Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Sotired i would try and sneak calories in where you can so if your dd will eat toast make sure you buy thick cut bread, I buy think cut loaves from Aldi and they are 140 calories a slice. Add butter and then peanut butter, make sure you're buying full fat yogurt and check you're buying the highest fat/calorie content one!

Got the beef stir fry add avocado oil as it's loads of calories, would your dd agree to porridge for breakfast? You can make that with double cream.

The lack of food definitely brings on depression and anxiety, the brain is particularly vulnerable to weight loss and it needs a lot of fat to function properly.

My dd only eats 3 times a day at the moment so I'm concentrating on getting as much packed into those 3 meals as possible. For example today she had porridge with double cream approx 500 calories, a small amount of smoothie around 50-75 calories.

Lunch was scrambled eggs on toast, I used duck eggs (as advised by someone on this thread!) 2 slices of thick toast, lots of butter and cream in the eggs and ketchup as well. I'd guess around 600 calories, she had a small amount of oj and yogurt with it around 80 calories worth.

Dinner was pesto pasta with tuna, cheese and garlic bread. I added avocado oil to the pasta, I'm guesstimating around 750 calories. Pudding was home made rice pudding made with double cream and ff milk again I would guess but around 300 calories.

So in total about 2300 calories ish, ideally she'd be having snacks to get it up to 3000 calories which is the ideal for weight gain but we're not quite there yet!!

Also, I think (and we're only 3 weeks in) that you need to think about your own child. I know that DD1's eating is bad in the morning and the evening, but lunch is ok. So I try to make the morning easy (smoothie, just drink it) but really high calorie, because she peaks at lunch and so I won't get too many calories in the next 2 snacks and dinner. She's just had dinner and we're at 1759 calories. I know that if I can get a yoghurt and a Jaffa cake into her for evening snack, she'll hit her 2000 calories. Or a yoghurt and about 20 ml of Fortijuice. If I hadn't given her smoothie for lunch, we'd still have about 400 calories to go, which would be really hard.

That would be really useful @Valleyofthedollymix , thanks x

Now I feel like I've run the gauntlet. I gave DD1 a few options for evening snack to get her over the 2000 line. She was yelling and screaming, punching walls, etc. But eventually she agreed to 1 yoghurt and a Jaffa cake. I had to spoon feed her, but it went in.

@SoTiredNeedHoliday yes being underweight/ starved has a massive detrimental impact on the brain and hence emotions/ feelings.
My DD became more and more withdrawn and isolated and obsessed and withdrew almost completely. She lost her weight dramatically quickly ( over about 6-8 weeks although her exercise obsession and healthy eating had gone on longer) and so her personality was change ]d quite dramatically.
After 3 months of slow and steady weight gain (not smooth btw) and now eating 3000 cals a day ( we started from her base of 1500, went to 2200 then 280o then 3000) she is slowly changing back to how she used to be.
She is still v anxious and down but she was always v anxious anyway and the lockdown is getting her down but the AN put it on a whole new level.
But food is so transformative. It’s just so hard to get them to eat... (and in our case sit down) but the rewards are there. This eve we all played wii together, 3 months ago she hardly spoke to me let alone her brothers.

Ok hope this works:

This is for Day 1-3 (i.e. very low, we never did this phase)

Breakfast
Cereal and 150mls semi-skimmed milk e.g. 2 Weetabix
400mls water (or other fluid as indicated below)
Mid-morning
None

300mls fluid
Lunch
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)
200mls fluid
Mid-afternoon
None
300mls fluid
Evening meal
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)

200mls fluid
Bedtime
None

400mls fluid

@lougle well done on the calories! Smoothies are great aren’t they. I started them as eve snack for my DD quite early on as she really liked it. Started with a 250 cal one and gradually we have increased it so now she has 600 cal ones before bed. I like to think of all those cals and fat grams setting her up for some repairing over night.... but I like your idea of using them for difficult meals as well. DD used to find breakfast a nigthmare but the olanzapine helped us with that...

Hello, mn has gone very slow but this is food plan for middle phase of feeding. It says prepubescents shouldn't go onto the next one.

Days 4-6
Cereal and milk (as before)
Glass of fruit juice or piece of fruit.
200mls fluid
Snack of 200kcals e.g. biscuits, crisps, chocolate, crackers with cheese, nuts, cereal bar, fruit

400mls fluid
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)
Yogurt (Not diet variety)
200mls fluid
Snack as mid-morning
400mls fluid
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)

200mls fluid
None

400mls fluid

Sorry that posted with weird things missing ignore the above
Days 4-6
Cereal and milk (as before)
Glass of fruit juice or piece of fruit.
200mls fluid

Snack of 200kcals e.g. biscuits, crisps, chocolate, crackers with cheese, nuts, cereal bar, fruit
400mls fluid
Lunch
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)
Yogurt (Not diet variety)
200mls fluid

Snack as mid-morning
400mls fluid

Evening meal
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)

200mls fluid

Bedtime
400mls fluid

Last one from day 7 onwards

Breakfast
Cereal and milk (as before)
2 slices toast with butter and jam/Nutella/nut butter or similar
Glass of fruit juice or piece of fruit
200mls fluid

Snack of 200kcals e.g. biscuits, crisps, chocolate, crackers with cheese, nuts, cereal bar, fruit
400mls fluid

Lunch
To include the following food groups: carbohydrate, vegetables and protein (see portion guide
Yogurt (Not diet variety)
300mls fluid

Snack as mid-morning
400mls fluid

Evening meal
To include the following food groups: carbohydrate, vegetables and protein (see portion guide)
Dessert
300mls fluid

Bedtime snack
2 slices toast (or other bread) with butter and jam or other spread
200mls milk

Sorry that probably seems really confusing but hopefully it gives some indication. Imagine a normal healthy woman's eating but then with an extra 'course' at breakfast (i.e. cereal, fruit and toast). And with extra snacks in between each meal.

Thanks @Valley. Mentioned the idea of a plan to DD earlier and she seems keen. Let's see how long it lasts.....

Drinking is a real issue for DD1. She really doesn't drink much at all.

Yeah drinking is problematic here as well hence dd having another uti 😕she has actually done better with water today but still struggles with juice and anything like tea, hot chocolate or squash is completely refused.

The meal plans are interesting valley ours is similar although dd isn't really following it at the moment.

It also makes me see that pre ED dd was actually eating the right amounts for a growing teen.

I found the plan helpful for knowing roughly how many calories DD1 should be having in each meal (ours have a Fortisip equivalent next to each meal, and Fortisip is 2.4 cals/ml, so it's easy to work out). But this week, when they asked us to go to 2000 calories, they didn't give us a diet sheet.

Myrtle is right that it's amazing how quickly you learn when you enter this world - I can't believe how far I've come in a month and a half. You also become an expert in your own child's particular issues, what strategies work with them and how they intersect with the treatment you're getting from NHS/Camhs. For example our therapist and nurse don't mention calories and have told us not to use supplements, but for others it's the most effective way of getting weight up (which is the paramount thing).

Although it might be that we don't do calories because I'm too lazy to tot them up! I just eyeball it and most of the stuff we eat doesn't fit with the sort of suggestions from the plan. But DD is fine with that so we'll carry on. We've been giving her a bit more autonomy recently, but if it doesn't work, then we'll have to get bossy again.

Such a learning curve.

Learning curve is the right phrase Valley

Girlie I think you were thinking of changing weigh ins and asked for experiences.. we considered a change (either in frequency or not telling DD her weight) as DD finds obs day so stressful. We spoke to her care co-ordinator and in the end decided not to change as DD really gets distressed with any restoration/gain. We felt on reflection that having a longer gap between weigh in's would create a space for the ED to move into - telling DD how much weight she was gaining and remove an independent benchmark. We also felt that a gap between weigh ins' would make any restoration/gain seem bigger than it was.

Lougle - I agree - for us it was helpful to know calories because of the fortisip read across. We've not had to use fortisip for weeks now I think calculating fortisip top ups will be with me forever now!

sotired - cognitive function is massively impacted by an ED. DD is still cognitively deprived (to the extent we've pulled her out of her A-levels or non A-levels this year). When she was in hospital for re-feeding her cognitive function was at its lowest. In addition, DD has been diagnosed with depression, for a while the team were of the view that DD was depressed and this was contributory factor to the DD, we've had to pull them up on that as DD is quite clear - she is depressed because she is being forced eat - she doesn't want to eat, doesn't want to get better and is anticipating to relapse (she has an idea that relapsing post CAMHS will be the 'shock' she needs to realise no-one else can get her better - which is a theory but seems mighty risky to me and DH )

Hi myrtle I think your dds theory is a delaying tactic, a sort of 'in the future when such and such is different then I'll get better' it's just a way to calm anxiety and not change now. I'm sure you're aware of that though, that's interesting re the thoughts around weigh ins. I'm just terrified atm that dd somehow find out she's gained weight which would be a complete disaster for us.

The situation we're in now feels so precarious and very much like things could go either way. I'm relying on the Government announcement tomorrow saying the schools will open on the 8th of March as that's my leverage to getting dd back on the snacks 😕

I think mentally dd is doing better, she is tolerating more physical contact where previously even if you accidentally touched her she jumped back. She seems more relaxed and engaged but unfortunately still refusing all snacks...

Yeah exactly they there's no incentive to get well, once things start opening up I can say if you're eating well you can go back to horse riding/dog Agilty/days out/going swimming/meeting friends etc etc atm there's nothing!!

Dd was talking about wanting to do a school trip abroad Ystd, there's a history trip they usually do and covid allowing it would be next year. That would be a huge incentive to getting well as atm there's absolutely no way she could go 😕

We had a chat with DD last eve about going back to school. She replied that she doesn’t want to go back as she won’t be able to fit her permitted exercise in and ‘it won’t work’.
Then this morning in review with her psychiatrist she said she does want to go back.
I am at a loss tbh. Got a review on my own with her ED dietician tomorrow and need to discuss how we tackle the exercise compulsion.
I wish we had been advised to just stop it when she was really poorly and nose I could be redintroducing it gradually. Instead of which I am trying to peg it back.
I feel I am still facilitating the ED by allowing the exercise. Even though it has been allowed by her team.
This is so hard as we have just got eating to a point when we don’t have massive wobbles all the time. And we have cut out the extra exercise. To have to go after the permitted exercise now is going to be so hard....

@TheySeeHerRowling she does quite a lot tbh. In week she is allowed 4 lots of football training of an hour each. 2 core sessions and 2 ladder sessions and one walk. My main issue is she is pushing all of them much further than was intended by the plan.... longer and more intense.
I was focused on cutting out everything else (the secret running, the 180 tricep dips a day, the burpees during lessons etc etc) and let the other stuff go...she has stopped the secret stuff and is eating 3100 cals a day.
But Now I need to peg it back as she cannot fit it all in with school. Looks like school will go back before her football training (which I could use as an incentive)...

The whole going back to school thing is scary but such a good incentive. Lockdown has enabled us to control her eating and exercise, but I also think lockdown exacerbated or triggered the whole thing in the first place. Not for nothing have referrals gone up 4x.

But hard if you're also dealing with compulsive exercise, Lotts.

Our therapist and nurse are happy for her to go back and didn't give a awful lot of guidance as to what we should ask for from the school - they said her school is excellent so just work with them (high achieving girls' school so not unknown to ED services). She's put on another 400g so it's in the right direction.

What's less positive is that because she's now in the healthy range according to the NHS BMI calculator that she's been using, she thinks she doesn't need to put on any more weight. Yeah, 3rd centile, no periods, real healthy...

I'm doing the online provision with DD1 now, but I'm going to ask the psychiatrist on Thursday for a plan re. school.

@Valleyofthedollymix that's the bizarre thing with this illness. DD1 has put on a total of 700g since her admission, is still only 70% WFH, BMI 14, yet I'm finding myself thinking 'well she's eating a bit now and she's put on some weight...' No. She's 16½ kg away from her 'ideal bodyweight'.

This illness is affecting my mind, let alone hers!!