Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

@Roolet12

I've let DD1 eat lunch in bed today. She was yelling that she wasn't having lunch because she didn't want to move.

Thnks @Lougle. And lunch in bed...
why not...the more rest the better. Good she'll do that, capitalise on it.

lougle well done for early morning pancakes
Roolet sorry this morning was so hard

Lil zoo is determined to try some pm sessions next week as loves core subjects.im scared as I know she unlikely to eat until after school...any ideas/tips/things I should be worried about?
Past four days she been saying how cold it is when she's not in bed working/editing.we do live in chilly house,but she's never complained before,hates wearing slippers and has purple/grey feet when comes down to eat
Last couple of days she's had a soy milkshake carton for breakfast
2mini wraps with lots salad veg and tuna/lean corned beef/ham/hummus at lunch
Dinner has been hummus or nush dairy free cream cheese with lots veg sticks to dunk and a pitta.
One day had crisps,another had couple Oreos
This seems to be standard amount that agrees to eat

And a bottle of flavoured water(1litre)

Sending solidarity to all! Big fan of the nush cream ‘cheese’ here too - need to go to local shop and get it tomorrow. No dairy is a real challenge with getting calories in - my shopping cart is so full as there are so few calorie dense things that are acceptable. School seems to be going ok - mood fine and being honest about what is eaten. Haven’t had afternoon snack yet and is way down on 1400 should be after lunch but I’ll have that battle in a minute. Walk to school is pretty hilly so should be adjusting for that too. Having lots of angst with younger sis (12) at the mo - feel terrible as I just have no capacity to deal with her teenage behaviour, which I’m sure in part is prompted by my lack of attention/capacity, and we end up clashing, then I feel awful and usually try and make it up to her with bloody food (she is naturally slim but very fussy and would eat 100% sugary crap if allowed)! Such a minefield, as it all is.

Has anyone else’s child had chilblains? D seems to have developed Reynauds in last year (since being so skinny), right now even though partially weight restored D’s fingers are covered in them :(

Well DD survived the week. HoY called to say her friends (she has 3 close friends) had been to see her a couple of times and were a bit upset because of some behaviours of Dd (running up steps, taking unnecessary long routes to lessons etc) and they are worried about her. HoY has explained that them feeding it back to her so she can feedback to me is the end of their responsibility for DD all though of course they will still worry. They confirmed to HoY that DD has eaten snack every morning and even said no when someone asked to share it! Which is good news.
The activity behaviours mirrors that we saw at home with uneccesary stair climbing when ‘forgetting’ items for on line school and a total inability to sit down so hoping that it isn’t expending more cals then the home behaviour. The weigh in on Tues will tell....
She is so lucky to have such amazing friends esp as the illness isolated her from them for the whole of last term
So aside from cup cake gate, PE gate, hail gate (her football got cut short due to a hail storm and she got so caked to the skin and did not warm up for 3 hours) it has been an ok week....
My nerves are shredded but HoY has been amazing - large bottle of wine for her at Easter I think!
Lunch in bed sounds ace!
Sorry to hear about milk on skirt at least it’s Friday so time for it to be washed?
Good Friday evening vibes to everyone.

@Lottsbiffandsmudge you've got to give her a chance to prove herself without jumping in as soon as she deviates from plan, so I think you're doing the right thing. I bet it takes nerves of steel though!

DD1 hasn't been the most pleasant, but she's eaten 2 meals and 2 snacks so far. Domino's pizza for dinner, so we'll see how she does with that.

Yes my nerves are shot.
Fingers crossed for pizza as sounds like she has done well today!

Pizza unsuccessful. Teeny tiny personal pizza, 132 calories per slice. After 1 slice she was 'absolutely stuffed and couldn't possibly eat more.' She says she is feeling sick and we just have no idea how hard it is to have an eating disorder. She just needs a break.

So I told her that was fine, but she has to have another chocolate brownie for evening snack because she's 200 calories short of her target for today and 2580 short for the week so far.

Ami not chilblains but my dd has permanently freezing feet and hands, it's normal for her to wear 3 plus pairs of socks now and she's still cold 😕 I keep the house warm and bought her some ultra thick socks from Go OutDoors.

Lots the exercise compulsion must be so hard to manage, is your dd gaining weight still? My dd still walks the long way round, does unnecessary steps and runs 'to catch up' at any opportunity but is able to relax on the sofa for long periods of time now.

So my dd survived her first week back, not feeling very confident that she's eaten well at school but weigh in next Tuesday will tell...

We had tears last night as I think she was exhausted and found her last lesson hard work, she did allow me to comfort her though which was amazing! She's literally recoiled at my touch for months so to give her a hug felt wonderful. Her AF arrived this morning which might explain the tears though!!

lougle sorry the pizza was so difficult.did she have the brownie in the end?

Lil zoo has gone overnight for fortnightly stay at her big sisters with D's
Dd1 makes dinner then places on table in bowls to help selves as she wants to cook "normally" (rather than just give her cold food she knows will eat)and for D's social /dexterity skills(ASD and a messy eater)
First few attempts were tricky.shes learnt the importance of TV/music if expects her to eat anything.she feels lil zoo portions are tiny compared D's(he's 18 months older).she makes her soy hot chocolate first thing knowing lil zoo will drink it to be polite(has refused baconrolls and vegan pain au choc/croissants..
They were having Bolognese with penne last night(D's and spaghetti isn't pretty)and garlic bread(another thing she loves)
Will find out later how she got on
They did a snacks tea one week whilst playing games which worked well.she ate half tub guacamole with lots tortilla chips /pitta and various veggies,few sweeties and some vegan chocolate.i think the fact doesn't go often makes her try harder to "fit in" if that makes sense?

Wow @Stilllivinginazoo that sounds like a work in progress. Does she enjoy the visits?

DD1 did eat the brownie. She is vile today. Angry and hostile but eating the things I give her.

@Girliefriendlikespuppies the exercise compulsion came first then the food issues. My main worry is that DD only eats because the exercise ‘allows’ it with her AN thoughts. She will sit but only watching TV with me. Otherwise she stands. She has stopped (I think) the covert stuff (180 tricep dips a day, burpees etc) but cannot tolerate a reduction in her ‘plan’. Which is why we had a major meltdown over PE being stretching. I have no idea if getting to a healthy weight will help this or not. Quite possibly not. She is gaining weight well but first week of school may put a dent in that `I am not sure.
I think if she had been banned from exercise at the outset by the ED team we would have had much more trouble with food. But maybe we would have cracked the compulsion. But I really don’t know. It worries me a lot that she will get weight restored (which she is heading for) but never deal with the exercise issues and then she will get injured or ill or something not be able to train and then the food issues will all come back. Anyway I think I need to just concentrate on weight restoration and managing school and a return to social sport and deal with the myriad other issues (fear foods, eating out of the house, coping with unexpected issues that affect her exercise plan etc etc) down the road. It’s so hard at the outset of diagnosis etc because you know nothing about the illness and rely on professionals who may or may not have decided on the best route once you do all your own research and reading. I know of hardly any suffered who has been allowed to exercise through weight restoration. I look back at her when she was 77% and doing all this activity and freak out about what could have been...esp with the undiagnosed heart issue we faced just over a week ago.
The GP surgery have yet to respond or even acknowledge my email complaint about that on 1st Mar or my follow up by post on 9th Mar. They are so useless.
Hope the visit goes well@Stilllivinginazoo
Great news about the physical contact @girlfriend

lougle once she's actually there yes.moans for few days before doesn't want to as knows will need at some point use the loo and have to eat.they normally watch a film and chill Friday night then play board games Saturday morning(cluedo is current favourite>.today they've raided dd1 extensive crafting collection to make mother's Day cards

Hi all,
hope you're all ok after the return to school!
Do any of you have any recommendations for private services for DD?
So hard to find

Well she's discovered likes lemonade
Had handful penne with heap tbsp Bolognese and a piece garlic bread plus few random.foamies
No breakfast and asked lemonade rather than hot chocolate
Has,however,just eaten 2wraps with salmon,spinach watercress and rocket.bag pea crisps and some jelly sweets

afewtoomanychoices what type of help are you looking for specifically? With dietician? Psychiatrist or an intensive day program with everything?

I've just enrolled in this online seminar / parent workshop event for ED parents: Getting started & helping your child eat

Has anyone been? She does other workshops too

Lots i think I would share your concerns re the exercise compulsion, do the Camhs team believe it will naturally calm down with weight gain? I'm really surprised the team didn't curtail it more initially, do you think your dd enjoys the exercise or is it more the ED forcing her to do it? With my dd she readily gave up a lot of the exercise she had started doing (online workouts, running, bench press ups etc) and it was obvious that is was completely ED led rather than her enjoying it. She still insists on an hour long walk but I can live with that.

Not a bad day today, dd was was eyeing up some posh chocolates I was given by my dad for Mother's Day. I told her she could have some and I could see she was really conflicted, in the end she asked if she could have some for pudding. We agreed if she was having them for pudding she had to eat 7 of them which she did and even seemed to enjoy them!

I keep mentioning to dd the idea of giving herself permission to eat in the hope she will start to think about it.

Wow chocolates that is good going! I think the ED team think it may settle with more normality around her sport and more weight. She is starting to not want to do the stuff in the field with her dad. I think because she has had a taste of football (she played with the boys at school this week) she is missing it more than ever. It is so hard to know which is compulsion and which is her missing football. Although clearly the standing and running up and downstairs is compulsion.
Nearly all of our battles are around exercise (once the olanzapine brought the anxiety about breakfast under control) and I am sure e AN voice is very strong.
Both her clubs look like returning as soon as lock down is relaxed on 29th Mar and I think we need to take that opportunity to incentivise sitting and cutting out all the unnecessary stair climbing. And also getting rid of all the core, ladder work and field work which will be replaced by sociable coach led stuff which is much more healthy and much less intense.
DD was eyeing up our 10 pack of cream eggs earlier. I offered her one. Flat no.

My dd will only have a treat such as sweets or chocolates instead of something else lots I let her off her yogurt Ystd for some sweets her friends had given her. I'd love it if she would allow herself something extra but we're not there yet.

Has anyone filled in their consensus form yet? I wasn't sure whether I considered myself my dds carer or not?

DD1 is getting worse than I thought. Pre-diagnosis she would always ask for a rustler burger. I didn't often allow it because it looked a bit grim to me. Tonight, she was really resistant about food, but reluctantly accepted the idea of a rustler burger. Point blank refused pudding options at the supermarket and refused to discuss breakfast tomorrow.

We've just had dinner and she's had a small glass of coke and ⅕ at best of the burger. Complete meltdown.

With her BP being low in the last few days, too, I'm quite concerned, although yesterday I got 2000 cals in and today we're at 1900 despite the dinner fail. I'm going to wait a while, now that she's gone back to her bedroom, then take her blood pressure. If her blood pressure is still low, I'm going to call 111 and ask for their advice.

@afewtoomanychoices I think you mentioned before trying Ellern Mede - afraid that was my only suggestion, along with Newbridge House which isn't private but looks excellent, though prob a longish wait too ( wld need your local CAMHS for referral). Hope you have some joy contacting places...
@Girliefriendlikespuppies chocs, wow, that's brilliant. We're a long way off that yet . It strikes fear into DD. I've tried to reason with her that it's made from a bunch of ingredients she eats in other forms eg milk, sugar, butter ( ok maybe not the cocoa powder..) but i guess you can't reason with A.N.
@Lougle try not to panic. 1900 cals is a decent amount still - could she be reacting to the supermarket trip at all? How low is her bp? At our worst point, on only about 750 cals, DD's used to drop quite alot in the eve (to 70/50 area, HR 40-50), CAMHS were concerned but trips to A & E resulted in us being sent home after ecg and other checks. Obv if you're worried though go with your instinct.
Thoroughly sh#t day here, glad to see the back of it. 2 huge blow ups and I'm ashamed to say i totally lost it during one of them. Think it shocked DD. Last thing I want to do is add to her guilt over stuff - she then kept apologising - but the deep hatred I feel for this illness, gets overwhelming at times.

Oh, sorry @sotiredneedholiday, meant to say i havent booked on to that course but Ive seen it, sounds really useful. Think Evs M talks a ton of sense - just never find it easy to translate into meal times at home! Hope it's worthwhile.

@Roolet12 sorry you've had a tough day. DD1's BP was a bit better tonight, so didn't call 111. Not sure if it was a reaction - anything could be these days!