Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Prosecco by allowing low calorie snacks and avoiding fear foods this phase will be much more protracted and difficult. I know it's awful but honestly you will be much better off in the long run to introduce the high calorie foods now.

That meal plan looks so low on calories and fats.

If he's going to kick off it might as well be over a massive piece of cake rather than an apple. Personally I'd ignore the semantics of whether it is or isn't an ED, he clearly has developed anorexic thoughts and behaviours through weight loss and the only way to correct this is through food.

Cake, chocolate, crisps, biscuits etc are his medicine and they have to be eaten.

For comparison my dds plan at the point you're at was;
Large bowl of porridge made with double cream

Large piece of cake or chocolate bar

A full length baguette made with tuna Mayo and a generous portion of crisps.

Cereal bar (the highest calorie ones I could find)

Any high calorie dinners, cheesy pasta, fish pie with creamy white sauce, etc

High calorie pudding

Milk and biscuits.

We had to go through the pain barrier to get to that point. Dd was banging her head off the walls, trying to cut her wrists, running out the house with no shoes or coat in the middle of winter, screaming she hated me, screaming she would kill herself.

It was the darkest, most terrible time of both our lives but I kept going, did not back down and pushed through.

As the weight went on the glimpses of light made me more determined to keep pushing forward and now I can see it was worth it and I did save my dds life.

The quicker fear foods are tackled the better imo, the quicker the weight goes on the quicker you'll be out of this hell hole.

Thanks for the encouraging stories of recovery / improvement, goodness that means a lot. It does feel like being in a dark tunnel. The whole thing is just such a mind fuck. I feel like I'm watching it like a fly on the wall and just keep thinking "what?!?!?!?"

I've been trying to aim for lots of variety in meals and snacks, I don't know why but it somehow seems that would be easier for dd. We've also been trying to aim for min 500 calls per meal and 2-300 per snack.

Scrambled eggs made with double cream and butter were a particular win, very easy to eat and don't taste that much different to the ones I usually make. I also made a salad last week with lots of added calorific bits in it. I realised biscof spread has loads of calories in it, so been working that into porridge and stuff the last couple of days.

She's still furious with me and has gone back to her own bed in protest, even though she isn't sleeping as well by herself. Keep trying to persuade her to come back. When we go for the physical health check tomorrow I'll ask for info about crisis support. A soothing box is a great idea, I don't think she would engage in making that with me but she might with other people. It's probably one of the worst things of my whole life watching her sobbing like this.

New day today though. She has had oatcakes and biscof for breakfast, and I need to think about the rest of the day. I've been trying to keep lots of animal fats in the food as it makes sense that's what she needs to help her brain recover.

@Curlyhairedassasin just wanted to jump in on the pacing. I'd say yes it's definitely something you need to crack down on. My DD has been a pacer since she was tiny but this massively ramped up with the ED to the point she was, by the time she was admitted, pacing 8-10 hours a day. It's a huge contributing factor to her weight loss. It started gradually though. We failed to stop it, distraction didn't work, even got to the point of trying to hold her to stop it. It's probably the main reason she went to the psych ward rather than her eating itself, as breaking that cycle just seemed impossible. Now she's more self aware and has some strategies (fidgets mainly) which she uses on the ward. It remains to be seen whether these will work at home though. Hers was primarily anxiety driven but as the ED got worse that spiral of anxiety escalated and so did the pacing. But it's a big concern of the team in terms of calories lost so in answer to your question I'd say you need to stop it. It's so hard though.
@Proseccoismyfriend @Glitterfarti I hope today is better. One meal or snack at a time..

That makes perfect sense, I'm food shopping later (looking forward to the distraction)
The double cream with scrambled egg is a great one

@Curlyhairedassasin My DD also struggled /struggles with exercise - pacing, star jumps and leaving the house to walk long distances. DD felt a strong compulsion to move - she was once sobbing because she was so cold and she didn't want to go out in winter to walk long distances but the Voice was making her. We did manage to persuade her to do Yoga with a YouTube video which met the need for exercise and calmed her down. Counterintuitively, I also got her a gym membership but only for yoga and Tai chi classes which I took her to. (Also, try to keep your DD out of her bedroom or the bathroom - the hospital had a team that used to undo the bathroom lock from the outside when she locked herself in to do star jumps.)

So in contradiction to my earlier up beat Post DD and I have fallen out massively this morning.
She has been ill this week (bad cold) so missed 2 training sessions and a match to recover. Went back Fri and Sat for 2 3hour plus sessions in 30 plus deg heat.
Sunday is a rest day. We were both up early so I asked if she would like a stroll with me before the temp climbs too high and she informs me she is going for a run.
I of course said err no you aren't. Almighty row. I don't trust her. I have to get over it. Etc etc
Damn right I don't trust her. She should not be running on her rest days. Her warped logic is she missed some training so will lose fitness.
This is exactly what she was like when she first got ill. Panicking about losing fitness over lock down. Apparently this is different. Doesn't look that way to me.
She is recovered but some things are still not right. Massive row about fish and chips on Fri (I couldn't face cooking) I made her have it. And no, I wouldn't order in Wagammamas. Always picking the lowest cal thing on a menu (I fucking hate the government for that) she has avoided ribs since her ED. Last weekend we went to TGI and she picked her usual chicken type meal (always second to a fish based meal but TGIs don't do fish!) then I see her scrutinising the menu and she changes to ribs and I am like 'wow we have really got somewhere' and then I clock that ribs are 200 cals less than what she had picked. And then she did order garlic bread and fucking DH ate half of it.
She flatly refused my cakes anymore. She's swapped cornflakes at breakfast for Belvitas. Generally more pre packaged stuff.
My DH thinks I am overreacting. So does DD. I honestly don't know if I am going mad. I feel like I did back at the start when no one believed me and was like 'her diet is fine, stop making a fuss and all will be well' and look where that got me.
I know if she relapses I will have to be strong again and honestly I am not sure I have it in me.
Sorry that was long and prob not helpful for those at the beginning/ in the middle... but this is such a great thread and has kept me sane over many years.

@Proseccoismyfriend I feel like softly softly prolongs the agony for everyone (unless worries around refeeding syndrome) We started off tentatively and the unit said best not to be 'sneaky' w the food but once another mum told me about adding double cream in i was why on earth didn't the unit push this. The sooner they restore the sooner rationality can resurface. We sometimes say 'this was the only one left at the supermarket' to try to prevent DD from latching onto a v narrow range of foods.

@Curlyhairedassasin we were able to stop our DDs physical releases/secret exercise by being w her 24 hour a day for a month only because she didn't do it if we around. We had had a couple of times she disappeared from the house for hours and hours/wouldn't answer her phone (had gone out to walk and walk) and that was utterly terrifying as she was so poorly I thought would be collapsed somewhere in the street. I'm not sure how you handle it if your DD is doing it in front of you

@Lottsbiffandsmudge I would not worry about how DD and DH read it. You have got your DD to this point by being a vigilant mum and far better to catsstrophise occasionally rather than miss a good point for intervention. Try not to focus on relapse and just get her through this hurdle after her illness. You are already v strong!

@ReineDeSaba I am mostly alone with the DDs and her sister has severe ASD/learning difficulties and needs constant support and supervision. I just cannot keep an eye on DD or be with her constantly. The girls have totally competing needs and do not get on at all and the needs of DD1 tend to trump those of DD2. It's shit but it is what it is. DD2 (the one with AN) actually gets a really raw deal a lot of the time as I do not have the time and energy I should probably devote to her. I feel so guilty about it.

@Curlyhairedassasin of course I should have thought of how lucky I was to be able to do this. I was able to stop work/rely on DH for everything else/'neglect' my other DD for a month because she is a teen too.
I want to say to you don't feel guilty but I feel it acutely too. I actually lost it the other day and had a rant because AN DD asked me to organise her a hair cut and in between the plan, trying to juggle work, be a mum to my other DD I feel stretched too too thin and that I need to be able to do it all.I really do feel for you. I hope someone else on the thread has more helpful suggestions for you situation. You sound incredibly strong

@NanFlanders thanks. Will suggest yoga. the constant 'dong dong dong dong dong' what pacing the room is driving me bonkers. 😵

@ReineDeSaba I can tell you, I am anything but strong! I feel a actually weak and pathetic most of the time!

@Curlyhairedassasin but you keep on going.We are all weak and pathetic under the surface. Showing up however bloody brutal this fight is, is the thing that really counts

@ReineDeSaba thanks for that. She hasn't gone running. Her brother has taken her to town to join a uni shopping trip with him and his girlfriend.
Tbh when both my DS' s leave for uni next weekend I am going to be a little bereft.
I have also managed to have a sensible conversation with my DH about my concerns. He agreed with the run ban (thank goodness) but is more sceptical about the food issues. He did agree the extreme reaction to fish and chips was off.... he says he will speak to her later. She needs more cals this season as training has stepped up, not fewer. He agrees with this as well.
Fingers crossed we can nip this in the bud.

@Curlyhairedassasin your situation is immensely tough.
The pacing is an issue. My DD did it. Distraction sometimes worked. Breaking the day up into 30 min segments on a chart and ticking off each one with no pacing to earn rewards also helped a bit. I felt ridiculous trying that (like I was going back to a potty training star chart) but surprisingly it did help a little. She worked towards rewards that were non food and non exercise related. It was tough to find things in that category she actually cared about though. I did also resort to penalising her as well (removing exercise that was allowed and her phone etc) didn't feel good about that but it had to be done.
Other than that just asking her to stop repeatedly. It drove me mad.

My heart goes out to all of you struggling, but I want to say how valuable this thread is. Knowing there are others out there on the same stormy sea gives me some comfort when I feel like I’ve failed as a parent or ballsed up my karma somehow.
I think I’m going through stages of grief, at bargaining today. DD doesn’t have fear foods yet, I think she’s just too young to make that connection in her head, so I’m getting her to eat the little Nutella biscuits between meals (they’re delicious…) and she will eat pancakes with banana and Nutella for breakfast. Lunch and dinner more of an issue, she just keeps saying she’s not hungry.
Need to go into school tomorrow to negotiate how part time is going to work, but of course no one in to discuss with so I don’t even know if anyone will have time to meet up about it.

@Lottsbiffandsmudge saying goodbye to both boys is so hard I'm sure. Glad your DH is able to see some issues that need tackling so you can work together as a team to keep DD well. The rewards chart is absolute genius. My DD has regressed so much at times that moving to toddler phase i would have seen as an achievement !

@Glitterfarti hope school will be supportive tomorrow

Lots I don't think you're over reacting at all, re the restaurants I now ask in advance for calorie free ones menus or I tell dd the options and she doesn't get to see the menu at all.

We went out for dinner last night and I was so relieved at the calorie free menus, it's the difference between a lovely, relaxed evening and an evening full of angst and self hatred 😢

That said I'm also constantly worried that dd is slipping back, I've noticed she's watching a lot of food related videos and started baking again which were both problems at the start of the illness. She just rolls her eyes if I mention anything 'not everything is about the ED mum'

Hmm.

Curly your situation is impossible and the services for both dds should be offering you so much more support than you're getting. Did you get anywhere with claiming DLA for your younger dd?

Re the pacing I know some parents would put their kids in the car and drive them around to enforce sitting. It's a sign her weight is really too low though, the desire to move and exercise is closely linked to low weight as the very primitive part of our brain takes the lack of food as a sign that we need to walk to an area where food is more prevalent.

girlie I put a claim in recently but got a letter back that it takes 15 week min to process. so at least a few months more waiting.

I didn't realise that there is a connection between low weight and the desire for movement but it makes sense. We did not have a weight check for a while due to being away but I am pretty sure there is a drop as the Summer has not been great (esp the holiday) and the pacing is a relatively new thing.

@Girliefriendlikespuppies that sounds exactly like my DD. Things at the start of her illness are creeping back in. Last time I didn't know they were an issue. Now I do.
And my DD says exactly the same thing as yours. It's not the same because she isn't ill..... but as I said to DH, if she loses weight it could easily slip backwards. She isn't back with her brother yet. It feels like a punishment for me. I have no idea if/ what she has eaten..but I guess I put my foot down about running and so I am pleased I did that. This summer she has turned into a proper teen. She is much less biddable than last summer. Much more secretive and protective of phone and privacy. And I cannot tell if its the ED or usual teen stuff. And I guess I'll never be able to tell again.

I hope you've all had as good a day as possible. I feel we've made progress all 3 meals and snacks with minimal fuss/upset. Not as much force needed. I've realised why they aren't great in calories it's because he's a high risk for refeeding syndrome, so we still have a long way to go once regular eating is established. DH and I are doing a little victory dance and feel more confident for tomorrow. I appreciate it could be a crap one but here's to hope ❤️

@Proseccoismyfriend that's good news, glad to hear it's been a better day, and that makes sense about the meal plan.

We've had a day of two halves - this morning was awful again, maximum amount of stress for breakfast and snack. Then we decided to go out this afternoon to break up the day and dd perked right up. Dinner was a bit tricky, but not the stress of this morning.

Hope tomorrow is a better day too, I'm pooped and about to go to bed, this whole thing is exhausting!

Small rays of light for us. I'm so exhausted but I fall into bed and can't sleep, the worry and panic comes back. Can totally see why Ed parents and carers have ptsd.
Sleep well

Sleeping is hard when under so much stress but it's vital to get good sleep. My advice is to try and compartmentalise your ED caring so that once the evening snack is done your job is done for the day - easier said than done I know. Try not to research ED late at night! I take high strength St John's Wort with hot milk at night and then I read or watch something comforting and find I'm knocked out quite quickly. I still wake up in the middle of the night (thanks bladder) and my mind can start to race but reading for a few minutes usually calms me enough to get back to sleep.