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.

I find the FB group quite competitive, tbh. People either aren't having a hard enough time, or they aren't succeeding enough, or they aren't 'fighting/challenging ED enough' or they aren't pushing for 110% WFH enough.... It's a bit draining.

Yeah I know what you mean Lougle i had a disagreement with a woman on there the other week who was berating another parent for taking his daughter on holiday. According to her you shouldn't take a child with an ED on holiday as it would obviously be too much for them.

I pointed out that all families are different and what works for one family might be different to another.

I also pointed out that some kids are ill for a really long time so it seemed a bit unfair that no one gets a holiday in all that time!!

I probably need to step away from my phone for a bit 😬🤣

We're all just doing our best, aren't we? I gave our i2i worker the eye when I was telling her about DD1's menu restriction and she started to tell me that they 'see this issue in people who calorie count rather than following the meal plan.' I pointed out that I started calorie counting because nobody could agree what 'a spoonful' of anything was, so it didn't seem very accurate. She looked a bit embarrassed and changed the subject

@sm701 I was prescribed sertraline several years ago and had a very good response to it. I still take it as I have major depressive disorder and I haven’t had any side effects.

That's good to know @IrisAtwood , thank you for sharing. Also v glad to hear it works longer term as I think with her high anxieties she may have needed this for a while.
I had to come off following FB groups as it was just too much noise. I find this place much kinder and also more manageable.

Just had a major blow out with dd over how much porridge she left 🙄 it's been brewing for a while and I lost my shit.

Told her if she leaves that much tomorrow her phone is gone for 24 hours likewise with dinner/pudding.

I'm so so sick of it.

What baffles me more than anything is her resistance still to any suggestion of recovery!! How can she want this for any longer than necessary? It makes no sense, given she's 98% wfh I don't think I can blame it on a starved brain anymore 😒

Grr.

@Girliefriendlikespuppies what is her targeted WFH? Camhs told me that if the thoughts are still there when DD reaches her targeted WFH that she needs to gain more as the target is a 'prediction' not an exact. Perhaps she needs to be more than 98%?

Does anyone have any recommendations where I can look for high calorie recipes?

Thanks for all your sympathy and suggestions. Really, really appreciated. I find this place to be very uncompetitive, super supportive and that means a lot to me at the moment.

NCTDN, there are some recipes on FEAST I think and I've also found some sites for men looking to bulk out have some useful tips. Not that I've managed to implement them...

Girliefriend, sympathy. How incredibly frustrating that you've done so magnificently but still the illogical persists.

Here we are, can't vouch for them
www.feast-ed.org/wp-content/uploads/2019/09/F.E.A.S.T.-Family-Recipes_Families-Empowered-and-Supporting-Treatment-of-Eating-Disorders_320399_bookemon_ebook-copy.pdf

Brill thanks Valley

Girlfriend could it be your DD is going through an extinction burst? The ED giving it one last go before being WR? Never heard of this before but saw it mentioned on the Facebook ED page (which I agree appears to be rather full on!!)

Probably roller but I've been thinking that for the last two months 😬🤪😂

The psychiatrist said she's currently on the 67th per centile and we're aiming for 75th as that's where she has always sat for weight and height.

Not sure how I work out how many more kgs she has to gain though?! My maths is rubbish.

She's currently 57kgs.

My guesstimate is she needs to be around 60kgs minimum.... that would tie in with my weight at that age so sounds about right.

We're all broad and tall in my family.

Hi all not been on for a while....I too have stopped following the FB group although I am still a member. It seems to have got busier and busier and there are just too many posts to deal with!
So my DD has indeed broken her foot- finally got a diagnosis at fracture clinic today after a referral last Thursday by GP. So she is having to miss her final Arsenal trial tonight.
But....she has not exercised for 7 days. With little resistance. And she is still eating (although I have scaled back the cals gently).
I cannot believe how well she is dealing with this quite massive set back. She still has a shot at Arsenal (I have spoken at length to the coach and it all depends how she benchmarks against the 16 trialling tonight for the 3 places) but to not be able to go and compete directly with them is vv tough after all her hard work.
Also to not exercise AT ALL for 7 days is incredible. It was only a bout a month ago that having 2 rest days a week by accident resulted in a total meltdown down.
And so here is my suggestion @Girliefriendlikespuppies your DD is not at the right weight for her. My DD is now 103% and she keeps improving and improving and she has always been a 25% weight child and so is well over her ‘natural’ weight. She is also changing foods and being more flexible. I can’t tell you how much difference there has been between 93% and 103% night and day.
At 93% if this had happened we would be in a total food refusal and that hasn’t happened. I am not going to suggest the next 4 weeks will be easy but it is going so much better than it could be.
So keep pushing that food in. Ignore the fat phobics (as I ignore my DH) and keep going I hope our experience can show that it does work

At 98% I mean the diff between 98 and 103 is huge...

Thanks lots to was wondering how you were getting on, sorry to hear about your dds foot but that is amazing that she's not kicked off about it. I think most kids would have been gutted about missing that football match even without adding an ED into the mix.

I know re the food, I def feel like we've hit a bit of a wall now though. I've just been called a fu**ing bitch for making her eat another mouthful of pudding 🙄

As she won't add any extras in and I've seriously exploited hidden calories any which way I can I'm not sure what more I can do.

That's really interesting lots as I didn't think 100% wfh would be right for dd but maybe she needs to get to at least that. Dd has been without exercise for the last month and to be fair hasn't reacted as badly as I thought she would.
I'm sorry about the trial and really hope she gets her chance.

Oh god, even 90% seems like a distant dream. Her kg loss means we're back to just below 80. Every day is worse than the one before. I can't believe I'm looking back to January with nostalgia - oh the takeaways she'd eat, the cinnamon buns she'd pick up. I honestly thought we'd be done with it after six months.

It feels like there's nothing of her left any more, it's all ED. Every decision she makes revolves around food and how to avoid it. I think @Girliefriendlikespuppies is right, we need to pull her out of school, cancel everything, take away her phone and just start again to reset. I've sent an email to the therapist begging to get her into the day patients unit to get some meal support as we need to learn some tactics. She bamboozles us and tricks us continually - however much you try not to get into any discussions, you get sucked in.

I'm just devastated. I feel like I have no life other than trying to feed her and I'm failing at that. Feel so terrible for her siblings too.

Oh @Valleyofthedollymix I feel your pain. utter despair . You are doing an amazing job. Everyday you are caring and loving your dd. Something will change one day soon, very soon I hope. At some point dd will want to get better, will be bored of this life , or maybe more medicine will help. But there will be a turning point.

I tried to reduce olanzapine by 2.5 and it really noticed , dd had more very negotive thoughts. So even thought I wasn't sure it was doing anything, I realised it was!
Sertraline has been our pivot point I think. Plus the carrot of doing year end exams. But it's still very very shaky still and dd still 2kg below AN diagnosis weight.

It's a terrible illness. I've never felt despair like this before. X

Thank you so much @sm701, I really appreciate your words.

How much Olanzapine is yours on? We started off with 1.25, went up to 2.5 and have just started on 3.75. I really can't see it making any difference at all. In fact her thoughts have become worse since starting but that might be coincidental.

And how much Sertraline?

And I managed to miss the call from the therapist in response to my email and I don't know when/if she'll call back.

Currently 7.5 mg olan, 100 sert. Noticed real difference when went 50 to 100. But lost 2.kg!!! Regained now, but think any starting dose of sertraline can have initial loss... but it's really turned mood and desire to live a better life....

@Valleyofthedollymix It's so very very hard as the carer, no matter how hard we try we can't fix it without the patients help too, its impossible.

They have to be able to see Ed is holding them back and they are missing out on things. Someone told me a good thing to do might be making a collage of things DD wants to do in the coming years. Perhaps go on a gap year or start uni or go on a holiday with their friends..... None of this will be possible unless they kick the ED out of their life. Perhaps your DD would respond to that?

We have kept DD out of school as she needs to get better more than she needs an education and DD seems to see that we mean business and is somewhat complying with eating but she still lets us know she hates us for it. I've also told DD if she isn't at the required weight (wfh%) I am taking her down a year in school and making her repeat.

I don't want to start a new school year fighting over every bite of food and worried she'll end up in hospital. Equally, I've explained it's not fair on her either, she can't do her best with a starved brain that's just science.

So I would take her out of school and cancel everything and make her see you mean business.

I've also given up my study (I was doing a uni course in psychology) and pretty much everything else I used to do so I am here and focused. It's so draining.
Sending hugs and strength

Oh valley it is so so awful and has to be one of the most painful experiences as a parent we can go through. It's like my dd went to school one day and this complete imposter came home 😢

I do see glimpses of her from time to time, so I know she's still in there but the ED is never far away.

I think your plan sounds sensible and I hope your ED team are helpful.

Thanks for those doses @sm701.

And thanks for your words @SoTiredNeedHoliday. I'm so sorry that you've had to give up your uni course, that is so disappointing.

I think you're right about school, nothing really matters if we can't get her better.

I completely agree about needing the patient's help. I feel like I'm giving this fight everything I have, but she's just fighting against me. Ultimately I can't make her eat. I just went to sit on a dusty war memorial outside school for lunch and had a huge barney over a stupid yoghurt suckie, a tiny kids-size yoghurt. I went with good intentions of being patient and use the correct scripts and she asked me why I was using such a patronising voice. Half an hour of arguing over this stupid effing suckie - god if anyone had seen me waving it, they'd have thought I was the one with MH issues. I said just have one suck, she put it in her mouth, I squeezed and it went all over her top and mask and hair. Cue more catastrophising over the mortification of smelling of yoghurt.

When do you give up? If I do, then she'll just say tomorrow 'you didn't make me have a yoghurt yesterday'.

@Valleyofthedollymix call her bluff, tomorrow just say no school. Who cares about school if you're going to end up in hospital anyway.....

She can have it easier by seeing her friends and eating the plan or doing it the hard way & be with you 24/7 (which is what was needed for my DD) and miss out on lessons. Get the school to send work home for her instead.

You are right you can no give an inch.......