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.

@Mumofellie your dd is doing incredibly well to be managing the “gold standard” of 3 meals and 3 snacks daily so the frequency of eating will not change it is likely the quantities or the types of food that will change.
DD has lots of calories in the form of full fat milk and 100% fruit juice so that might be something that is added.

The structure will be the same - 3 snacks and 3 meals. They will just gradually increase individual snacks or meals such an extra slice of toast for breakfast or increase the portion size for dinner. things like that. It depends what she has now but it tends to stay on the 3+3 structure for a while. Just changes to the individual components. Hope this makes sense.

That’s great thank u she’s dreading next weeks app already because she knows it’s gonna b increased I’m hoping to reassure her that it might just be a small increase as we’re both struggling to see where they can add anything but what u say makes sense thank u so much. We are only in week 3 since she was admitted to hospital so she is doing great so proud of her x

@Cantfindthewordsddstruggling thanks for that what do u mean by the gold standard I’ve never heard of this before. X

It just means it's the best treatment to manage 3+3.. A lot of our DC do not engage enough and will refuse to eat the 3+3 meal plan so its by no means a gjven that they follow 3+3. If your DD engages with treatment and follows the plan, that is great and gives her the best chance of weight recovery and ultimately recovery from the AN (the brain always the last thing to heal with anorexia if weight is recovered).

@Curlyhairedassasin thanks for that, yes she has stuck to it from the first day she was admitted to hospital and now she’s out she adamant she’s not going back in so is sticking to what they give her x

That's great, keep going!

@Mumofellie @Curlyhairedassasin explained it brilliantly. The regular eating is key to managing AN in particular.
The regular eating is key and then the professionals then look at increasing variety. For several months dd was having an identical breakfast and lunch. We are now rotating 4 different options with a variety of fruit.

Dd has grown so is going to get a revised weight range at her next appt. she’s already distressed about the prospect and I know that I’m going to be in the firing line. She has incredibly unrealistic ideas of where her natural weight should be. Does anyone’s else DC really struggle with this? The hospital don’t want to challenge this at the moment, but how can we have a meaningful recovery if she is still hell bent on a weight that is not right for her…..

@Cantfindthewordsddstruggling thanks for that, I will see what they change next week I’m thinking maybe her breakfast with only having one slice of toast with jam on as this is always the same and I feel not enough but she has always struggled with breakfast even when she was small and way before all of this so she will deffo struggle with that. Hope things go well for your daughter when they reassess it and it’s not too much for her

Your DD is doing so well @Mumofellie, my DS had his first assessment with the ED team the same week your DD did and unfortunately he’s not following the meal plan.

His weight has remained stable at 43.5kg these past two weeks and his obs flit between amber and red. He looks like he’s really struggling physically, can barely stand but insists he feels perfectly well. I feel quite anxious about it.

@WoodenTrain aww bless ya I was exactly same with anxiety when my DD was admitted to hospital I think being admitted made her realise in a way that she wasn’t well at all. Her blood pressure was low when she first went it but after a week and two days in hospital it got better. In 2 weeks she managed to put 3lb on (which may be slightly more as they did weigh her with coat on when she was first admitted). She is way lower in weight. I really hope your son is ok it’s not nice seeing them so weak and unwell is it. My daughters still tho is she can run a marathon and didn’t understand y she was admitted to hospital but then she has moments when she does know she’s ill and when she looked back at a pic she took the first day in hospital she showed me pic and said did I really look like that when I came in. So she does have moments when she thinks there’s nothing wrong and moments she knows she’s ill x

@WoodenTrain when was he last assessed? Bloods, ECG? if you are concerned, ring 111. I know he doesn't want to engage but there will be a point where he will be sectioned. And sorry if is so hard at your end and not improving at all.

Mumofellie welcome to the thread, I agree with the others that rather than squeezing in another snack they'll want to increase what she's already eating. Are you adding butter/double cream/fats to her food as this is the easiest way to get more in without them noticing.

For example my dd would have porridge for breakfast made with double cream which worked out around 800 calories (dd obviously had no idea re the double cream!)

I also added cream and butter to whatever she had for lunch and dinner as well as looked for opportunities to add in extra bread or calories any which way I could.

If you give me an idea of what she's currently eating I can help with how to increase its calorie value.

Wooden I'd be begging the team to section him tbh, he is so ill and unless he starts eating more his vital organs will start to fail. If you notice blue lips, coldness that he can't get rid off, cool/pale limbs or he mentions his heart feels funny ring 999. If he refuses food I'd take him to a&e or ring 999.

Can't blind weighing was our only way round this. Dd also had a totally unrealistic weight in mind and said she'd kill herself if she went over this. I responded with well you definitely can't know your weight then!

Now she's stable she recognises knowing her weight is harmful and actively avoids knowing it.

@Girliefriendlikespuppies thanks for your reply, I did add extra to her pizza lastnight and she didn’t know as she had a friend over so wasn’t looking over my shoulder. This is y I think I’d struggle to add anything extra. I have added more jam to her toast than she would have normally put on and she’s not mentioned anything. One day this week she had
breakfast 1 white toast with Jam
snack protein bar
dinner ham wrap with Cheetos (no salad creamas she doesn’t like it never has)
Pudding rolo cookie
snack 2 slices malt loaf with butter
tea pizza and homemade chips
pudding milkyway ice cream
supper 250ml vanilla milkshake

she’s 17 so hard to try add things without her knowing and she’s always there looking over my shoulder

@WoodenTrain I would also take to a&e and demand he is seen I had to do this with my DD the week before her assessment with CAMHs as she was so frail and really poorly. I demanded before they let her go that the crisis team came to see her which they eventually did but they just told us to wait until her assessment as it was 6 days away. Please please seek help x

He’s not had bloods or ECG for two weeks. The original plan was for bloods every 1-2 days to monitor for refeeding syndrome but bloods are an absolute no. Probably not critical though if he’s not actually eating enough for refeeding syndrome.

He’s been having someone come to the house to do BP and pulse every few days, and weight once a week.

The ED team have said they are considering a planned admission and we have an appointment to see one of the ED team doctors next week.

He’s looking a bit brighter this evening but really struggling mentally, he just told me he can’t do it (the meal plan) anymore. Not that he’s actually following it! He said he’s prepared to have breakfast and lunch but nothing more. He was convinced last night that I’m trying to get extra calories in him.

@WoodenTrain that is a long time. DD went from obs ok in a&e to being bluelighted to the HDU within 2 day as her body couldn't cope anymore. If he is struggling to walk and not coming with you to a&e, I would call 999. Things can tip so quickly.

Mumofellie it sounds like you're doing pretty well, I'd change the wrap to a sandwich or something on toast. Dd had scrambled eggs on toast, butter and double cream goes into scrambled eggs well. Soups another one you can add cream into. I found the thick sliced bread in Aldi was the best for calories.

If she likes puddings would she have milkshakes? I used to make dd an Oreo milkshake which was about 800 calories, half a packet of Oreos crushed up mixed with chocolate ice cream and double cream.

You need to keep your dd out of the kitchen and this should be strictly enforced. Dd knew I would have completely lost my shit if she ever came anywhere near the kitchen when I was preparing her food.

I think dd must be a bit scared respect me as she didn't push this too much after the first few weeks. If all else fails can you put a lock on the kitchen door?!

@Mumofellie completely agree with this about keeping DD out of the kitchen. She should have absolutely no involvement in what or when she eats. At the start of recovery you have absolute control over everything food and exercise related.

We were instructed to make sure a snack took no longer than 15 mins and a meal was 30 mins. If they don’t finish everything in this time it’s a full meal replacement nutritional drink(not the ones people use for weight loss as a meal substitute) we bought ensure plus. We were over an hour for breakfast and over 30 mins for a snack at one point. As the person recovers they can begin to have input in what they consume, eg deciding what to have as a snack while still being supervised.

@Mumofellie the only food/drink we would not give DD was anything that she wouldn’t eat pre ED. Not the things that were cut out in the process of her developing AN. It’s amazing what they convince themselves they don’t like. DD claims she has never liked cake!

@Cantfindthewordsddstruggling @Girliefriendlikespuppies thanks for your replies I will take on board keeping her out of the kitchen and see how that goes. She has been having an input on snacks and meals as I’d rather her actually eat something she wants to eat so I know she will eat it, she doesn’t have a say in the portion control now as she knows this has to be the same as mine. She has been challenging herself with her fear foods and since being out of hospital has had about 6-7 fear foods and actually realised she likes them

@Cantfindthewordsddstruggling ye know what u mean she always moans about mash but never moaned before so give her it exactly how we used to always have it. She also doesn’t take long to eat it’s never over 30 mins for dinners and breakfast this morning was done within 7 mins

Mash potato is another good one to stick cream and butter in, I make dd a fishpie which has loads of butter, cheese and cream in between the white sauce and mashed potato on top.

@Girliefriendlikespuppies this is where I struggle as she likes mash so it falls apart rather than creamy and sticks together

@WoodenTrain I keep thinking about you and your poor son. You said he is struggling to stand - if he faints, do get him to A&E - they took my DD really seriously when she fainted. All the best xxx

Thanks @NanFlanders, he seems a little brighter today but his food intake has much reduced - only 150 calories in the last 24hrs. The ED team called this afternoon and just said to keep a close eye on him and they’ll call again tomorrow.