teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Camhs won't ditch you, your dd is still really unwell and she will be on their radar. It's good you keep contacting them but at the end of the day you the parents will be the ones doing all the hard work.

Camhs have not been a great support to me tbh, I've been given minimal support and guidance. Dd has been seen once a fortnight and weighed once a fortnight, the only advice they gave me on getting dd to eat was to put the food in front of her and stay calm I emailed her key worker a week ago with loads of questions and have not heard anything back.

Can your dh stop work for a bit? It is a full time job getting an anorexic to eat 6-7 times a day. Look on the FEAST website for some more strategies on getting her to eat.

Which area of the country are you in?

That is great news @DayB1Day - it is like a game of Snakes and Ladders isn't it (albeit a lot more stressful). But celebrate the good days and draw upon the memory of them for the tougher days.

I am hopeful that some of the therapy may be landing with DD.. not yet enough to see changes in eating but she is talking more which is good. She's also less in 'denial' (or more accurately she doesn't attack us for saying things she doesn't believe). So today, I was able to point out that CAMHS with all their pressured resources were providing her with weekly observations, weekly family therapy, weekly 1-1 therapy, weekly dietician call and as of Friday they're looking to put in place another weekly skills based session for her to learn/test out some coping strategies. All of this, I explained, was because in CAMHS eyes she is a concerning case and not because they have money to burn. She nodded and took it on board... a couple of weeks ago that would have been aggressively pushed aside.

Am counting today as a small ladder climbed but am aware of the snakes lurking round the corner.

@Girliefriendlikespuppies - are there any support groups for parents near you? I appreciate in current climate they may not be running, or it may not be for you but I think keeping an eye on ones own mental health is really important - can't pour from an empty cup and all that...

How is everyone else doing?

Glad you had a better day day will check the pm later.

Myrtle talking is a good sign, I explained to my dd that the eating disorder literally changes her brain so that she believes she is right even when every single other person in the world is telling her she's isn't!! She did seem to take that on board as I think it made sense to her, our girls must know on some level they're in the grips of madness.

Today has been okay ish, she had a couple of small wobbles but has eaten okay. I'm wondering when to try being a bit more forceful with a few fear foods, crisps and chocolate are the main ones but there's others as well.

ah the fear foods - I think we're a way off that yet but I hope you make some progress...

Today, DD is going to try going back to school - hasn't been in for four weeks and is understandably both keen to go and anxious that she's off the pace, that her re-emergence will put her in the spotlight.

I hope she has a good day 🤞 - wish her luck!

Best of luck, Myrtle's DD! And everyone else's dc too

We've had bloods done first thing this morning - went to a cafe afterwards to get some breakfast and dd2 ate a whole toasted teacake without any moaning, or even breaking it into tiny crumbs for 3 hours before consumption

It feels like an epic victory

(I know she probably won't eat any lunch at school now though)

Sorry theyseeher if I sound insensitive but your description of breaking the teacake into tiny crumbs for 3 hours before consumption did make me laugh - when you can abstract yourself from the awfulness of it all, it does have its moments of WTF - how did we get here?? doesn't it?! But I'd definitely count that as an epic victory too....

School done! She seems well, and seems energised by opening up her world a bit. I suspect she'll either be shattered later tonight or her mind/brain will be on overtime. I also anticipate the illness trying to keep her back under its control tomorrow as the last thing the illness wants is for her world to open up.... but as it stands, today is a success, she's planning to go to school tomorrow and we have a re-arranged CAMHS appt tomorrow (last one was on Friday but they're trying to find a stable slot for us so I think we're in for a week or so of teeny gaps and big gaps between appointments)

How much is your dd eating now myrtle and is she being supervised at school with regards to eating her lunch?

I still am not convinced dd is eating much at school, I hope she eats some of it but I expect its less than half....

They that is an epic victory, I find it really hard not to get too excited whenever dd eats more than I expect her to, in theory I think we're not meant to say 'well done' or show that we're pleased (as that's angers the anorexia) but its so hard not to celebrate!!

We had a small win in that some of the OCD behaviour dd developed at the same time as the ED seems to be waining a bit, she managed to walk a different way tonight when we took the dog out and didn't have to touch every single sign. She told me a few weeks ago she believed I would die if she didn't touch the signs, I told her I was wiling to risk it!!

Finally heard from Camhs they're trying to set up a video consultation for Wednesday.

Hello everyone
it sounds great myrtle that your daughter enjoyed school. I hope it keeps her motivated to get better. My daughter was desperate not to be supervised for lunch at school when she went back; she is stable in terms of her weight at the moment so we are just monitoring it. She knows that if it drops we will not hesitate to supervise or bring her out.
great news about the teacake rowling. I love it when my daughter eats something properly - i think the 'crumbing' must be a product of the ED - i can't stand it personally and have to just grit my teeth to ignore it.
My mental health has really taken a battering - I get outside for a walk most days, i ring my family and friends at random (they have been a great support) and i have a secret addiction to the dodo with films of rescued animals . somehow that comforts me. I've done a lot of jigsaws too. She's going to get better and so am I.

and Girlie, i think it's great that you could risk your own life for a different walking route! It must have been very hard for your daughter to admit to that.

DD is taking on board about 900-1100 calories a day I would guess - she eats her mid morning and afternoon snacks but needs fortisip to supplement her breakfast, lunch, dinner and supper and she tends to only drink 50- 70% of most of her top-ups.

She comes home from school for lunch so no school supervision required - and her timetable in sixth form is such that free periods are available to enable her to manage her snacks.

But... in hopefully promising teeny tiny baby steps - she chose some chicken goujons in the supermarket today - chicken had been relegated way way down the order of acceptable food (at the moment her protein at dinner is either vegan substitute or fish fingers). Am not sure she'll eat it when it makes it onto the plate but the fact she put it in the basket is a win in my book (albeit a possibly £ win that ends up in the bin!).

In therapy today we talked about experimenting with breaking some of the 'rules' that the anorexia applies. It was really heartbreaking hearing her describe how she keeps to the mealtime rules that the anorexia says because it is a way of momentarily stopping the anorexia being mean to her So I can understand how terrifying it must be for her to contemplate breaking a rule - but hopefully we'll find a safe space for that to happen.

Girlie I really hope your video consult goes well and congratulations on your death defying walk!

grey - I love your positive sign off - perhaps that should be our official thread sign off for us all? How often is your DD being monitored/weighed?

Hello, hope it’s ok to join in here?

Dd is 18, she’s been restricting what she eats for a while. In the last few weeks she’s lost more weight, she weighed herself last week and was 56kg, so still within healthy limits, but for her frame she’s looking very thin.

She’s waiting for an ASD assessment, has anxiety, depression and OCD things going on as well.
She’s started seeing (well, zoom) a private therapist which we hope will help.
Part of her ocd means she tells me everything, and I don’t know how to handle this, and end up getting it wrong so many times.

I spoke to her GP today who recommended the Eva Musby book, which I’ve ordered, but said that as she’s now an adult services are terrible and unlikely to help unless her bmi is 15 and she needs to be hospitalised.

Everything that’s said or not said seems to push her further. She’s not herself at all, she’s either angry and rude or sad and withdrawn. She has a phone appointment with a dr next week, and I want to ring before to ask them not to discuss the BMI of 15 thing as this will be seen as a challenge.

I hope it’s ok to have posted this here.
I feel so helpless and scared for her.

Oh am so pleased you've posted @PaperScissorsRock - I popped onto your own thread...

I'll now go and read your post properly but welcome...

Thank you!
You pointed me in this direction a little while ago.

Welcome paper the Eva Musby book is excellent, is your dd quite a young 18yo? I imagine the older the teens are the trickier it must be to feed them. The idea is that you take over all food related decisions for them, they are presented with the food and the expectation is they eat it. You have to be able to contain and manage their anxiety for them iykwim.

Eva Musby likens it to supporting them through a bungee jump every meal time. They are terrified and need you to stay calm and reassuring, you have to be 100% confident that the food you've put in front of them can and must be eaten in the same way a diabetic child would an insulin injections, food is their medicine.

We're plodding on here, dd wants more control over breakfast and did manage to do her own porridge Ystd (although if I'd made it I'd of put double cream in it!) She managed okay, wanted to do her own toast this morning but definitely scrimped on the butter so I will do that bit in future 😕

Hello paper, it's interesting to see how differently adults with ED are treated - it seems so arbitrary to just drop them at 18 unless they are in immediate danger of hospitalisation Is your dd at school or college - if so, have they been any help at all

(apologies for certain punctuation marks being broken on my keyboard btw - I do know question marks exist!)

I'm off to chase YPEDS for the appointment they promised me earlier this week Sigh It's a full time job, as I think somebody downthread mentioned before

I know it might be necessary, but I'm absolutely dreading a second lockdown The first one was a big trigger and dd is so much happier when she is busy - probably because she can distract herself from thinking about food 24 7 Plus my mental health is being held together by planning fun things to do over half term If I don't get to that pumpkin patch I might lose it altogether (OK, I wouldn't really, but it would be another downer on top of the rest)

Hi again Paper, my DD turns 18 in a few months and I am worried to be honest about her being ousted from CAMHS... one of the other posters @Bluebuddha10 had a Dd just at University who may be able to offer some advice re older teens. Hope your daughter has been ok with covid Blue?

Hi everyone sorry have been quiet on here. Lots going on at the moment.
As @myrtleWilson said, my daughter is a bit older and just started university. Shes actually 19, had to do 3 yrs on A'levels due to a major health setback with the anorexia in year 2. But because she still needs alot of support around eating, is still monitored regularly by hospital, she had to stay in hometown really. Fortunately a good university, so although shes moved into student halls, she is only a very short drive away. She has just had Covid, which fortunately was relatively mild. Seems to have been left with fatigue, probably not helped by low weight, and low food intake. She was transitioned to adult services at the beginning of this year. Its worrying, cos obviously I cant have the same input and she definitely does not get the same support as she did under the ED service for adolescents. I was really scared about the transition to be honest. Having said that , they do seem to be on the ball. They insisted on seeing her face to face fortnightly all through lockdown etc. I think me and my daughter have got to the point where she is honest with me about what they say, what she is and isn't eating. But believe me it's taken a long long time and lots of tears to get to this point. We've been at this for nearly 8 years. So at the moment there are concerns her weight and BMI have dropped over the summer and another hospital admission has been mentioned. She has to go for full check over tomorrow including a check on her heart since her BMI is very low. I am really hoping it wont come to another hospital stay, and she doesnt either, but whether it's enough of a scare for her to fight against the anorexia , I really forget know. It always feels like a few steps forward and then a few back again. ☹

How did the checkover go today @Bluebuddha10? I really can't imagine what it must be like to be in this torment (both you and your DD) for 8 years - I shudder at that thought but give you enormous props for all you've done and got through....

If you don't mind - how did the 3rd A-level year work out - I'm thinking ahead and wondering if this may end up our 2021/2022 - but how does the school/college manage that?

How's everyone else doing?

I had an interesting phone call today - YPEDS to make an appointment for next week, asking if we were all available as a family

'Yes,' I said, 'DH and I both working from home at the moment'

'And dd isn't in school, of course'

!!!!

Apparently we should have been told that she shouldn't be in school until she is 80% of her target weight - she is currently 78%

So this went down like - well, like food - with dd

At least her 2 week half term starts tomorrow, so we have time to try and achieve the 80% (even then, she is only allowed back part time)

Thankfully she has gone from 'you can't make me stay here' to beginning to understand why it's happening, but it's going to be tricky

We've had a tricky day, dd seems to have gone backwards a bit and is very resistant to everything again 😕 it feels like one step forward and two back all the time.

Managed to get her to eat a bit at every snack/meal time but it was a battle.