Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Also, I have had much better help from here than from dd's therapist. Particularly the emotional support that's enabled me to be stronger for dd. Camhs are very lacking in supporting carers. But I agree that it's not one size fits all and you have to think very carefully about any advice you are given here and on other forums as it might not be right for your situation.

I would second the approach as to do what you think is best. DD’s therapist was worried when she got to 106% wfh that DD may carry on gaining and gaining and gaining, so reduced the snack / dessert requirements. DH supported this, I was sceptical. DD is now losing weight that she wouldn’t of if the therapist had not intervened - adolescents need lots of calories anyway, and as DD began to do more activities then she of course needs more calories. Now I am in the position of having to reintroduce food and times that never should have been removed in the first place.

Family Based Treatment is based on you knowing your child best - perhaps remind the therapist that (ours had a messiah complex).

Don’t know why but it makes me feel like shit
been out for a night out , why do ppl say it’s a phase. Like it’s a choice foie my child to have anorexia
they have no f in clue. And to compare it to anxiety. It makes me sad and cross is no one going to understand how she or we feel. It’s not a phase she didn’t chose this
it’s not something she will grow out of. F off it makes me so sad even friends don’t understand

Well, I have found several friends and colleagues at work understanding it too well.
.... because they also have children with ED. Scary how common it is.

@Whippetlovely Sorry you are feeling down. I try to give people the benefit of doubt. Before DD became ill, I had no idea how horrendous this illness really is. I think people are trying to be reassuring sometimes but it comes across wrong. Having said that, I had a fallout with a friend over DD. I called her when DD was in hospital in the HDU and she said I am overly dramatic. Friend said was a picky eater who didn't eat meat in her teens and she turned out ok. I have gone NC since as it was even too much for me. Take a deep breath. I stopped sharing all the AN crap with people who have no idea about it as I cannot do with the 'have you tried sitting and eating with her and encouraging her to finish her meal' nonsense and tend to offload here where there are people who understand.

Hello, can I join please? I’ve not yet read the whole thread but will do. DD3 (14) has ADHD and at her medication review yesterday they were very concerned regarding her low BP and low weight and said her wfh is 78%. It’s a private adhd clinic. Her eating probably isn’t disordered as such but she is fussy. Where can I find ideas for high calorie foods that are small portions as her appetite isn’t great. I don’t want this low weight spiralling into an ED. Huge thanks!

@NotDonna Do you cook yourself? If so, add butter, cream etc to sauces to make them heavy. there are also shakes which the GP can prescribe shakes (e.g. ensure and ensure compact). Could you make your own smoothies? Would your DD accept energy bars as snack? loads available with 250 cals per bar. Make sure everything is full fat (milk, yogurt, cheese etc). Those with an AN usually have an 3 + 3 meal plan, i.e. three meals (breakfast, lunch and dinner plus 3 snacks - mid morning and mid afternoon snack plus supper). That means at least 6 meals per day.

@NotDonna I agree with curly here. Dairy fats are the way to go along with red meat. Get full fat greek yog. Add double cream to mashed potato, any creamy pasta sauces, smoothies (but after blended or it goes macDs milkshake thick!), milkshakes, hot chocolate, porridge, whatever she likes!
Nuts are a good source of dense calories. Or nut butters. Dried fruit also good. We used nut, raisin and choc mixes for snacks.
Grate ff cheese on pasta stuff.
Basically shoe horn as many extra csls into existing food!
Flapjacks with nuts/ choc chips and dried fruit in are excellent sources of cals (make mine with butter, oats, golden syrup and demerara sugar and add lots of extras). You can also half dip in choc and allow to dry for extra cals.

@Whippetlovely I hear you. Well meaning friends can be clueless.
I try to think about how ignorant I was before I lived this. But yes sometimes it's just not worth bothering having the conversation.

Hi NotDonna

As curly said, immediately swap to full fat everything and squash for 100% fruit juice. If you can let us know the meals and snacks your dd eats happily, we could give you some ideas to enrich them.

Yes to nut butter, I've bought lots if different ones from H&B.
DC puts a spoon full on porridge

Thank you all for such speedy responses.

@Curlyhairedassasin @BagpussSaggyOldClothCat @Lottsbiffandsmudge
Yes I cook from scratch, use butter to cook most things and everything is full fat. She doesn’t eat yoghurt or drink much milk but I can encourage that with hot/cold chocolate as she’s not keen on plain milk. I need to make an appt with the GP as they won’t be aware. But do the ensures taste ok? Yes I could do smoothies - what are you putting in them? Yes she’d accept energy bars as snack but need to be nut free for school - which ones are nut free & high cal please? Think she’d struggle with 6 meals a day but we can definitely work towards that and increase snacks.
We only have full fat yoghurt and full fat milk as I’m a firm believer of how important fats are! She doesn’t like nuts and they’re not allowed at school. Plus she’s got braces so popcorn is now not allowed either. She’s VERY sensory and can taste a texture change which means she won’t eat it. And can make making things like flapjacks tricky as it’s never exactly the same. Shop bought is better. She also likes something one minute then rapidly goes off it - Tesco flapjacks being one. She’s keen to gain weight so I’m doubly keen to pounce on this whilst she’s compliant!!
She likes pasta, rice, bread, all carbs actually - just had naan bread for bfast! Likes strawberries and mangoes and avocado. Doesn’t like dried fruit, raisins etc. Not keen on salad stuff (yippee). Likes chicken, red meat and some fish. But is keen on beige foods! And has a tiny appetite so portions are minuscule.
100% fruit juice is a great idea rather than cordial. She’ll drink full fat coke, appletiser. There’s never been any diet products in house.
Today she’s just had elastics attached to the braces so I’m hoping this won’t put her off eating!

Hi Donna sorry I'm at work so haven't read your post properly but wanted to check if your dds on adhd meds? The side effects can have a massive impact on appetite so she may need them reviewing or changing.

78% wfh is very low so you're right to be concerned, does she exercise? I'd knock that on the head until she's a better weight.

NotDonna

Most cereal bars are marketed as being low cal so its a case of just looking through them at the shop and avoiding any under 100 cals (that's most the them sadly). The Quaker to go golden syrup bars are quite little for around 200 cals each. 2 of those would be good. My dd likes the Belvita milk breakfast bars which again are around 200 cals. They're fairly plain with no nuts. There are some Nature Valley plain ones that are very like flap jacks.

You can stir olive oil into cooked pasta and rice. Start off with a little and build up. A spray bottle with olive oil in is handy and you can spray some on naan bread etc and it soaks in.

Add double cream to her hot choc. Again start off with a little bit.

Add a splash of double cream to her yogurt.

You can stir unsalted butter into pasta sauces, curry sauces etc and it blends in well. I separate some off for dd as I definitely don't need the butter. Add ground almonds to curries.

If she likes cheese with pasta and sauce, bolognese etc put some on the pasta before you put the sauce on, then more cheese on top.

If she has cereal for breakfast you can mix double cream with her milk.

Very slowly increase portion amounts.

She might not be strictly in ED territory but if she shows any signs of wanting to control what she eats, seems to be preoccupied with her looks, starts to refuse previously liked foods because they may be 'bad' such a pizza or increasing exercise then that could be a sign she's struggling with thoughts in her head, so that's just something to look out for.

I can't help with the brace issue. I hope it's not too uncomfortable for her x

@NotDonna - just popping in, have you looked up some guidance for ARFID? Although your DD might not quite meet the criteria, it may help with some suggestions. I would also say about introducing puddings - things like panna cotta / posset etc are very calorie dense if they are something that she would eat. If she likes pasta, then creamy sauces are the way to go - plus cooking rice to go with curries in coconut milk.

@Girliefriendlikespuppies agh sorry yes I should have mentioned this. she’s on Guanficine because the methylphenidate seriously killed her appetite and literally ate a teeny tiny dinner at bedtime. That was a good 18 months ago. Her appetite is much improved but still not where it shoukd be. She’s full very easily, prefers small portions and quite fussy. But she will eat high calorie foods and prefers ‘junk’ - loves dominos, Taco Bell, McDonald’s etc - don’t live close to those and cook most things from scratch. She’s not yet showing any AN signs. But I’m watching closely as know from friends how quickly it can spiral.

@BagpussSaggyOldClothCat thanks, lots of helpful ideas here. I think I’ll need to go VERY slowly adding in cream etc as she can taste blinking everything- seriously! She’d make an amazing chef as Her taste buds are so refined, picks out every ingredient and blooming difference!
Yes I’ve looked at ARFID a few times @Havehope21 and there’s definitely similarities although nowhere near as affected as some kids! Most of the advice is about increasing the variety, which is a constant. Panncotta and posset are great ideas. She liked stewed apples with cream - when I stew the cooking apple I use so much butter and sugar!! But she’s gone off this recently, so do need to find more puds.

@NotDonna chocolate pots made with double cream are good - as is bread and butter pudding... but then it depends on what textures she prefers. Also opt for things like mash made with double cream (probably been said before) and anything with cheese.

Thanks I’ve just found a great choc mousse recipe which I think she’ll enjoy. I always add cream and butter to mash. I’m thinking summer hasn’t been good for packing in the butter and cream but if I do a shake every day that shoukd help plus push the puds and another snack. She loves chocolate and usually has a choc bar every day - a small 33.5g one but it’s 179 cals. Need to get the snacks higher. And meals!

@NotDonna no idea which bars are nut free (DD does eat nuts). Best to go to the shop where they keep all these and check cals and ingredients. Many have nut. Not sure if the Nature Valley protein bars are not free? We had ensure shakes (vanilla and strawberry) and they are very sweet. I would describe the a bit like melted ice cream, thick sweet milk like liquid. But they are very energy dense and only 125ml if I remember correctly. If she like chocolate, make a hot choc with cream added as a snack. There are loads of choc based pudding/deserts. Would she have them as snack? Chocolate ice cream now it's Summer? Can you make your own chocolate flap jacks? I have a nice reicpe.

Does she like pizza? DD will only take the shop ones (the ones with the calories stated at the front) and I put loads if extra cheese on.

Thank you @Curlyhairedassasin

Just found this thread again!
DD has been fairly stable at 95-100% wfh for a couple of months. She follows a maintenance meal plan pretty rigidly but the AN voice is still loud. She’s at uni so we have much less influence than when she was at school. She’s always on the verge of giving into the AN voice as she sees no improvement, only a “bigger body”. She is resistant to therapy as she sees it as a waste of time - we tried a couple of private therapists and they were not helpful and easily manipulated by the AN/DD. Can anyone give hope that the mental improvement will come or any tips of what we should be doing to help it along?

Hi Waythroughwoods. It sounds like she's could do with some therapy to help her move on but it's hard when they don't want to engage as therapy's success relies on the patient engaging and working on themselves. I have no idea when that magic time will happen as I'm waiting for it with my dd as well. She's pretty much weight restored and eats what I make her but nothing more and never anything different. She does nothing about mentally getting to grips with her ED. I've bought her numerous books and I send her links but I think she ignores it all. Very frustrating.
Hopefully someone will be along with better advice for you.

Not sure if I can give much helpful advice as new to this thread and only recently fully aware of what my DD was facing. The only thing I can say is what our psychiatrist told us yesterday when my DD expressed fear of her AN changing to binging. Apparently, many people are discharged from services too soon i.e. when they are weight restored but not yet fully recovered. She said that maintenance treatment is just as important for recovery. So I think therapy is essential to deal with the underlying issues but I know this is almost impossible when they are resistant to it. I have found Janet Treasure’s book ‘Skills based caring for a loved one with an eating disorder’ really useful in understanding the illness and how to better handle situations.

Saw GP with DD today. GP said not to worry as lots of teens have low BP and small framed. She was quite abrupt and really not interested. Whilst I don’t think DD is AN, I was expecting a bit more help. The ADHD said she was 78% wfh - the GP said that was totally normal.
Im not convinced but whilst DD is compliant I’m going to push her food consumption. She’s finished school now and all her sport so hoping we can get her weight up considerably during hols. Do you mind if I post her food here as I think it’ll help me see where I can add, maybe with your help? I’ll also weigh weekly and if there’s no improvement in 2 weeks I’m taking her back to GP. She’s 36kg & 154cm & 14yr old.
Bfast - olive focaccia & hot choc with ff milk (no cream as doesn’t like it but I’ll work on that). Lunch - salmon, rice, half avocado, half mango with soy & honey ‘dressing’
snack - strawberries & 33g milk choc bar
Dinner - diced lamb, peppers, buttery couscous

I know I need to introduce puds, more drinks & snacks.