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.

Sorry it is so tough for quite a few of you. @SoTiredNeedHoliday i tend to just sit quietly and wait tbh. Once the extreme hysteria has died down a little I start testing the water with ‘I am so sorry this is so hard for you’ or ‘I can see how hard this is for you’. And if that does not set off another rage/ bout of hysteria I move onto things like ‘I can see this is so hard for you but we need to move on with the day’. And try to move onto the next activity (usually eating...). I say things like ‘although this is really tough you working so hard and I love you. We are in this together as a team. I am here to do the hard work when it seems impossible for you. I am here to take the pain of the monster/ voice/ thoughts (delete as applicable to the one that least winds your Dd up) in your head and deal with its rage. I know what you need to be healthy. And i am not going to stop until we have this beaten.’
And then say nothing. Do not get drawn into discussions around logic or weight or calories. Just keep trying to get her t,o,move onto the next thing.
‘Let’s get breakfast done then we can move on with our day’
These meltdowns are so hard to,deal,with but I have found less is more talking wise.

@Valleyofthedollymix in our experience the extreme tiredness wore off after a few days. My DD still,finds sleep easier but the inability to get up wore off quite quickly and she is functioning on it at school well.
We take all our dose (5mg) in the eve to avoid the daytime slump I am not sure she would cope with school and a morning dose.
I was told it builds up in the blood stream so it’s not that important when they take it, I know others have been told different though.
I think the power of some decent sleep can not,be underestimated, my DD was up half the night before starting and waking really early and getting in a heightened state of anxiety for hours before trying to tackle breakfast. The drug did away with that so breakfast became easier.
The weight gain issue people read about is only because it increases appetite. Which is the point I guess.... but this is the eternal dilemma for EDs the drug is there to help you gain weight, ergo people gain weight, ergo anorexics don’t want to take it. In the same way eating does the same...

Thanks for these thoughts @Lottsbiffandsmudge and for the useful advice about dealing with meltdowns/intransigence. I don't think we handle it well as I think we're conflict-avoidant - in some ways I think we need to poke the bear a bit more as we're just getting absolutely nowhere.

No weight gain today. Not one gram lost or gained. I just don't know how she manages to maintain quite so exactly. I had hoped that the Ensure might boost it and, eventually, the Olanzapine.

The consequence of this is that we're going to go into school for lunchtimes and sit in the car with her favourite Pret sandwich and some yoghurt. I'm sure she'll manage to take off the calories elsewhere but maybe the horror of this will act as an incentive. I don't understand how we managed to get the first 3kg relatively easily with a similar diet but have now stalled so thoroughly.

Because she maintains, eats at least 2000 calories and has her period, it's not as if she can be admitted. But we're just stuck.

PS re. her seeing the scales and it setting her off, that sucks @SoTiredNeedHoliday. Really frustrating and upsetting for you.

I guess once they put weight on more cals are required to fuel that weight. And her periods coming back will have taken energy up. Has she grown? (sorry i am ashamed to say I cannot remember how old your DD is).

She's 14. She has apparently grown half a cm (from 165.5 to 166) but I'm not sure how height can be measured so accurately. This had the annoying effect of moving her WFH down.

It feels like her body has somehow adjusted to more calories, the way that it does with fewer when you're on a diet. We've clearly just got to find a further 500 a day somehow. But honestly, she can spot a drop of cream in soup etc. Today I went to a very fancy famous Italian deli and got some fresh pasta and sauce which has no calories on it. Fingers crossed.

[I mean no calorie content written on it. I'm hoping that it has a great deal of calories within it...]

I managed to get DD to eat breakfast and lunch she's still upset with me though. But she wants to go back to school so she's eating.

What have you told your school / or what has DD said to her friends? I think I might get the school to tell DD's friends in advance so they don't say something triggering? What do you guys think?

My Dd told a few close friends (she is in a group of 4) during the worst part of her illness that she was having some ‘mental health’ issues and needed to eat more and stop exercising. I don’t think she mentioned the AN word.... I then spoke to the mums of the girls and let them know the full story.
Her friends have been amazing and are my eyes and ears at school with the support of her amazing head of year. Since going back she has told another close friend too. Last weeks report was there was nothing to report! Music to my ears!
People who don’t know do say triggering things or indeed ask to share DDs snack but Dd has so far coped with it...I guess that is why they need to be ready for the extra pressure school brings...
In other news my DD played a match with her boys team against the older girls academy side at Arsenal yesterday and the upshot is that she has been asked to trial for U16 Arsenal full academy next season.
On the one had I am made up for her, and on the other terrified.
All my ‘I am not trying to make you unfit’ assertions have clearly been proved correct but the rigours of an academy setting will be v hard. However she wouldn’t start until Sept (if she gets in that is) and she is making such progress it might be fine.
I do not think I can stand in the way of her dream...the loss of this damn sport was what led us down this route in lock down in the first place.
She has worked so hard to get (hopefully fingers crossed) as near as damit to 100% wfh tomorrow and I have the summer to work on the flexibility. And she has a massive incentive.
The academy may provide nutrition support and def training support so that will help too. ‘Not knowing how much to do’ is one of our major issues.
Head is in a whirl....one step at a time I guess....she has to get in first!

@Valleyofthedollymix good luck with the pasta.
I hope everyone else is having a better day today...

@Lottsbiffandsmudge thank you I think that is a good way to give a little bit of context without disclosing too much. You are right DD will need to be ready for the extra pressure that school brings and I am sure someone will say the 'wrong' things, it's hard not to.

Fingers crossed for your DD with the football trial, that sounds like an excellent opportunity!
When did your DD get back to training? My DD was on A team lacrosse, & netball does ballet, and plays tennis all at school, I am hoping that during the summer she will be able to get some fitness back, shes very much on a 'no exercise' schedule at present. Sport is so important to her and in normal times I think it helps her maintain balance with her studies.

lotts what a fabulous achievement and opportunity for your Dd. I think the mental health side of sport (as well as nutrition etc) has transformed in recent years so I would hope the academy set up to be a positive, well thought through place...

Wow @Lottsbiffandsmudge that's huge! I can't imagine the pressure though - it's not something you can hold lightly. I hope she gets it.

@Valleyofthedollymix was your DD measured with the same height measure? DD1 lost 0.7cm last week - I suggested it was improbable, and because DD1 was being silly, she said 'let's try this room!!' - she regained the 0.7cm in that room and they realised their measure needed adjusting in the other room It's very frustrating when you think you're doing all the right things but it doesn't show on the scales.

DD1 did 90 minutes at school today. She enjoyed it but needed a sleep afterwards. School have sent through a much more accurate and specific EHCP draft, so I'll accept that.

I like the idea of shrinking and growing taller rooms - Lougle! I'd definitely choose the growing taller measuring room - my decidedly average 5ft4 being would much prefer a 5ft6 measure 😂 glad the schools redrafted EHCP is better

@SoTiredNeedHoliday we were in lockdown (diagnosed just before Xmas) so there was no training. DD exercised throughout her illness though to a plan devised by her FA coach. DD took liberties with it tho and secretly exercised and the sessions her FA coach devised she did to the extreme so that by the end they did not resemble what he intended. However she knew that if she wanted to go back to proper training she had to get the weight on and by 29th March when it came back she was prob c 90% wfh.
I have always shamelessly used the ‘no eating= no football training’ route and it has helped having a massive incentive.
Because she exercised throughout she was already eating the cals she needed for training and when she went back to sociable sport we banned all her ‘alone’ type exercise (core, weights, ladders etc) as these lead to compulsive thoughts more readily.
Her weight gains have been better since the move back to training as group training by default is less intensive ironically than the same time spent on your own in a field running your self ragged. I am not going to lie those months from Dec to Mar were bloody. She was a mess and actually probably shouldn’t have been doing the exercise but her KW recognised that sport and fitness were her key drivers not body shape and allowed it. But DD and I have many many fights and meltdowns over it.
She has come on so much since the last 10% went on and she has gone back to sport. There have been some massive bumps on the way with confidence etc but she is much much happier.
And I am totally vindicated in my feeding plan as she now has a trial at an academy despite my best efforts to ‘make her fat’....

Massive massive congrats to mini Lotts! That's fantastic news - as an Arsenal fan, we need all the good players we can get. You've clearly failed in your best efforts to turn her into a massive porker.

I feel sad that DD isn't doing any sport. It feels really counter intuitive but they've said she needs to be 85% (currently 80). We had a bit of a meltdown yesterday over her taking so long to eat an apple and PB - she took so long that she started fretting about having to eat supper so soon afterwards. And she was angry that she'd had to miss the d of e practice expedition (in the pouring rain) at the weekend. 'It's so unfair, I get the worst of all worlds - no d of e but lots of food'. This is how illogical she's become.

@SoTiredNeedHoliday DD hasn't told her friends. I wish she would. They'd all be sympathetic and one of them has had mental health issues of her own. But she's pretty closed and self-conscious, always has been, very scared of judgment.

@Valleyofthedollymix my DD too is upset she's just missed her dofe exped. How does she explain the food / bigger snacks at school? Or is she still at home?
It's a no win situation for the carers until they recover and that's going to be a massive win for DD/DS and all of us.

DD has now started saying that she doesn't have AN and never has, its only been a few weeks since she accepted that she had it. These poor young people the AN really messes with their whole life .

DD has also started saying she can't concentrate on her school work, it is worse than before she started eating more to 'refeed' Has anyone else had that happen?

DD is back at school and her weight gain stalled when lockdown ended. In terms of explaining the extra food, it's only a snack in the morning (a protein bar usually) and then lunch should be more or less the same. Though we suspect she's not having the snack and not eating much for lunch, hence us going in with her favourite Pret sandwich and sitting in the car with her while she eats it. She also has Friday afternoons off as that's an afternoon of PE.

She's definitely doing less well academically because her head is filled with thoughts of food. She's got some internal exams coming up and she just does endless exquisite and elaborate revision notes rather than learning anything. Honestly, they're works of art - like the anorexic brain on a page. She's in y9 and none of it matters anyway. I've told the head of year to make sure that all the teachers are aware and there are to be no comments or repercussions if she does badly.

BTW I thought this was an interesting article
www.dailymail.co.uk/health/article-9557043/EVE-SIMMONS-NHS-stop-treating-people-anorexia-like-prisoners.html

I know it's the Daily Mail but this journalist also has a campaigning website called Not Plant Based against all the stupid wellness/orthorexic stuff on social media.

She's arguing that too often anorexics are stereotyped as devious and problematic and that some treatment reflects this.

Well done lotts dd! I hope that gives her a confidence boost.

We've just had a weight check, dd has maintained exactly the same weight as last time which is fine.

She was really upset when I picked her up from school though as had fallen out with two friends over a misunderstanding. One girl had grabbed her face and both girls had called dd annoying 😕 Dd was heartbroken 😢

This is what tends to happen with dds friends, it goes along okay for a while and then the other girls seem to get fed up with her or dd makes a mistake (says something wrong.) It was one of the reasons I suspected ASC as this has been same pattern since she started school.

Thanks for sharing the article @Valleyofthedollymix . It was a very painful but necessary read. It has strengthened my resolve to be more patient and keep doing what we are doing.
Excellent news @Lottsbiffandsmudge !

@SoTiredNeedHoliday we seem to be hitting the same issues. My DD thinks about food all the time between 'feeds' it's dominating her brain.

@Girliefriendlikespuppies sorry DD had a difficult friends day. This just doesn't help does it, but I think also such difficulties are part of the cause (in our DD case). Wish we were back at home school for lockdown in that regard!

Does anyone have any experience of setraline ? I think DDs anxiety drove the AN in first place and it's very present and she's very depressed now, I sense the olanzapine is a factor in the low mood. I'm going to trust the clinic but if you had good stories to share with setraline I'd love to hear them! Possible Side effects seem negative online but then everything has potential side effects!!

Hi all, sorry to jump back in without catching up, it's been a crappy month or so since I last posted.. caught dd putting food down the toilet, had a big talk, lots of tears, tried to make a positive plan.. referral to camhs could take 12 months +, I phoned the dietitian and had a bit of a rant about the lack of support. To cut a long story short, dd has just completed 14 days of drinking 1200 cals a day + her usual 3 small meals + snacks... but only gained 1kg!! I'm so disheartened. Surely jumping from 600 cal to 1200 should have had more effect than this! All the bloody hours spent getting them down her.

@Worriedaboutitall I feel for you - it's so exhausting, isn't it? Unfortunately, 600 calories extra means she's had 8400 calories extra over the course of the 2 weeks. They say that 7700 calories is 1kg, so presumably, the first few calories helped her maintain, then the rest gave the 1kg gain.

If DD1 has less than 2000 calories she maintains or loses. She needs 3000 to gain properly.