Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Just seen that Nikki Graham has died, it's really upset me 😢 such a bloody God awful illness.

Yes, I saw that about Nikki Graham - very sad.

Thanks girlie. I feel terrible asking this because I am aware DS' intake is significantly more than some on here are struggling with. DS3 has a medical condition that requires a high calorie/fat/protein diet, and exercise is encouraged, not to be limited.

Yesterday
B - 2 bacon, 2 sausages, 2 eggs, mushrooms, cheesy beans (added olive oil), 2 toast and butter. Orange juice.

S - croissant with butter, lucozade and calogen extra shot.

L - cheesy (double cream and mascarpone) pasta with smoked salmon, broccoli and green beans.
Millionaires shortbread.

S - crisps, calogen extra shot. (5C)

D - chicken and vegetable skewer - chicken, courgette, pepper, red onion, tomatoes. New potatoes (added butter and olive oil) with white wine sauce (he left the sauce).
Cake and cream

S - Hot chocolate (made with jersey milk, double cream, skimmed milk powder) with whipped cream and marshmallows.

Overnight feed

45mins active physio x2
1hr10 bike ride
1hr15 tennis
Trampoline 20mins

Today
B - 2 cheesy scrambled eggs (double cream) on 2 buttered toast with cheesy beans (olive oil). Orange juice. Banana.

S - croissant with butter, lucozade and calogen extra shot.

L - Chicken and vegetable (courgette, pepper, spinach, red onion) creamy (double cream) tomato pasta with parmesan.
Millionaires shortbread.

S - 1/3 Easter egg, calogen extra shot.

D - Pizza. 1 slice garlic bread.
Cake, strawberries and ice cream

S - Hot chocolate (made with jersey milk, double cream, skimmed milk powder) with whipped cream and marshmallows.

Overnight feed

45mins active physio x2
1hr15 bike ride
1hr football
20mins tennis
Trampoline 30mins

That was longer than I intended, sorry!

Ignore the (5C) next to yesterday's afternoon snack. I C&P from DS' food diary on my phone and thought I had deleted it, it relates to medication.

EDNC that does sound loads so I'm not sure you would be able to get much more in. Will he have pudding after dinner and a snack in the evening? That's on dds plan not that she follows it 🙄

The Nikki Graham news has really got to me too. Finding it hard to switch off from it all tonight.

@EDNC gosh that's a tall order having to increase that level of intake even further. Maybe a cereal bar or smthg sim with his eve hot choc? If he's ok with cakey type of puds, cld you introduce a higher cal brioche bread & butter pud dessert? I make one that's super high cal, uses brioche, white choc, dble crm, blue milk, sug, eggs, raspberries ( opt) ....DD's weight always does well on weeks I'm able to give her that a few times. Happy to share if you like. One other thought -my nephew has CF and also needs a high fat/carb diet..think my sister adds MCT oil to certain things where poss, its v high cal and almost tasteless. I've not experimented with it greatly in cooked meals but have prev added small amts to nutritional milkshake drinks.

@Lottsbiffandsmudge yes, how weird, v sim days! It must be extra hard for you dealing wirh your DDs perfectionism in footie if she plays at a high level. Your coach sou ds helpful tho - hope the chat with him helps. My DD isn't v competitive about it thank god because she only plays at quite a low level- that must be harder to deal with. She was more p'ed off about the reduced exercise time than anything else I think hence the knee jerk "not having my snack" threats afterwards. I just long for the day when DD can eat freely without the AN making her "pay the price" with exercise..

I think you have wiggle room in the afternoon snack, @EDNC. Could you add a chocolate bar to the crisps on day 1, and add crisps to day 2's snack?

Otherwise, how much butter do you put on the toast at breakfast? I aim for 20g over 2 slices of bread, or more. Would he drink milk with added double cream? A 150ml glass of ½ whole milk, ½ double cream is 317 calories. If he could have that with each snack, or with his meals, you could add 1000 calories per day.

I don't know how many calories breakfast is, but when I make DD1 scotch pancakes (4oz flour, 1 duck egg, 75ml double cream, 75ml whole milk, 1oz sugar) and add butter, and either golden syrup or Nutella, I can get 1200 calories into her just with that.

Alternatively, could you swap out the crisps for something like a Gu cheesecake? They're small but are around 300-400 calories.

Thanks for all your thoughts.

DS does have pudding after dinner - cake with cream yesterday and cake with strawberries and ice cream today. He won't eat brioche Roolet he doesn't like the texture, but the cakes are home made with additional calories and fat.

Evening snack is a good shout Girlie. Recently he's been having hot chocolate instead. It needs to be in additional to something else, I think.

Lougle afternoon snack on both days was crisps, 1/2 Easter egg and a calogen extra shot, but he didn't finish the snack on either day. That's something to focus on. Crisps are good because DS needs more salt than normal, but we can add something in that is higher calorie than chocolate. I'll investigate cheesecakes.

We use 30g of butter for 2 slices of toast. Our breakfasts are similar calories. DS won't eat scotch pancakes either - again it is the texture. He usually drinks jersey milk with added double cream at supper, but swapping to hot chocolates recently has dropped that.

I think we need to focus on afternoon snack and supper.

Roolet DS1 has liquigen, which is part MCT oil, added to his neocate overnight feed. Calogen extra shots are similar in that they are also fat emulsions like MCT oil. Brilliant for weight gain, nightmare if you spill it or said child vomits.

Going at it from a different angle, @EDNC, could you increase the concentration of his Neocate so that he gets more calories overnight? I don't know what you already use, but their concentration charts go up to 1.5 cals/ml.

Will he eat avocado or nuts?

ednc can you increase the night feeds to get more calories in? The bulk of Ds calories now come overnight

I know it adds a bit of volume @ednc but could you provide a muffin alongside afternoon snack or supper - DD and I are planning on making a tripartite batch today (apple, blueberry and a savoury ham/cheese)

Someone on the thread also swears by duck eggs so could they be substituted for regular eggs to boost calorific content?

If he will eat nuts -how about a satay sauce for the chicken skewers?

Sorry lougle, different DC. DS1 has neocate & liquigen overnight. I was just mentioning the MCT fat emulsion. DS3 has calogen extra shots during the day and nutrison energy (1.5kcal/ml) overnight. There is a nutrison concentrate, I'm not sure if would be used for a child, worth asking.

Sirzy increasing volume is a possibility, would have to increase the rate rather than hang time, as need to be finished by 3am to give enough time prior to physio. I will add it to my list of possibilities to mention.

Did DS having most of his intake for feeds occur gradually? Unless acutely unwell DS' team aim for oral intake to be more than overnight feeds. DS1&3 would be quite happy never to eat again.

DS3 will eat avocado. He's allergic to tree nuts, peanuts and some seeds which limits things.

I shouldn't pause mid post. X post.

I think you are right myrtle. DS3 needs encouraging to finish afternoon snack and something needs adding to supper. I will try duck eggs too.

Ds intake orally was pretty much non existent and getting worse, initially we aimed for tube during the day only but couldn’t get enough in for him to gain weight that way. He now gets 1800 calories a day via tube mainly at night and then anything else is a bonus.

Not having a great day here, dd just made me cry on a walk 😢 I just find the selfishness of the illness really hard to deal with. I sometimes think dd wouldn't care if I was hit by a bus tomorrow as long as the ED had its needs met 😕

We're meant to be meeting my two best friends and their young children on the beach tomorrow and all I can think is how is the bastard ED going to ruin the day.

@Girliefriendlikespuppies sorry to hear that you are having a bad day... I don't know what happened but all I can say is that it would have 100% been the ED bullying your DD and you taking the brunt of it (e.g. her articulating the bullying in her head). It doesn't mean that she doesn't love you. Try to stay strong.

girlie it is so hard isn't it? Rational you knows it is the ED bullying DD as havehope says but in the moment it is so hard not to take it personally. No matter how rational you can be, hearing stuff coming out of your child's mouth really turns the knife... Take a moment, howl into the wind or have a sob then keep going. You know you will get your DD back

@Girliefriendlikespuppies I hear you. DD1 had her first meal out of the house since ED was diagnosed today. I thought she'd eat better because she was at my parents and Dad's roasts are usually a favourite. But no. She really struggled. It's a bit crushing.

Thanks lovelies I just want my dd back 😕 I don't like this version! Today's fall out was because I said we didn't have time to do the walk she wanted to do, she stormed off with the dog leaving me trying to catch up. She wouldn't speak to me or look at me, basically treated me as if I didn't exist.

What upset me was that I really had done nothing wrong, I hadn't said she couldn't go on a walk I just said it would have to be a more local one. That obviously upset the ED.

I was trying to catch her up and started crying but she still didn't care 😢 she never used to be selfish at all, she always cared a lot about the people she loved (me, nanny, grandad and her cousins) but she appears completely disinterested now.

I'm sure she's lost weight which would explain why mentally we're going backwards again.

I'm just so fed up with it, this summer will be shit unless she starts to improve. Last summer was awful as well thanks to the ED 😔

Sirzy Does DS gain on 1800?

Girlie Such things are painful to hear. Keep reminding yourself this isn't the real DD. She is taking her frustration out on you because a) DD knows you love her unconditionally and regardless of how much she pushes you away you will always be there, and b) you are challenging the ED.

He was when he was having about 300 calories orally but the oral intake is very erratic at the moment so it’s stagnating a bit at the moment

Hear you too @Girliefriendlikespuppies. ED can be utterly vile and I defy any parent not to feel like they've been hit by a freight train every time callous, ED fuelled obscenities come out of their children's mouths. It's so damned hard not to feel wounded and not to react to it. It hurts even after the umpteenth time.
I hope at least you've managed to move on from earlier and she's not giving you such a hard time this eve.
If it's any consolation, must be smthg in the air tiday. DD and I also had a big scene this pm. Just an accumulation of issues throughout the day, starting at b/fast when she crumbled both weetabix up and threw them everywhere. (she then expected to go to riding half an hour later as though nothing had happened..). Then repeated resistance to sitting down. As you all are I'm sure, I'm just so tired of the constant battles & nagging every step of the way and feeling like I'm the only one really fighting 24/7 to help her. DH is in cloud cuckoo land half the time and DD is totally reliant on me - won't allow him in to her ED world which can be convenient. I badly needed space this pm but DD sank into hysterics as I went to go out the front door, because she hates me going out alone & has massive anxiety about it. I felt suffocated, became angry and said things I regret. We both then ended up in tears and and left me feeling like the worst mum out there for adding to her issues and now worrying that I'll set her back. Does this never ease up? Certainly doesn't feel like it right now. Sorry for rant.

On a different note - DD has had third fsirky heavy nose bleed in about 4 days. Looks like someone's been murdered in the bathroom afterwards. These started happenning whilst in IP not long after starting sertraline. No prior history of bleeds. Anyone else had this issue with it? Will mention it to psych nxt wk. Hoping it can't be that because I'd be v loathe to have to alter her meds at this stage.

@Roolet12 it can be a side effect, sorry. If they are more than 10 minutes long (i.e. can't stop them bleeding) you need to call 111.

@Lougle i suspected they might be. Just had another smalker one after further upset. Today really not a goid day.