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

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

@sammyspoon so very pleased you’ve been seen. Yes, it’s dull for sure! Everything is focused around food which is so difficult. Be careful about the Easter chocolate and what snack it replaces. Some Easter choc is very thin. However, a willingness to have chocolate is great. That’s my DDs saving - I put 33g bars of cadburys in her lunch box and she often has two. Doesn’t eat all her lunch pasta but has the choc. I melt it for a hot choc, which she has with a pain au chocolate for bfast and melt more for dipping strawbs that she’ll have for an eve snack. I find it impossible to do 3+3 as we’ve never done puddings. The choc is helpful here. She’s never been 80% wfh - always in the 70’s but I think mild ARFID rather than anorexia. Her choices are not typical AN at all. We are currently on holiday and for dinner last night she chose padron peppers, but had a few pieces of battered calamari, a small portion of chicken paella then 5 churros with a choc dip. Her portions are small albeit her choices are calorific. Bfast was pain a chocolate and peach iced tea; lunch was a few pieces of sushi, a couple of spoons of curries and rice & a few pieces of fruit.

Although discharged from ED clinic I do worry about her. She’s over 500 for sure but given she does over 10 hrs a week exercise she should be eating huge amounts!
Do you all work out the calories per day? And how? MFP?

My DD is similar with food choices- she's generally ok with processed food, chocolate etc but it's the calories she focuses on. I think AN can still be very present / severe even without particular 'fear foods', as seen in my DD.

@NotDonna
I’m new here. I have no idea if people count calories or not and I have only counted calories approximately to give me an idea where dd is. She’s only eating a very narrow range of foods atm. I buy food online and with anything I look to buy to tempt dd to eat, I check the calorie content / nutritional values to decide whether or not it’s worth pursuing. Where there’s a choice of houmous for example, I’m checking the calorie content of each and buying the highest per 100g. It may only make a few calories difference but every little addition helps, a bit more butter on the roasted vegetables and so forth. The added bonus is she prefers the houmous higher in calories and will eat more of it…

My daughter's fears seem to be around where and what she eats. She seems ok with food made at home. So the meal plan specified muller yoghurt which she was unhappy with and we substituted with 10% fat yoghurt plus homemade coulis. She knows it's higher calories but feels it's 'better'

Yes @lyriccat sorry! Hope I didn’t offend. I’m a bit of an imposter here as DD was discharged from the ED clinic 2yrs ago after a 2 week assessment & doesn’t have AN despite being 64% wfh at the time. It’s still a struggle to get enough calories down her and she bounces around 75-80% wfh over the last 2 years. I don’t really belong in the ARFID group either as she has a much wider range of foods than most of them. I obviously don’t understand some of your AN challenges as I’ve a very different experience with very little pushback from her. So I don’t really belong here or there but here is so very very helpful as you all keep me focussed on that slippery slope and that I’m right to keep pushing and adding etc. Luckily I can keep an eye on her weight, height and obs as I need to report them monthly as she has adhd meds.

Don't apologise, I'm sorry to hear about your experience, it sounds so difficult managing without a diagnosis or strong sense of direction/what's 'right'. Although you're right in thinking any kind of high calorie food and probably parts of the FBT approach would still be beneficial for your DD at that wfh, AN or not.

@lyriccat yes definitely! I’m lucky that she likes typical ‘unhealthy’ food (which we all know there’s no such thing!) such as chicken nuggets, kievs, pizzas, pasta, breads, etc. Really dislikes salads and veggies. The more beige the better. She’s not into puddings so chocolate is our saviour. She can taste anything I sneakily add and will discard if doesn’t match how she’s imagined it’ll taste. I’ve learnt that I have to be honest and say I’ve put cream / ground almonds etc in it as otherwise she’ll never have that foodstuff again. Given she’s a narrow ‘likes’ list I can not afford to have foods discarded from that list because I’ve sneaked something in. People on FB used to say she won’t notice a spoon of powdered milk in a smoothie - she bloody does!! 🙄 I think this taste texture thing is more ARFID but she’s not bothered about packaging. Thank heavens! So we’ve certainly got it easier than most.

@NotDonna My DD is similar with textures and tastes... a couple of years ago I tried adding cream into her cereal milk and she knew instantly. Of course with AN this meant she wouldn't let me prepare food for her again 🙄 but she definitely notices even different brands of the same food. She doesn't have ARFID but is autistic so it must be a sensory thing for her.

Ahhh yes I think neurodiverse people are a lot more sensitive to tastes and textures.

My DS is autistic too but doesn’t seem to have any fear foods as such. He has quite a wide ranging palette he’s just never had much interest in food and only eats small quantities. He has always been very slim. Since he started loosing weight I have noticed a difference in what he picks to eat though for example he will choose a grilled chicken wrap at McDonald’s rather than his usual quarter pounder with cheese. A few weeks ago he agreed to Domino’s but I noticed he picked the lowest calorie pizza on the menu. At other times he will eat something high calorie and I think to myself ooh that’s good but then later he won’t eat for a few meals to ‘balance it out’ as he puts it.

We didn’t go to A&E in the end. I told him I would have to take him and he agreed to eat more food. I said 3x meals and 3x snacks, he said he can’t but would agree to 2x snacks and 2x meals. He did okay with the two meals, but only had one snack and some Easter chocolate. Today though he’s back to so far only eating one crumpet no butter and half a glass of water.

I wanted to weigh him yesterday as I’ve been weighing every Monday and he said he didn’t need weighing he knew how much he weighed - 45kg. I made him get on anyway and he was 44.1kg he angrily said he was 45kg and walked off.

We got an appointment through from the eating disorders team today for Friday. I’m just hoping now that we might get proper help and a plan to move forward.

So pleased you have an appt for Friday as he’s not sticking to your rules of 3+3 whatsoever, is he? Not even sticking to his own 2+2 rule! The ‘balancing out’ after eating a reasonable portion would worry me too. Watch the weighing too as some cheat with heavy clothing, items in pockets etc.
Is he preparing the foods or are you? I know some ppl suggest that they don’t do any prep and to not even be in the kitchen. Some use this to hide extra calories (adding cream, butter, ground almonds etc).

Hi all. Just wanted to check in ( I was on thread 11). Things are at a plateau really with DD. Her main therapist has been off for a couple of weeks and then the bank holiday. We had a disastrous appointment with the FBT counsellor who managed to reveal some numbers to her so she was able to work out her weight. (She normally blind weighs and we don't tend to get the figures unless the main therapist secretly emails them to us.) Anyway, this set us back a little bit and DD had a rough week or so. She is still very determined to fight but every day is a battle for her. She's worn out. I frequently end up in her bed or holding her while she sobs.

Just wanted to check in for a bit of solidarity really. I just listened to Radio 2 talking about calories on restaurant menus and there were people calling in who had AN for years (17 was one I think) and I'm so upset because even though I know this can be in someone's mind forever, to think of someone battling it for nearly two decades - to think of my daughter battling it for that long when it's already stealing her teenage years.

I can also see that it's having a really negative affect on my both my sons. One ate every last bit of his Easter Eggs and then threw up, then aggressively demanded we buy him a load of sweets to compensate. The younger one seems really sad. My DH is struggling.

Just feel like the eye of the storm has passed but we're still circling it. This shit is bloody hard.

SicilianOrange Same here. The impact on the rest of the family is really starting to manifest. Siblings are struggling and we are struggling. Through various support groups I have met mums of children who are now in their 30s still struggling with AN and the thought chills me. I think we will have to get individual therapy but I can’t bear having to go through more therapy!

It's relentless isn't it. I'm in therapy separate from the CAMHS team but sometimes you just don't want to rake over it all again. Exhausting.

@NotDonna he agreed to me preparing his evening meal if he could prepare his lunch. But he’s preparing so little for lunch it’s impossible to get enough calories into his dinner. I told him the other day he needed an evening snack because his dinner had been only 500 calories, he refused and said that’s my fault if I’ve not given him enough calories in his dinner.

I’m finding it really difficult because he wants to eat what I’m eating for dinner, except I’m obese and trying to loose weight! I also need to watch what his brother eats, he is the exact opposite and is on the 99th percentile for weight!! He’s also autistic and basically only wants to eat macaroni cheese and sweets.

Today he’s not had anything but a can of Pepsi and he’s said he’s only going to eat vegetables in a wrap for dinner, it’s about 300 calories. I’ve said that’s not enough and he needs a pudding. He said he will ‘try’ but he really just wants vegetables.

So hard! I’d let him have as much macaroni cheese as he wants. You can make it with cream and cheese rather than a white sauce. Also mild cheese then you can add more! And Pepsi on the proviso it’s not a diet version.
So so difficult if you’re obese but is it possible that takes a back seat at the moment. I know that’s really difficult! I don’t have anything ‘diet’ or ‘low fat’ or ‘reduced fat’ etc in the fridge, freezer or cupboards. It’s full fat milk, double cream and full fat yoghurts, ice creams etc. And I have a huge box of chocolate snacks in the larder. She can’t really choose low calorie options. I know it’s different (I’m overweight rather than obese & she’s more ARFID than AN) but I’m just wondering if this could be done? Sending you strength as this bloody hard!

Ah DS1 won’t eat macaroni cheese it’s his brother DS3 who is 99th percentile for weight that only wants mac and cheese. I wish DS would eat it.

I had switched to skimmed milk because DS3 pretty much only drinks milk. Then I bought both whole and skimmed with the idea of DS1 having the whole milk and DS3 having the skimmed but that made it super obvious to DS1 I was trying to get extra calories in him. Now I’m just buying whole milk.

Well he’s eaten his 300 calorie vegetable wrap and didn’t even try to eat pudding, became aggressive when I tried to push it.

Wooden I think you'll just have to take the bill by the horns and tell your dd that you are now in control of what he eats.

No more vegetable wraps, no more him preparing lunch and no more refusing dinner.

You prepare all the meals and snacks.

He will kick off, he might become aggressive, he might try and run away.

You just have to be consistent and not back down.

Pps have had kids put their feet through oven doors and a car window screen when getting them to eat. It is very literally a battle. My own dd used to head bang, tie ligatures around her wrists, run out of the house...

As he is autistic get the autism to work to your advantage, does he like routine? Does he like rules? My dd does so once I explained the rules to her she reluctantly accepted them.

It is hard but he is not well enough to make any rational decisions about what he needs to do to recover. You have to make those decisions for him.

@WoodenTrain ah damn - I was quite hopeful re the Mac cheese & Pepsi! How old is he? Do you have a partner? If so are they supporting you? I think @Girliefriendlikespuppies is absolutely correct (and has experience). His ED is in control atm and making deals to keep him ill.

@WoodenTrain @NotDonna It is so hard to protect the rest of the family's health and get a DC with AN to eat at the same time. We put everything else on the backburner to serve full-day meals with desserts and snacks. DH's diabetes spiralled and DS and I have both gained loads of weight - I'm now obese with extremely high cholesterol. I've been trying to address this now DD is doing better, but DD just pounces on any low-cal substitutions for us - DH and I had cauliflower rice, so she would only have that. And I don't know what to do about DS.

absolute meltdown central after DD’s weigh in today. She’s the heaviest she’s ever been by a significant amount and only a couple of items of clothes still fit her. I didn’t realise that the few pieces of clothes that still fit her were in the wash which she needed today and all hell has broke loose. This was the final straw which unleashed the meltdown.
people talk about running on empty well due to a lack of sleep and all the stress of her eating disorder/ mental health, I am running on fumes. I’ve got nothing left in the tank and she’s got friends coming over tomorrow for a sleepover. I don’t know how I can get through the coming days.

Hey @Cantfindthewordsddstruggling, gosh I'm feeling you. I've absolutely been there with the clothes, I've been considering replacing some of DD's clothes and sewing in the labels from her old clothes in fact I bought her some new knickers recently and cut every label out of them before I gave them to her.

It's so so hard when you're running on fumes. This is the hardest thing any of us have probably had to do, it is utterly draining, terrifying, exhausting. I'm off work this week and have noticed just how much I've been sleeping - I think I'm catching up. Can you find space for yourself today? But even if you can't, I just wanted to remind you that you're doing such a great job, you are patient, kind and loving with your dd, despite how hard ed makes it. Sending you love x

Can't I've also been there with the clothes as well 😢 I was fairly open with dd and said in a matter of fact way 'recovering means you will go up a clothes size or two, this is normal and healthy. All teenagers should be going up clothes sizes'

I bought dd the size up clothes and gradually put the smaller clothes in charity shop bags.

That said if you feel it would be easier then go with greys idea of just cut the size labels out.

Does she still need to be weighed now?

@Cantfindthewordsddstruggling Sorry to hear that. Even without the struggle with clothes being too small (yet), my DD has had meltdowns over deciding what to wear, complaining everything makes her look 'huge', throwing clothes out then changing her mind etc. I've ended up keeping the bags of clothes she gives me in the attic without her knowing rather than waste them and have to buy more. I agree with the idea of cutting out labels, sizing can be very unhelpful. But your DD should also know that her weight is bound to change in recovery, especially as she should be growing at her age as well. Easier to type than say, I know.

That sounds really hard with the clothes. DS only wears one t-shirt and one pair of joggers. He has three identical sets but still only wears one of them. I guess the ‘worn’ set feel different.

I know you are right @Girliefriendlikespuppies I just don’t know how to make him eat. His autistic strength seems to be the ability to out wait anything. He’s demand avoidant so I’ve tried being low demand and just placing food near him in the hopes that he eats it but it’s didn’t work. Equally pushing him to eat seems to have resulted in him eating less.

Spent ages making butter chicken for dinner from scratch to cram in as many calories as possible and he wouldn’t even try a mouthful. He did eat some naan bread but that’s it.

In moments when he’s being more reasonable he says he wants help to not feel the way he does but when I tell him the food is the medicine he just gets angry. I fear I am pinning too much hope on seeing the eating disorder team tomorrow. Does anyone know what I should expect from the assessment? The letter says we will be there 2.5 hours which is much longer than I imagined.