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.

@myrtleWilson thanks so much for your post. I've not read through the older threads yet but will do. I'm in crisis management here. She stopped her monthly back in January and I realised maybe mid March she had. I contacted the eating clinic (we had previously seen when she had suffered with this age 12) but I think it's got so much worse. We have had two sessions with them this week, blood tests and a heart scan coming Friday. Her hormones have disappeared and she has raised infection markers. I'm so worried for her frail body.
I can't believe how much her life has changed. With no hormones she can is flat and depressed and has lost any love of life. Each snack and meal is taking hours and it feels like that's all we are doing. And it's still not enough. I'm so pleased you have come this far now she can see a brighter future. It gives me hope. Right now I think it's unlikely she can complete year 12. She has such a bright future if it wasn't for this evil condition. Looking at really great universities and applying later this year. Seems like a different life now.
How long did it take for the food plan to work? I can't help thinking that if she doesn't get back soon her body will start failing in other ways. This is the worst feeling.

@sm701 For us, DD was restricting to abt 4-600 calories per day during last Spring/Summer and then around Christmas. We managed to get her up to 1800 calories on a meal plan but no further. Then literally one day at our collective lowest she decided that was enough and she wanted to get rid of anorexia - that was maybe 2 months ago. She had started watching some young women with AN on youtube/tik Tok who were engaging in recovery and I think that gave her the opportunity to see how recovery could work for some people but not yet her - kind of a virtual try before you buy??

re school - DD basically hasn't returned in any meaningful way to year 13. She kept trying but couldn't cope so in December last year we formally withdrew her. OMG the stress release that was - just one less thing to worry about, one less thing for DD to feel guilty about, one less thing for the ED to kick her about. Due to a timetabling quirk she can't just re-do year 13 so in September will restart 6th form completely. At first she was a little thrown by this, and the fact she'll be 20 when she finishes school but now she's ok with it (will no doubt have a wobble closer to the time) - she's got time between now and September to be as well as she can be and basically having already done year 12 once she knows she has a buffer zone if she needs it. So don't try to worry too much about year 12 - it can be re-sat. University will still be there and hopefully she'll be in a better place to enjoy University rather than not being able to cope with it... Is the school supportive?

Also meant to say - I'll keep everything crossed for heart scan next week for your DD

Hi All,
Long time no post, i've been too drained to write anything coherant!

DD has now seen Camhs specialist nurse and managed to see the Camhs psychiatrist with the nurse attending too (all virtual). They have decided she should start Olazapine to help with her very low mood and awful thoughts.
Has anyone had success with it? I see some how considered using it.
We're on day 2 but have not noticed anything yet.

We ventured out to the high street today and DD was so self-conscious, it took a long while for her to feel ok there and then on the way home she felt ugly again - This illness is heart breaking, the shattered confidence & the self-loathing it gives our DD/DS's when they are all beautiful people with their whole lives ahead of them. How do you handle it when they are spiralling with these thoughts?

@myrtleWilson it sounds like you have a good plan ahead, and i know I need to redraw my expectations of what the next few months look like. I'm still so sad about being back here and worried sick about damage to her body.
She has mock (for CAGs) exams Monday (oddly has an AS level this year) and school says to come in for that to get under her belt. Then I think we will keep her off for a few weeks while getting eat plan underway and her strength back up, at least a little.
@SoTiredNeedHoliday I think I'm with you in the despair this weekend. The darkness is unbearable. I think the lack of oestrogen has doubled down on the depression here. Dd has had 5 days of the olanzapine now. I think there is a little less panic ? It's not been the magic pill we wished for but maybe taken the top 10% off the manic self hate. I've heard it takes several weeks to really work. Anything that helps is worth it at this point.
Anyway, back to watching a very odd film tonight ('come away' with Angélina jolie... I'd say don't bother! Was hoping for a real fantasy film to distract us all)... it's just very dark !!)

@SoTiredNeedHoliday olanzapine has been revolutionary for DD1. I took her to A&E because she wouldn't eat, then asked for an NG tube because we just couldn't get the calories in. The Paed consultant agreed, but the Psychiatrist asked to try just one thing first... Olanzapine. She responded immediately and is now eating 2700-3300 calories each day.

Thank you sm701 & Lougle I hope that in a week or so we are seeing a little more positivity in her mood and attitude. We haven't seen much yet but its only day 2.....
DD really wants to go back to school but at her WFH it is not happening and also with her current mood I wouldn't feel comfortable. Though in a way going back to school would be good in there would be less time to be focused on the problems and more time with friends and peers in general.

We've had a nice day, the ED still managed to piss me off a lot though!

The plan today was to see my dad and step mum who live about an hour away and have lunch there and an afternoon stroll.

So foreseen issues were a stroll would not cut it as far as dd is concerned and lunch outside of the home is still a major issue.

Ended up doing a walk before we went which stressed me out as we were short on time and took dds lunch with me.

Unforeseen issue that I stupidly should have thought of was there were scales in the bathroom and I have no idea of dd weighed herself or not 😖

I said to dd tonight that it is like she's in an abusive relationship with the ED, even though it tortures her every single day she still defends it and refuses to let it go!! I got zero response so not sure what dd thought.

I haven't tried the maxijul yet but think I will get some.

Good morning
Well I've had my usual 5 hours sleep. At some point I will need to address my sleep deprivation!
@SoTiredNeedHoliday it is a really great sign dd wants to go to school.
@Girliefriendlikespuppies you saying abusive relationship with ED rings do true. We had quite a break through last night. Dd got really really angry after us trying to get her to have supper. She took so long over every snack and meal yesterday that it was almost the only thing we all did. She said (when angry) she wants to eat everything in the kitchen but can't start because if she does she won't stop. While this is so alarming (seeing her so distressed made me feel like I was going to be sick) it also made me think that at least we know what is going on. I hope the clinic can help her with that. She thinks if she gives up this tight control over food she will balloon . She's never been near average wfh so I think she's lived with this obsessive control since primary school.

I couldn't tell if she was angry at me, herself or the ED. Perhaps all of it. But we haven't seen anger before. Felt like it was a positive development in that she was really honest with us.
I guess it's at the heart of this for most.. taken the ED's control and flipping it into control of her own recovery?

Gosh this is hard.
Hope you all have a good Sunday, fingers crossed

@sm701 I have read somewhere (god knows where I have read so much!) that this fear of loosing control if they eat anything is vv common.
We had a good day yest after our difficult Friday. After a great footie match I had to break it to DD that today’s match had been cancelled. It is awful that I live in fear of telling her such things because her reaction is usually so extreme. In the event she was quite sanguine but only because we suggested another biking trip with her dad which went well a couple of weeks ago. So I have packed them off with morning snack, milk in a thermos cup and her lunch (with added banana which probably won’t get eaten).... DH in a fit of quite overwhelming optimism bought a bag of Haribo to share... if he gets her to eat one of the sweets I will love him forever....
We are meeting her friends in the park later.
Still running up against DH saying she is big enough in his opinion...then she came down in her cycling gear this morning and is still shaped like a whippet... I am keeping going. He knows if she doesn’t eat everything he will be in deep do do.
@Girliefriendlikespuppies the whole exercise thing is so insidious isn’t it. I know yest went well because so was doing enough activity to allow her to eat. I can only hope that keeping her nutrition and weight at a good level will eventually help to break this link.
I found a lot of the coverage of poor Nikki graham so hard to deal with as she clearly was only eating because she could exercise. I am so worried this will be my DDs fate...

@Lottsbiffandsmudge Yes, I've had to completely avoid that news story. Couldn't quite believe that was breaking while we were in middle of our referral to the clinic. That poor lady, and her family. I think because we are getting support for our teens now, we will hopefully put them on a more balanced adult path.

I think hearing my dd say those things made me realise this is 'classic' AN and that the clinic are experts in helping those with these thoughts. Dd is so compliant in every other way I have everything crossed for her doing what she's told by the psychiatrist! A long road ahead but I've woken up feeling strong. Hope it lasts! We are all super strength parents aren't we?!

Glad you are feeling strong @sm701 long may it continue!
I am going to go to church (on line) for the first time in months and do some gardening. The cancelled match is a blessing to me as I have some time with my sons and on my own.
Need some reserves for back to school on Tuesday....which I am kind of dreading.

Lots yep I also hate the feeling that I'm actually enabling the ED to avoid dd having a meltdown. In the end Ystd the afternoon walk was a bit longer than I'd anticipated so dd/the ED was pleased 😕 I also stupidly let her come on the evening dog walk which is only 20 mins but her OCD was really bad - jumping all over the place to touch signs, walking/running into corners to get more steps in and a new one which is jumping onto benches 😕

I think we need to go back to basics and just one walk a day. It feels like she's gone backwards over the holidays 😥

yay to good days and feeling strong and gentle hugs to those having rough days...

Am off to the beach today with DD and then taking her for an al fresco pub lunch - only the second time she's eaten in a 'cafe/pub/restaurant' setting for almost a year. Will be challenging but the upside is - public space = less likely for a kick off...

see you all later!

@Girliefriendlikespuppies it’s so tough... sounds like a plan to go back to basics.
Enjoy the day @myrtleWilson
I am embarrassed to say I broke down in church today as they played my favourite hymn. In some ways the fact it is on line is easier as I am not sure I would cope with it in person although I so miss seeing everyone in person. This pandemic has taken away so much....

@Lottsbiffandsmudge I'm sure that hymn was just for you

We're plodding on. Feeling inexplicably nervous about weighing DD1 at home on Tuesday. Perhaps it's because I don't want to report a 'bad' result. She's doing ok with eating, but we've been to the beach, etc., which exhausted her.

Lots the Nick Cave song Into my Arms came on the radio Ystd and I burst into tears, I think my emotions are all quite close to the surface at the moment.

Hope you have a lovely day at the beach myrtle.

I get really anxious before a weight check Lougle.

We've just had dinner, I did my salmon pasta in a white sauce, the white sauce is butter, flour, ff milk, double cream, roulade, mascarpone and cheddar cheese. I add some stock for flavour, it tastes delicious and dd did well with it. The only trouble is I don't digest fat well (no gallbladder plus a hiatus hernia) so feel ill now!!

We've just done the one walk today although it was long dd seems in a better mood....

We had a row this morning as dd has bought herself a corset 🙄 I told her I strongly disapproved, she said it's nothing to do with the ED or wanting to look thinner yeah right

@Girliefriendlikespuppies I love that your DD thinks she can fly by with 'oooh I had no idea that a device which squashes the ribcage and confines the waist would make me look slimmer.....' 🤣

DD1 was kicking off at dinner time and couldn't possibly eat dinner (just a chipolata hot dog). I held my temper and persevered with getting her to eat it. Afterwards, I said 'right, was that physical ('tummy hurts!!!!') or fear. She said "100% fear".

Lougle well done for keeping on track and getting her to eat, its so difficult
Girliefriendlikespuppies I've seen girls wearing these around recently on top of their clothes like this. Was it something like this or a proper pull it in until you can't breathe corset? Either way it doesn't bode well for the way she sees herself and whats important in life (i.e. being healthy), but if its just fashion at least that's something a little different than thinking shes fat.

girlie - don't make yourself ill to help DD if you can avoid it. Am eye rolling and smirking at the corset conversation! - DD is the opposite, normally wears a t-shirt, two jumpers/hoodies (all oversized) and a mans blazer at the moment. We're trying to encourage her to consider using home as a safe space to wear her other clothes so she can learn to feel comfortable in them before going into the great big world.

Well done on persevering lougle lotts - I'm not a religious person but I do agree with lougle, that hymn was meant to be sung by you yesterday.

sm and sotired I hope you're doing okay. I'm feeling happy and positive this morning - a positive beach hangover I think - always feel better for some time by the sea. Am very lucky to live in the NE where we have multiple fabulous beaches...

I know exactly what you mean @lougle about dreading a bad result on the scales. It feels like I haven't done my homework for a teacher I really like.

And lo, that's what happened to us. She lost 200g, which I'll try to view as a maintenance rather than a loss, especially since she went back to school last week.

Thanks to the vigilance of my younger daughter, we also discovered that she's been back on My Fitness Pal, logging calories. Fortunately for only five days, but it's upsetting that she wants to. She says she needs to know in order to feel in control. Sigh. I do feel we've got a 'classic' anorexic. I've deleted the account and we'll be monitoring her internet use. What was useful was that I could see her weight records from last June - I had no idea what she'd weighed back when this had all started. It was 48kg and she was about 2 or 3cm smaller than now (she's now 43kg). I did the sums and that's about 94% wfh - admittedly she'd piled on weight quite rapidly in lockdown - she was eating big bags of Reece's but it shows she can be 90%+.

I just had a phonecall from the ED nurse, saying that we've missed an appointment that we weren't told about. It must be a mistake anyway, because we had our plan of weighing at home this week and seeing the psychiatrist next week in writing. Oh well.

DD1 is struggling again. Saying I'm trying to make her fat. Refusing part of breakfast and half of snack. I've still managed 1000 calories so far, so I'm not too worried, but it's draining.

No contact from the school yet re. her return.

Sotired ill attach a screen shot of the one she's bought, it's a proper corset though 😕

Myrtle yay for positive vibes! I'm glad things are feeling easier for you.

Lougle I wonder if the ED is feeling threatened so is kicking back a bit?

Valley that's rubbish re the loss and the app, this illness is the pits. Interesting re the weight your dd was before the ED loss and a good idea of what you're aiming for I suppose. How are you getting on with adding fats etc to the food?

I've just given dd what she thinks is a jacket potato with beans and cheese however as she doesn't like the potato skin I've taken to cooking her two potatoes and decanting them onto her plate. It actually doesn't look that much more by the time I've covered it in beans and cheese!!

Dds back to school tomorrow which I'm sort of relieved about, I think we both need a break from each other 😬

Covert spud, I like it!

Am I unreasonable to be a bit annoyed that I haven't even had a 'great news, let us have a think and get back to you!' email from school??

I'm generally a bit irritable, I think. I've been doing Lasting Power of Attorney applications and my DM's was returned because the evidence I sent for fee remission didn't name her. Except it did. So I spent 30 minutes on hold this morning, only to be told 'I don't know...'. Eventually managed to get an email address to enquire. So I emailed and said 'you said this, but actually she is named so I'm confused' and attached a photo of the evidence with her name highlighted. The response 'Oh you didn't send that evidence, which would be fine, so please send it in and we'll process it.' Except I took a photo of the evidence they returned to me which I had sent!! So another £8 for special delivery. This time I added a covering letter and highlighted her name!