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.

@Lougle I have this exact same problem! He will eat novel foods but then when you give it to him a second time he refuses it. It’s so frustrating and really hard work trying to never repeat a meal. Unless it’s a Sunday roast or McDonald’s and then it must stay the same.

Good morning
We've had a really bad weekend since clinic , think it's the ED giving it one last push! (Oh hush I hope it's one last push). The clinic made DD sit and eat the foods she had missed in the day (the fruit juice etc) and it was awful to see. Dd is so traumatised at moment.
They did say that the olanzapine is best at night as it causes drowsiness so dd is now on 5mg at 8pm. She's sleeping well so that's one good development.
@Girliefriendlikespuppies I'm sorry to hear about your grumpy day too. We have a visit to gran coming up which I know had the potential to go wrong. She is always talking about food and what's in it! I'm going to give her a few pointers before we get there but I know it's hard for her to understand.
Hope everyone having a better weekend. I keep telling myself and DD each day is a step closer to recovery even if it's a bad day.
I must say, I had hoped the tablets would make more of a difference to the anxiety in the daytime but so far only benefit is better sleep (which is a good thing too)

@myrtleWilson the pie sounds delicious I hope it turned out ok. I'm very interested in how the transition to adult devices goes as we will face that in December. Can't face thinking we may still need it.
@Lottsbiffandsmudge
@Valleyofthedollymix - we don't have many options for hiding calories as she's on to us!! Did manage some butter in her risotto last night though. Really great you can get more calories into yours this way. We aren't getting much above 2400 as DD is counting in her head. Choc is still on her forbidden list sadly.

@sm701 I can't stress more emphatically that we are absolutely rubbish at getting the hidden calories in! DD very much on to us, hovering around the kitchen, eyeing us up. Of course I tell her to get out, but then things get fraught and the last thing I want is for all to be hyped up just before a meal. I'm amazed and admiring when I hear of others doing 800 calorie porridge or smoothie. There's no way we could manage that.

Sorry @Chicksy about the added issues of a metabolic disorder. I can't even begin to imagine.

@Girliefriendlikespuppies I know what you mean about kids & diets, but actually I'm not completely convinced that you should let them get very overweight because that seems to me to be storing up issues down the line. Of course, I just think it would be a nice problem to have at the moment, but in reality they've been waiting for my friend's DD to have her stretching out bit and it's clearly got beyond that. I've avoided making any suggestions ('have you thought of getting rid of any snacks?' etc) as I know that the well-meaning suggestions I get tend to be obvious or weird.

• 'Did you know that avocados are calorific?'
• 'have you thought of nut butters?'
• 'you should get her to do strength training' (?!)
• 'BMI has increased massively, in the 70s she'd be considered normal'

etc, etc

Yeah I know valley it's just hard to imagine ever worrying about dd eating too much atm!! Dd has a friend at school who has been really overweight since primary school and I agree it's irresponsible of the parents not to help her out a bit more 😕

I've had a busy day catching up on housework, gardening and life admin. Dds not been too bad although I noticed her crumbling her snack this afternoon as well as spitting her juice back into the glass 🙄 I feel like I'll still be on at her when she's my age atm!!

Hey all hope everyone has had a good start to the week.
Mixed week again here.
Update with school on Fri and they reported that her friends have noticed less extra movement so think that is finally sinking in.
Then on Sunday at football in a very physical semi final she only played 18 minutes after being promised at least a half. She came over before the match started in tears saying she was only playing half and then when she didn’t go back on in the second half I stood on the other side of the pitch getting more and more anxious myself on her behalf as I knew what it would lead to.
The coach explained afterwards that it was because it was a very physical game (she plays boys football) and the opposition are v rough and a defender got injured so he needed to make last minute changes to subs on the hoof. Of course all DD hears is ‘I am not good enough’ ‘I have been dropped’ etc etc
We had tears for a good time after although to be fair she ate and there was no major meltdown and the tears we mainly about ‘being dropped’ and not ‘lack of exercise’ although that was briefly mentioned.
She has always had this lack of resilience when it comes to football and despite my repeating the evidence that she is indeed a great player (which she is) she always focuses on the perceived negatives.
Tonight she has a big game with her elite girls group (against a girls academy) and now she says she isn’t good enough to play.
Tbh I am going to force her to. I have tried to explain that these things happen in team sport and how you deal with them says more about you than the actual incident itself. She has to ‘get back on the horse’ so to speak.
We have said a few times that she can drop football altogether but she can’t contemplate that either.
She needs help with her low self esteem, resilience and confidence and so I hope at some point she can engage with therapy to work on these things.
Weigh in day tomorrow and goodness knows how school will have affected it.

Sorry that was very in eating disordery but these issues are at the heart of what drove my DD to AN in the first place. Elite sport is so difficult to manage at her age because you don’t want to pressurise but you also want to support their goals.
I currently hate football with a passion!

Un eating disordery sorry

Hi @Lottsbiffandsmudge
That all sounds very stressful, but I do think it's all linked and at the heart of many of our related issues. My dd has v low self esteem too. She's super pretty and clever , she's got the world at her feet. But she can't see it. She thinks her pencil thin arms and thighs are fat and basically wants to disappear.
These poor kids! I feel the key to recovery of the AN will be reprogramming what a normal body should look like.
Hope you get your dd to her match. You are right, resilience is very important in life. Look how tough we all are as parents now!
(Although I do feel a bit broken to be fair!)

@sm701 it seems a fair few with Ed's are clever, pretty, high achieving in whatever area.
It does make it so hard when you can see their potential and the illness stops them seeing it themselves. 😥

and yes to feeling broken. I actually feel worse now the worst is over. And I am unable to relax at all and I am not sure when I ever will be able to.

Thats interesting lotts and sm701 - whilst things are a lot better here , we still have moments - like over the weekend where the ED was clearly back in control...in those moments I feel really slumped and not sure what to say or do- I think some of the 'battle rhythm/momentum' has gone and the adrenaline isn't there to push through. I know we're in a good place compared to many of you and compared to how we were a few months back so I'm not really complaining but just musing I think about re-adjusting to a long/ongoing mental adjustment of my own...

I feel broken today, we started out so well but ever since she got her period back, about two months ago, it's been downhill. It's as if it told her, you're fine now, you're healthy, don't listen to those meanies who want you to gain 6 kilos.

I know what you mean about adrenaline Myrtle - a friend asked me if it's incredibly stressful and in a weird way, it's not, it's almost worse it's a sort of low-level, nagging relentless downer. There's no battling spirit as it's so ongoing and takes such a long time. It's like the second lockdown compared to the first one. Do look after yourself - you might find yourself feeling really run down in that way we so often get ill right after a really busy work project.

She didn't put on any weight and we caught her putting food in her pockets at supper. If she does that while we're sitting a metre away then the chances of eating her snack/lunch at school are close to zero. We a phone call with the therapist and have agreed to try olanzapine and talk to school about supervision or her coming home for lunch and doing lessons on Teams. It's just such a shame as she finds it so hard to make friends and I hate taking her away from the ones she's got.

I was going to try and be encouraging, but I'm just joining you all in the despair. DD1 was going to have a cheese twist, a cinnamon roll and chocolate milk for breakfast. In the end the cheese twist was 'disgusting' and the chocolate milk 'hurt her tummy' so she only ate the cinnamon roll. My Mum (who has a mental health disability) was almost crying because DD1 was struggling so much. But once we got home, after about 30 minutes, she agreed to have a melt in the middle Pudding with cream, so that took her calories up by 950.

Then, for lunch, she decided she'd like the Oreo pancakes from the local cafe. Fine. We ordered, paid the £7, waited 20 minutes for the order and brought it home. She had ¾ of one pancake and said she couldn't possibly eat it. We asked if she might eat it a little later and she couldn't possibly, so we threw it in the bin (it was a sticky affair and also tricky with DDs at school getting jealous, etc.). 30 minutes later, she came through and asked for it. Too late. In the end, I gave her 5 ferrero rocher, because she rejected every other option. She went to sleep straight after, so she must be just having a hard day.

Any room on the misery bench for one more?

It does feel relentless and I'm really struggling to see an end to it 😕

I know we're in a good place compared to a lot of people and that things could be a lot worse but it is still that constant low level anxiety and stress every single day. Plus we're a year in now and I think carers fatigue is starting to kick in 😕

Valley I hope the meds help and yes to monitoring the lunch.

We've got weigh day tomorrow, no idea what to expect. Dd looks okay but is still being such a bugger with leaving and hiding food at every opportunity.

Ugh.

girlie hope weigh in goes okay.

lougle hope today is a better one for your DD and everyones really!

DD is still a bit fragile today - I think its partly supreme tiredness - she's been more active in a socialising sense, plus it easy for me to forget how much fighting the illness will take it out of her - she's battling every day not to succumb to the ED, not to start exercising again, to keep challenging foods. When I step back and think about it she's a bloody hero who is having a couple of low points (as are all are DC - even in their worst moments!)

In signs her cognitive function is improving rapidly, DD has begun reading again and is thinking positively about university (now obviously delayed by a couple of years). She's keen to be out of therapy as of next week but we'll keep an eye on that I think....

Also meant to say - we've bought a copy of Rehabilitate, Rewire, Recover by Tabitha Farrar - it is a book mentioned by lots of the ED recovery folk on social media.. Will share any useful bits...

I have heard good things about that book for older teens and adults. I have read a couple of her blogs and she seems to talk sense!
500g gain here this week. Nearly 97% now. I am so pleased as school meant less gains before Easter.
DD was an absolute star last night and went to her football fixture and despite being v anxious in the car before hand about how well she would do, after her confidence knock on Sun, managed to try some positive self talk and we tried hard not to reassure too much and she stepped on the pitch and had a great time. So that’s another piece of evidence to add to the locker...
Interestingly I have just realised that the self checking (stroking her tummy and arms a lot) seems to have mostly stopped.
Her KW now seems to think she may never have had classic AN but rather atypical as she hasn’t really pushed back much about her body image since gaining weight (1.5 stone now). Instead She thinks it was probably her inability to manage her anxiety around fitness in lockdown that led her to over exercise and restrict food in a genuine attempt at a ‘healthy lifestyle’ that tipped her v quickly into a starved state and all the AN traits and behaviours.
So we are now left with having to deal with the aftermath of that but perhaps without the crippling body dysmorphia a lot of your children have to deal with. I think the fact that her body is ‘proving itself’ on the pitch despite the weight has helped. She no longer nears collapse playing football so we ‘were right’ all along.
We still have a long way to go with extending her food range, tackling her obsessions with exercise, dealing with her self esteem and low confidence and eventually coming off the meds but it feels like we are in a good place right now.
I feel more empowered to deal with what I am sure will be inevitable set backs than I have for a while. However I am still on edge constantly and I guess I need to address that in myself too.
For instance Dd has her Duke of Edinburgh bronze exp coming up which will be 2 days of 6 hours of walking. I am already in a tizz about what the hell she will eat to fuel that but her KW said today it’s important she does it and if she loses weight she loses weight. We are heavy enough now to deal with that. I was shocked tbh but it has made me realise that hyper vigilance may not be helpful. Of course I need to be vigilant and not let up on the food plan and containing her with sensible exercise but I can let up a little on ‘unusual’ stuff.
Interestingly her KW thinks I can use the externalising trick used for AN of separating it from DD with her performance anxiety by calling it her ‘football gremlin’ (that often wears other hats like it’s science test hat etc) or some such and helping DD learn to manage that gremlin rather than ‘changing her thinking’. So we are going to try that.
It’s been such a roller coaster over the last few months and I would like to stay on here and keep chatting every now and then if people don’t mind. You have all been such a support and inspiration and I know we are all at different stages but hope some of this resonates with you.
Positive vibes to all.

Lots definitely stay with us! Our dds are at a similar wfh so I feel like you're following quite a similar journey to mine!!

Lougle and any others whose children have ASD, how long did you have to wait once all the assessments were done? Dd had the final assessment yesterday (in school) and I'm wondering how long it will be to hear the verdict 😬

You're doing so well @myrtleWilson and @Lottsbiffandsmudge.

@Girliefriendlikespuppies DD2 (13) never had an assessment in school. They were asked to do questionnaires, but no school visit. We had assessment over 2 days, one week apart. She had ADOS one Sunday, then 3Di interview the following Saturday. We got the verbal diagnosis then, with a report issued about 6 weeks later.

DD1 is really tired this week. Today she had breakfast, had a nap, had morning snack then had another nap. I had to wake her for lunch.

We go to annual review at 15:15.

@Lottsbiffandsmudge please stay! You've done so brilliantly on the feeding up front. DD needs to put on a similar amount of weight (1.5 stone) and so far we're just a third of the way there, god possibly less with this week's setback. I would love a 500g gain a few weeks on the trot.

Very interesting about it not being 'classic AN'. I think DD's is very much so - it is tied up with looks (among other things) while both her cousins' have disorders that seem to be more tied up with very complicated feelings around self-worth as well as more general depressive tendencies.

@myrtleWilson please share any wisdom gleaned from the book. I bloody hate reading these books as in the main they are badly and very repetitively written (she says snobbily). So please do the hard work for me!

@Girliefriendlikespuppies good luck with the assessment. Interesting.

Thanks Lougle I've not heard anything from them yet other than a copy of an initial report they wanted me to check. The report says 'probable Autism' hoping for something more definite than that!

So dd is now 56kgs 😊 Lougle would you be able to work out her wfh for me please? She's still 170cm and was born in 2006. I'm guessing it's around 97% wfh like lots dd. She's just had a moan about wanting to know her weight, she has a right to know apparently 🙄 I changed the subject!!

I was sort of hoping with the weight gain I'd of seen some improvement with regards to her 'rules' around food but perhaps that's optimistic?

Yup no real flexibility around food for my DD yet unless I force the issue (on that point we are having pizza again tomorrow for lunch and because my mum is staying for dinner and I am stretching my spag Bol I am going to ask her to eat a piece of garlic bread to ‘make up’ for her slightly smaller portion...we’ll see how that goes)
With regard to the ‘classic’ AN issue my DD has never been interested in looks. She has always been a Tom boy and has never been interested in make up, doing her nails etc etc. She said today at lunch that she doesn’t want braces for her teeth as she cannot understand why everyone has to be perfect! So the whole body image thing never rang true for me and although we had the whole 6 pack thing that was really a fitness issue which has always been her driver.
Hope clinic when well @lougle
@Valleyofthedollymix I too cannot read at the mo. Literally no concentration. I have about 5 half read books about anorexia....

@Girliefriendlikespuppies I've still got her D.O.B in my inbox, so I've used that. She's 96.58% WFH now.

Annual review went fairly well. One of the issues is that they didn't get an EP assessment as requested by CAMHS. I was asked what I was hoping to gain from an EP assessment that couldn't be achieved by school identifying needs. I said 'if I was confident that school knew DD1's needs and was going to address them, nothing...' the chap leading the review said 'Oh! Well that makes sense...'

Anyway, the upshot is that they've finally understood that DD1 needs significant help. They have a whole team approach, with 'in house provision' and 'inclusion' and they'll be using both for DD1. I did point out that it should have been implemented last August, but what's done is done.

They've taken on board that DD1 is likely on the spectrum, but she still has about 18 months left on the waiting list. The chair of the meeting did hint that private assessment might be helpful, as she has college to think about.

We're starting really slowly with school. DD1 is going to go in for just tutor time tomorrow (20 minutes), then 1 lesson on Thursday (45 minutes). On Friday she should have Personal Development, discussing consent, but they raised the fact that I'd reminded them that DD1 really kicked off last time they did 'sex' topics in PD. I asked DD1 if she would cope with talking about or listening to a lesson about sex with boys in the class and DD1 emphatically said 'No!!!'. So they're going to arrange for one of the teachers to give her an individual PD lesson tailored for her, then they will visit the rabbits.

They've even taken on board that they need to address her sensory needs, so that's positive.

Sorry you are all having such a hard time. Not much improvement here, he’s refusing meals again. Today I made cauliflower cheese (full of cream), with sausages and broccoli - he ate the broccoli.

@Girliefriendlikespuppies when DS1 was assessed the appointments were spread over an eight month period after which they had a ‘formulation’ meeting, then I was invited in CAMHS the next day for the result. Was told he scored highly in every area - which is what I was expecting. With DS3 the system changed completely and he had all the appointments Monday to Wednesday, formulation on the Thursday, then I was telephoned with the results on the Friday. Was told he didn’t score in every area but had scored enough to be confident in autism diagnosis. Again, was as expected as I could see DS3 is not as severely impacted by his autism as DS1. Although in a way it’s harder for him as he has a much greater awareness of his own difficulties and differences. With both of them the full report followed a few weeks later.

Actually, when I was at University I was referred to student services and had an assessment by an Ed Pysch who told me I was probably autistic, she said she was as sure as she could be and I was strongly encouraged to seek a formal diagnosis. I never have done though. Seems a bit like a moot point now. I never tell anyone.