're trying to catch up and process everything all the time.

Have you had a look at the Eva Musby resources yet? She's very good at what to say/not say when you're feeding them. Lots of distractions are key and saying on repeat 'yes this is the right amount/yes you have to eat this/yes this is the right balance/you can trust me'

I wouldn't allow any negotiation at this point, you need to make the food away from your dd (she must be strictly out of the kitchen) put it in front of her and expected to eat it. I would have a food snack schedule so she doesn't get to say when she has the snack - that's your decision.

The risk of giving it too soon after a meal is the break between a meal and a snack is then too long which can intensify ED thoughts.

For example we did breakfast 8am, snack 11am, lunch 1pm, snack 3pm, dinner 5.30, evening snack 7pm.

Also a word of warning over the ED team meal plans - they are almost always not enough food, the amount of calories needed for an underweight teen to gain weight is absolutely massive. It can be up to 5000 calories a day. The only way we could do this was using butter, cream, oil etc in every meal.

If you're not already I'd strongly recommend blind weighing from the start, when the reality of weight gain starts happening it can be really traumatic. I wish I had insisted on blind weighing for my dd from day 1.

As for telling people, it's a tricky one. Anorexia thrives in secrecy and there shouldn't be any shame in having a fairly common and very serious illness. That said if she doesn't want to tell her friends yet I wouldn't push it, you may want to start telling family and friends though as hopefully you will get support and understanding (that's not guaranteed unfortunately! Lots of us have had well meaning but crass conversations with loved ones 🙁)

Hi @mumandbambinos . That sounds like a positive start! Well done on picking up on it, and great that your DD is complying.

How are things Nan?

Hi @Girliefriendlikespuppies . DD was discharged from hospital on Monday, so we (all family) could attend four days of multi-family therapy in Chester. Massive distress on the way over - banging head in the car window, throwing food. (And I'm not keen motorway driving at the best of times!) Actually did okay on the first day - some quite revealing art therapy. But she wouldn't return the next day and took herself off into Liverpool where she did a huge amount of walking, so she had bradycardia again at her obs the next day. I think her team finally realized how poorly she is, and have made a referral to a Tier 4 Unit (Ancora House, if anyone knows it?). She's 3rd on the waiting list, but apparently it's only a four bed unit, so we might have to wait for a few months. She's got 2x weekly meetings at Alder Hey till then. Not going great at home - basically she's eating about half the meal plan. Just trying to keep everything calm here - DS has been amazing throughout this, but finally broke down on Wednesday, as the restricting and rows were starting again.

Oh bless you Nan I'm glad the team are finally realising how ill your dd is but it must be so traumatic for the whole family.

Sending you lots of love via the power of mn.

nan that sounds very tough but hopefully finally your DD can get the help she needs. What a guge amount your family have been through. Hugs to you all

@mumandbambinos I echo everything the others have said.
In terms of WFH I wouldn't get too fixated on an end point. It's bound to be higher than anyone can contemplate at the moment (and I am an advocate of over shooting the target set by CAMHS cos her behaviours were still anorexic at that point). Try to focus on each meal at a time. Like girlie said snacks need to be spaced from meals. An ED sufferer should not go v long without food (except at night) because the ED voice takes hold.
Also no negotiation..at all. I know its so vv tough but believe me the earlier you start the better. Its harder to row back later.
How old is your DD?
My DD' s sport was a huge incentive to get stronger for my DD. We never said weight gain we always said getting stronger. Little things like that can help.
And yes def blind weigh.

I echo this - I wish we'd blind weighed from the start as it became difficult to introduce it later on.

And also to concentrate on getting the food in and not to worry about the WFH yet. Everything was better when DD was getting a reasonable amount of food in, almost irrespective of her weight. In other words, if she was getting a good daily intake, her mood improved and her periods restarted. The minute she ate a bit less, it all went awry.

@NanFlanders I'm so sorry, this sounds really traumatic. I really hope she can get the help she needs and that you manage to look after yourself too.

Hi all just checking in.

Had another week of minimal gain but I took it much more in my stride. Psy said she wasn't worried but we've added an extra 150cal 'to get ahead of it' as the psy put it. We are so close to 90 W4H but it's JUST out of our grasp.

My question is, does the amount of calories keep having to go up? I kind of got the impression from the Psy that it does. She is on 2,500 cal which seemed impossible a month ago.

Weirdly she's eating quite well, when I came on here 7 weeks ago she was taking 1.5/2hours to eat her meals, they are now back to normal timings and she's eating everything (although asking again and again if it's 'the right amount'). Unfortunately if she misses the 'right' time to eat she has a meltdown.

We are still absolutely in a horrible gruelling place with the exercise addiction. It is relentless and so, so compulsive. Every day she looks at us and says 'You won't know if I'm tensing my muscles (etc) HELP ME'. We cant help, she's right we cant see. She is never, never alone even in the loo and we've got the nanny cam going, but still sneaks squats and burpees all the time.

Does this feel familiar to anyone?

@NanFlanders - this sounds so hard. Sending love and strength.

Hi whatho sounds like you are making great progress.
We had this with exercise. Only weight gain helps. So keep going!
The ridgitiy with timings etc is v common. Not coping with changes to routine is a classic ED symtpom.
Keep on increasing the cals and as weight goes on it will help the exercise issue. My DD had to be over 100% before we made headway. It took another year at that weight to lose nearly all the ED behaviours. But you should see small improvements before then.

Whatho sounds like you're doing so well, I agree with lots just keep pushing weight gain. I would really be trying to get as much in as possible at this point and personally I'd be aiming higher than 2500. If you want to give us an idea of the current meal plan I'm happy to tell you where I'd get extra calories in (I feel like I got this down to a fine art with dd!!)

Also there is such a thing as extinction burst which happens around 90% wfh, it's like the ED knows it's loosing the war so launches one last massive battle. For my dd is was around 95% wfh and suddenly dd was right back to being absolutely vile and monosyllabic, the self loathing ramped right back up etc.

It's obviously not guaranteed and I hope it doesn't happen but if you suddenly feel like you've gone backwards it might be that!!

The only thing that helped was pushing through it and getting some decent weight gains. Like lots dd, mine needed to go right over 100% wfh and it was tricky as dd still had a few growth spurts to contend with as well so the goal posts kept changing!!

My dd didn't have the exercise compulsion to the extent that yours has but she did develop ocd in other areas, she had to walk in certain ways, touching signs, randomly jumping at certain points in the day.

These behaviours have massively improved and naturally fallen away as the weight went on and the overall anxiety reduced. There's still the odd behaviour but I think it's more habit these days.

Thanks so much both. I am finding the exercise compassion unbearable and draining. It's worse than the early days of eating. She challenges all day then last night screamed in the shower and pulled her hair out because she hadn't 'done enough'.

Regarding the extinction burst, she doesn't know what her weight is. She's never known, which makes the whole thing even more surreal. So would there still be one? Because I can endure it if it's going to end, otherwise I am starting to get very wobbly.

@Girliefriendlikespuppies I would love suggestions about food. She's currently eating:
B: 65g porridge oats with 60ml cream, 120ml milk, spoon of sugar and spoon of honey (600ish calories?)
Snack: 250ml smoothie plus cookie (300 cal)
Lunch: bagel with butter and eggs, quiche, crisps, nuts, toastie plus creme brullee pudding (600 cal)
Snack: complan shake plus cookie (350 cal)
Supper: anything - sos casserole, curry, curry, mac and cheese , sos and mash (these are very tearful), lasagne (fine for some reason?!) plus 50g ice cream (700ish cal)

So probably more like 2600.

No evening snack as we finish eating at about 9.30pm. Perhaps we could pull supper forward and add evening drink as well but she is so tired and distressed she is vile from supper end to bed at 10.30-11.

I think EB is happening here too, and has been going on for a while. Dd is increasingly isolating herself. She spends around 3 hours a day in the bathroom showering and doing hair and make up to go nowhere. None of us can look at her and have to look away if we see her in the house. Poor dh spends as many evenings and weekends as he can with his parents or siblings to keep out of her way because he finds it so hard at home.

Dd is dependent on me for everything. If don't reply to messages instantly she gets angry and sends a barrage of messages saying I'm ignoring her because I dont care and then threatens to harm herself. I'm a slave to my phone and dealing with whatever she wants as quickly as possible. It's like an abusive relationship. I'm terrified that one day I'll miss a message and she'll harm herself and it'll be all my fault. I couldn't live with that.

This has all started as her weight has stared getting back to normal. She was a million times happier and still my loving and sweet dd at 76% wfh. It's heartbreaking.