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!

We aren't at the stage yet but my friend has 2 DS's and has had to have the awkward chat of telling them to tell their GF's to be quieter 🙈

Yeah it's a mixed bag of emotions, I'm glad she's happy and I like the bf (so far 😉) and yy to it being a normal part of growing up but it's still hard to accept. Dd has always seemed young for her age and definitely regressed due to the ED and pandemic so this feels like a big leap towards adulthood.

That said I text the bf's mum and she made it clear dd would be sleeping in the spare room 😂

Nan I think exactly the same re smoking weed 🙈😂 the few times dd has got drunk I liked the fact she ate more because she was too drunk to care 🥴😂

Hi everyone, so sorry for those of you struggling. It's so difficult to read some stories, it still feels like a club we don't belong to yet, if that makes sense :-(

Dd had those horrible 3 days eating only 200 cals a day but has since been doing much better. We just had to go against CAMHS's advice and start allowing her the control she needs and she's rewarding us with a very compliant gradual increase in her calories. She's agreed to upping by 100 cals a days and she's doing it, we're at a 1000 now! Whatever she decides and agrees to, it happens, no cheating. She still wobbles a lot and gets very anxious but we try to find replacements she's more comfortable with and we seem to be getting some success that way.

We've now had the first session with the adults ED unit. No information really other than we'll receive their report and plan later. Plan appears to involve a lot of online group sessions... not sure how that's going to work or help so I'm holding judgment for now. There's a lady in CAMHS who has been amazing, calling me every day, providing advice and support, so I'm definitely going to miss having her available to talk to! They said it would not be an abrupt transition so we'll see how it goes

Take care everyone

So what is mentioned by LaCerbiatta, is what DC is doing with CBT-E.
She decides. Each week she is weighed and she knows what is is. If not gaining weight she needs to adjust her meal plan.
I doubt she has more than 2400cal) day but is slowly steadily increasing in weight.

I'm just a bystander, not arguing, not pushing, just "giving hugs" if she struggles with it.

As mentioned, it's approved in the Nice guidelines and can be useful in older teenagers

Oh that's really interesting - this is pretty much what we have been doing but I thought we were the only ones and that we were doing everything wrong! It's definitely helped DD and there are no arguments if she has agreed in advance. Anyone got any good links to CBT-E, if that's what this is called?

Sorry, can't link.
But some on
Nice guidelines
Cbte.co
Google Riccardo Grave

How interesting, had no idea this was part of the CBT-E approach. We just quickly (and dramatically!) came to the realisation that this was the only way that would work. Also with dd potentially being on the spectrum we already knew that control was going to be key.

@LaCerbiatta
1000 cals per day is way to little. did Cahms suggest that figure? DD was doing 800-900 when she was admitted as emergency to hospital. Is she still attending school on so little intake? DD was on bedrest on similar cals.

What help are you getting from Cahms/the ED team?

@Curlyhairedassasin yes, indeed too little, we're aware. But before she was having 700 cals and we were completely helpless in forcing any more. When we did force it on CAMHS's advice it all went very wrong and she dropped it to 200cals a day as she panicked with the loss of control.

Now we have an agreement that she adds ~100 every day and that's how we managed to get up to 1000 cals yesterday. Today should be 1100, etc.

I know it's not enough and my guess is that she's still losing wait, but it definitely is a step in the right direction and we're really hoping she'll be on what she needs soon.

*losing weight!!

FBT is great on paper but all sufferers are different and its just not going to work well with everyone, especially the older teens. We had to let dd feel she had some control to get her to eat, very slowly upping the cals and letting her help create a meal plan. She's never known her weight though and we have no scales at home. I think this is why we have issues with camhs as they seem very black and white and more tuned to younger ones who perhaps haven't had much free reign deciding on meals so parent being in control is the norm.

@LaCerbiatta dd had lots of online sessions. She didn't really interact in them though because she didn't want to be seen on camera. It turned out that we saw another girl we knew on camera which was a shock. Not sure they were helpful tbh.

Online not great.
DC is having 1to 1 sessions.

I took bits of advice from camhs and here and YouTube etc and we muddled through and dd eats well now most of the time. Probably 2500 ish cals. Breakfast alone is over 1000.
Eating isn't enough though. She's still very mentally unwell.

I suspect DD is in calorie deficit during the summer break, lower input than what she ate to maintain her 106% wfh that she reached before CAMH's discharge. School lunches were supervised then, now at home alone I doubt she is making the right choices. I push a high calorie dinner but sometimes more is left on the plate. I just don't know what else to do - her internal eating rules are still there, she struggles making food decisions.

I am at a loss as what to do - currently her day goes like this -

Breakfast - sugary cereal with FF milk.

Snack - she may take from the snack drawer (she often does) as she has a sweet tooth.

Lunch - she will make her own lunch: say 2 boiled eggs and buttered toast, toasted ham wraps with crisps, noodles (will add cooked meats to these) - possibly sufficient but I am never always sure and this is when my anxiety kicks in.

Snack - she may take one - I don't know.

Dinner - I will make and present a calorific meal (eg pizza and wedges) with a dessert.

Supper - often makes a bowl of cereal.

There are never any 'calorie' drinks consumed, tbh we don't have them in the house (during refeeding fruit juices would cause distress).

In one way we are allowing her independence during the working day - although I am nervous of the ED sneaking in when we are not there - the choices can be minimal (for example at KFC maybe choosing 2 pieces of chicken). Our other younger daughter eats more than her elder sister (12 and 16 year old).

I am not weighing DD16 - I want to but I am worried that this may be triggering and she could point blank refuse - hidden beneath her baggy clothes I can't tell if she has lost weight.

The question is what else could I / should I be doing. As an older teen now outside of school it does seem like we have less control than 18 months ago when she was younger and school could assist.

Any and all advice welcome. @BagpussSaggyOldClothCat how do you achieve a 1000cal breakfast?

@Threeyearsalready thanks - looks really interesting. And reassuring to hear other methods as FBT was a complete non starter in our house and I always felt a bit like I'd failed. It's true, everyone is different, and everyone supporting someone is just muddling through, trying to do their best and get the food in.

Early days for us but part of the programme is to help prevent relapse in the future.

Nomoreplease23

I very very VERY slowly built it up to that amount so she hasn't really noticed. She has overnight granola which I make the night before. 100g full fat Greek yogurt with 20g double cream stirred in, 80g granola, 40g honey and a sliced banana, all layered up. She has it with a decaff coffee with 50g double cream.

Or sometimes she has porridge which is made with 50g porridge oats 100g cream, 20g honey, a sliced banana and grated chocolate on top. Again with the coffee.

Snacks and lunch are often woeful so I have to ensure a decent breakfast and dinner. I am for 1000 cal dinners. Trouble is as they gain weight they need even more to sustain it so increasing cals is really important.

Nomore your dd sounds like she's eating more than mine is atm 😕
Today dd has eaten;

Granola cereal with ff milk

A biggish slice of home made banana cake

Bowl of strawberries

I made her a tuna roll which she pulled apart and ate about two mouthfuls of telling me she's not hungry 🙄

A brunch bar

Dinner and pudding unknown as she will be at her boyfriends house.

I think she's barely scraping 2000 cals a day now even with me maxing the amount of calories in her dinner.

She does seem to be maintaining her weight though, I don't know what more I can do tbh.

@Nomoreplease23
Is there a way to ensure she has a snack. DD has a high calorie protein bar for the morning and afternoon snack (plus greek yogurt and fruit) - there are a lot of bars out there which are about 200-250 calories per bar so quiet a lot of calories very condensed.

@BagpussSaggyOldClothCat
I am very impressed by your breakfast too!

It's taken well over a year to get her eating fairly well with slow portion increases and slow weight gain so as not to freak her out. I can't relax too much as I know it can turn to shit at any moment if she decides she's too fat/ugly. One day at a time.

@Girliefriendlikespuppies thats how I feel - I don’t know what more I can do, but after 18 months of intense FBT I am programmed to feel that I should at least be doing something - not sure what though, I live on high alert. DH is more laid back - I take on the stress that he isn’t being vigilant or pushing the food as much as me (if it wasn’t for me we wouldn’t be having desserts after dinner), he has the ability to turn off - I wish I could, my anxiety around meals goes back to when plates were thrown and language was vile - we haven’t had this for over 12 months but like PTSD this lives with me everyday.

What are peoples views on weighing DD and how to perhaps go about it - at 16 1/2 do others who are not at the crisis stage do this and how. I suspect this is for my own piece of mind to quell my anxieties and if so does that make it right to do it and risk unsettling DD?

Hi everyone. Dd saw the adults ED team for the first time yesterday and is like them, is a lot more positive about them than she was about CAMHS.

We were on this gradual cal increase plan that dd agreed to of 100 cals a day and they told us that it is too aggressive and would likely trigger compensation tactics like exercising, fidgeting or even purging. They advised that she stays on ~1200cals for a few weeks. This is very much against what CAMHS were advising..... not sure who's right and we'll monitor and adapt if needed, but thought I'd share.

@LaCerbiatta

I think this is bonkers and way too low. She will lose weight on that sort of food intake and she is already very underweight if I remember correctly.

What is her activity level like? I suppose she is not in school and on bed rest? Your daughter's ECG was abnormal, wasn't it? Has it been redone?

I really do not think you are getting the right level of care and support. But I am relatively new to it all. Hopefully some of the far more experienced posters will come along with better advise.

I sometimes think one of the most important factors for success is how DC feels/interacts about the person from the MH services.