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Support thread 11 for parents of young people with an eating disorder

999 replies

GrannyRoberts · 12/01/2024 21:08

Hi all, here is our new thread. I will attempt to post a link on thread 10.

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11
Cantfindthewordsddstruggling · 16/03/2024 17:50

@NanFlanders yes it would be much easier if the extra variables could be removed and paper gowns used.

We’ve gained well but I constantly feel as if it’s a balancing act not to lose or gain too much now we are at the upper end of the range the hospital gave us. Still following the meal plan of 3 meals and 3 snacks per day(although each snack is actually 2 units of snacks if that makes sense). How have people adjusted intake once weight gain is where it needs to be or because they are still growing is their intake altered?

dd tried a fear food under supervision last week. Took the whole appt but she managed.
Sounds strange but I really miss being able to order takeaway if I don’t feel up to cooking.
My eating habits are utterly shocking at the moment and have been so since the diagnosis. I seem to use all my energy and reserves to prep DD’s food that I don’t bother about myself. Think I’ll need to make a conscious effort to have lunch each day.

greydoor · 16/03/2024 21:16

@Cantfindthewordsddstruggling I'm starting to think about this too. My dd is 112% wfh now, and I think this is where she should be, she was always just over the 75 percentile as a baby. I think she has got at least another 5cm to grow, so I'm conscious she needs to have a buffer for that. I think I'm just going to dial back the calories very slightly and see if we can maintain at this level for a bit. We are weighing weekly - blind.

I feel like we might have had a couple of slight wins this week. I've been suspecting that my dd hasn't been eating her morning snack (she takes it to school) and basically have found a stash of them hidden around the house when I've been spring cleaning this week. I just said to her that I think it's quite hard for her to eat her morning snack and so we will just add it to her afternoon shake from now on. She just said 'ok!'. Before now she would have argued with me about it and it would have resulted in a real meltdown about me never believing her.

Then this morning she was having yogurt and granola for breakfast with some fruit, and she said that the fruit was really nice, could she have another bit. That is the first time since the start of this she has asked for anything extra, and even though it was just a little piece of fruit I am taking it as a win. I did not know what to do with my face when she asked for more!!!

Slowlyimproving · 16/03/2024 21:26

I agree that one shouldn't forget they are still growing, and even when they stop growing in length they should still gain in weight for a few more years as per growth charts .
With dC the problem was also that when she started exercising more (with Camhs "agreement") she needed more calories so ended up dropping weight a bit initially.

sammyspoon · 17/03/2024 10:36

Hi @myrtleWilson ... thanks for pointing me to this thread

myrtleWilson · 17/03/2024 11:00

Hi @sammyspoon and welcome - although as ever, we're sorry another parent has had to find themselves in this place.

Is it your first ED clinic tomorrow - I think I read on your thread you have one soon? I'm glad A&E took you seriously and it was the right move to go given the amount of weight your dd has lost and how little she is eating. You'll be encouraged to star a meal plan of 3 meals and 3 snacks a day. Given the low level of intake you may want to ask your ED appointment how much extra a day to give your DD.

As you take control of the eating plan, you'll both probably feel very distressed. The ED will be mightily pissed off and will take it out on your DD who will probably take it out on you. Eva has some good phrases/tips to use to and other posters on here have done the Dolphin course on BEAT (I think its their course) and have said they found that helpful...

any questions or worries you may have do share - there's usually someone around who will have some guidance and support. You've got this - you just might not know it yet, or always believe it.

sammyspoon · 17/03/2024 11:05

myrtleWilson · 17/03/2024 11:00

Hi @sammyspoon and welcome - although as ever, we're sorry another parent has had to find themselves in this place.

Is it your first ED clinic tomorrow - I think I read on your thread you have one soon? I'm glad A&E took you seriously and it was the right move to go given the amount of weight your dd has lost and how little she is eating. You'll be encouraged to star a meal plan of 3 meals and 3 snacks a day. Given the low level of intake you may want to ask your ED appointment how much extra a day to give your DD.

As you take control of the eating plan, you'll both probably feel very distressed. The ED will be mightily pissed off and will take it out on your DD who will probably take it out on you. Eva has some good phrases/tips to use to and other posters on here have done the Dolphin course on BEAT (I think its their course) and have said they found that helpful...

any questions or worries you may have do share - there's usually someone around who will have some guidance and support. You've got this - you just might not know it yet, or always believe it.

Sadly we haven't been contacted by the clinic yet so no first appointment. A&E put the referral through on Friday morning.
So I'm a bit lost in the meantime. I'm trying to get her to snack regularly but that's becoming difficult. I think we should abandon family mealtimes as it's too distressing for my younger daughter to watch her sister cry into her plate.

mangololly · 17/03/2024 12:39

I just wanted to give you all some hope.

This time last year my close friend's dd aged 14, was in hospital with anorexia being fed with an ng tube.

Also this time last year my own ds, aged 17, who suffers with his mental health, had unintentionally lost weight and had a bmi of 15.7.

I came into this group for some help and support, which I received.

A year on and a hell of a journey later, both our children have regained weight and now have healthy bmi's and will eat most foods without any concern.

Wishing you and all your children well - keep holding onto hope.

Girliefriendlikespuppies · 17/03/2024 13:12

It is tricky to know when to dial the calories back, in the end I sort of trusted my instincts with dd and once the ED behaviours had reduced and I knew her weight was above 100% wfh I started slowly reducing how much double cream I was adding to stuff.

I still insist on three meals and a couple of snacks a day though, I think it's probably a routine dd will always have to follow all of her life because of the risk of relapse. It's a bit like a recovering alcoholic can't ever have one drink, a recovering anorexic can't ever miss a meal or snack. The stakes are just too high.

I think dd has around 2500-3000 calories a day and seems to maintain okay on this, she looks about right and her clothes have stayed the same size.

We had a day out Ystd and she did quite well eating a big cheese and tuna toastie for lunch but picked the lower calorie dinner option which is annoying. She had some chocolate for 'pudding' and my mum challenged her on leaving 3 small pieces, dd just mumbled something about it making her feel better 😕

Welcome sammy can you give us a bit of background on what's been going on with your dd? I'm guessing you're right at the start of this journey?

Eyelashesoffire · 17/03/2024 14:18

Hi everyone, good to hear some success stories, welcome to @sammyspoon sorry you're here.

We got to WR a while ago and she started to engage with camhs, having her own appointments 😲 but with the stress of her GCSE mocks and a virus it's all sliding back. Lots of weeping today and I rarely shout but I really shouted and I feel so shit now. I just don't know how long I can keep going like this, it seems never ending 😞

greydoor · 17/03/2024 17:06

Oh @Eyelashesoffire - sorry you've had a rotten day. I have lost my patience quite spectacularly on several occasions, it is so so hard, especially when you've started to get some hope back!! I think the early times are so traumatic that if things look like they are taking a turn that way again it can be very triggering, I know Ive reacted strongly to things and only realised later that it's because I've panicked. Be kind to yourself, you're human and doing a fantastic job. Massive hug xxx

@sammyspoon - welcome to this thread, and sorry you have to find yourself here. I saw your other thread. We were in the same position as you late summer last year, realising over a few days just what a bad state my dd was in. At that time she was avoiding breakfast and lunch, and then eating as little dinner as she could get away with. I had been trying to support her to get her eating back on track for at least a couple of months and it was going from bad to worse. I probably did similar things you've been trying, getting foods she would eat, trying to persuade her to eat a bit more. At that point I was also driving her to the gym in the hope exercise would help her mood, which seems madness looking back, she was so frail and freezing all the time. We finally realised one day when she flushed her breakfast down the loo and we found it.

When we all realised, things became really hard and upsetting quite quickly. An eating disorder thrives in secrecy and so when that secrecy is dismantled then it comes out fighting. We went the route of hiding calories in food, and insisting on 3 meals and 3 snacks every day, from the day I took her to the GP for the referral to CAMHS. Eva Musby book was very helpful, if very sobering, and we did a good course through BEAT called 'developing dolphins' which really helped us understand what we were facing. I know some people find the idea of hiding calories and strict 3+3 bad in relation to the trust and relationship. The rationale behind modern treatment is that the brain cannot do therapy or think its way out of anorexia until it has healed from the starvation. So I decided restoring health as fast as possible was the way to go. Other parents in this thread have done different things, and this approach (which is the first phase in FBT - family based treatment) doesn't work for every family. My DD was around 13 kg lower than the average for her age and height, so there was a long way to go. My DD was very sneaky, she avoided food and discarded it in some extremely creative ways, which I would never have imagined, and she would point blank lie even when confronted with the evidence. She still can be sneaky, even though things are a lot less stressful now. This week I have found stashes of her morning snack (which she takes to school to eat) all around the house.

At the start she was very unwell and was off school for around 6 weeks. She was desperately distressed every time she had to eat, and she was suicidal at times. She was like a different person, screaming, shouting and swearing at me mainly. Telling me she hoped I would die, that she hated me.

She was diagnosed with anorexia at the start of September, and has been on the waiting list for the camhs eating disorder service ever since, with regular health checks. They tried to discharge her last time despite being nowhere near recovered. Physically she's a lot better, but mentally she still struggles a lot of the time. I read it can take the brain at least a year to recover, and so I'm rationalising that we are half way there, and maybe in the summer she might be able to be more of an active partner in the work. But until then I will do it for her.

Hope this isn't all too depressing and disheartening. This thread has saved us, I've learned most things from the experience of the others here. So ask anything you want, and let us know how you're doing. X

lyriccat · 17/03/2024 20:38

@sammyspoon Welcome and I'm sorry to hear your DD is struggling. I hope this thread can provide you with some answers or support, it's been so helpful for me.

R.e my previous post, we found DD has been manipulating her weight (water loading and keys, coins etc in her pockets). So she could weigh much less than the seriously low weight she already is now... over the past week she's managed to increase calories to 1000-1300 a day. Little by little we're increasing. Frustrating because obviously she won't gain anything on this, but it means she can still avoid the EDU admission. Is there a point when a relatively low intake leads to actual weight loss, rather than just maintaining a v low weight as she's doing now?

summertimessadness24 · 17/03/2024 21:14

lyriccat · 17/03/2024 20:38

@sammyspoon Welcome and I'm sorry to hear your DD is struggling. I hope this thread can provide you with some answers or support, it's been so helpful for me.

R.e my previous post, we found DD has been manipulating her weight (water loading and keys, coins etc in her pockets). So she could weigh much less than the seriously low weight she already is now... over the past week she's managed to increase calories to 1000-1300 a day. Little by little we're increasing. Frustrating because obviously she won't gain anything on this, but it means she can still avoid the EDU admission. Is there a point when a relatively low intake leads to actual weight loss, rather than just maintaining a v low weight as she's doing now?

I found my DD was maintaining weight eating around 1,000 a day, her weight only dropped when she was doing 309-500 a day

After hospitalisation and home for a week she's doing 2500-2700 which is the most she's done ever I think

summertimessadness24 · 17/03/2024 21:21

If juice and milk is tolerated then I use up about 1,000 on this alone
So milk 4 times a day and juice 3 times a day
They do this in hospital and we've kept it going
So with a heavy calorie snack I give a glass of whole milk
And biscuits - shortbread biccys have 100 I. One biscuit and my DD can easily eat 4 in a row and Oreo's are another good one aswel

We have mini individual ice cream too like biscoff, Oreo cookie sandwiches they are good
In hospital she has to eat a hot meal AND a hot desert with custard so at home it's easier

I honestly feel like it's reset her going into hospital

She's not happy eating I know and I know she's struggling but yesterday she did 2750 calories ( I track it on a phone and she has no idea) and last week weigh was the first time ive seen weight gain in her ever ( 1.4kg to be precise) im hiding milk and double cream wherever i can !

greydoor · 17/03/2024 21:40

@summertimessadness24 I'm so pleased things have turned around!

Girliefriendlikespuppies · 17/03/2024 22:27

lyriccat · 17/03/2024 20:38

@sammyspoon Welcome and I'm sorry to hear your DD is struggling. I hope this thread can provide you with some answers or support, it's been so helpful for me.

R.e my previous post, we found DD has been manipulating her weight (water loading and keys, coins etc in her pockets). So she could weigh much less than the seriously low weight she already is now... over the past week she's managed to increase calories to 1000-1300 a day. Little by little we're increasing. Frustrating because obviously she won't gain anything on this, but it means she can still avoid the EDU admission. Is there a point when a relatively low intake leads to actual weight loss, rather than just maintaining a v low weight as she's doing now?

I know I keep saying it but your dd needs to be in a specialist unit, when do you next speak to the team? How often are her physical obs being checked?

I'd be really pushing to get her sectioned at this point.

lyriccat · 17/03/2024 22:53

Thank you for the ideas @summertimessadness24

@Girliefriendlikespuppies The team are now saying because she's complied and increased what she's eating, an EDU would no longer be on the table for now. We're still in close contact but I was even told last week that they have "very serious cases" where medical intervention and food re-introduction is needed and if my DD's obs are still ok (getting checked twice a week) and she's able to do this on her own then we should carry on at home 🙄

greydoor · 18/03/2024 07:44

@lyriccat - is there a goal for daily calorie intake beyond where you are now? I know when you met with the team they talked about the importance of daily increases - do you think your dd has remembered that part? I guess I'd be tempted to push it up a bit more to ensure she has to gain. It sounded like admission would be hard for her, can you use that as leverage too?

It's really frustrating about the manipulation when weighing. We try and avoid this by weighing at different days / times and we don't give her any notice. I keep my scales in the boot of my car so she can't weigh herself in between times. I tell her that we are going to weigh her 'now' when she is in my sight and dh is simultaneously getting the scales out of the car - I don't let her go out of my sight until it's done...

Eyelashesoffire · 18/03/2024 13:28

@greydoor thanks for the pep talk, I really needed it!
@summertimesadness24 I'm so so pleased that things are going in the right direction for you!
@lyriccat I read somewhere that FBT has the best outcomes when you get a really good start on weight gain at the beginning, I think something like putting on 1kg a week. I had no idea when I was at the beginning otherwise I would have gone much more 'aggressively' in with increasing calories. In the end my DD only put on weight with 3k calories a day. I'm sorry, this is not very helpful to you, I know that you're fighting really hard for your DD but I think @Girliefriendlikespuppies is right, you need a lot more support. Can they send home support workers to help with mealtimes? I hope things improve.

WoodenTrain · 18/03/2024 18:09

I’m not doing very well with the whole 3x snacks 3x meals. I’ve only managed to get him up to an average of 1000-1200 calories a day and he’s lost 0.4kg this week. It’s difficult when you don’t have professional help. DS has a demand avoidant profile so I’m not sure that me telling him he must eat more is the best route. I have had some success leaving random snacks around but it’s not consistent.

Proseccoismyfriend · 18/03/2024 18:24

@WoodenTrain have you considered high calorie shakes? We told our ds it was medicine to support his organs while we reintroduced food and he's taken to it really well. We have 4 fortini a day (there are loads of different flavours) and that on its own is 1200, we've increased the food and now we are reducing the fortini. Right now I think anything to help kick start recovery and help the brain repair is worth a shot.

WoodenTrain · 18/03/2024 23:53

I’ve tried protein shakes - he’s not keen and finds them a bit filling. He doesn’t like to drink much as he doesn’t like the feeling of fluids in his stomach. I did take advantage of his literalness a couple of days ago and offered him a slimfast shake! He was super keen for it, but it was only 200 calories

Curlyhairedassasin · 19/03/2024 06:41

WoodenTrain · 18/03/2024 23:53

I’ve tried protein shakes - he’s not keen and finds them a bit filling. He doesn’t like to drink much as he doesn’t like the feeling of fluids in his stomach. I did take advantage of his literalness a couple of days ago and offered him a slimfast shake! He was super keen for it, but it was only 200 calories

never had one of them but do they have potential to spike them? Double cream blends beautifully with milk and has loads of cals. Could you decant and refill with something more heavy?

NanFlanders · 19/03/2024 07:16

@WoodenTrain How about Fortisip, Boost or Ensure? They nutritionally complete and are tiny bottles - 2 is a meal equivalent and one a snack equivalent. We got them on prescription.

WoodenTrain · 19/03/2024 17:45

Yes, I need things that are nutritionally dense but small in volume. You can increase the calories of the slimfast shakes by making with whole milk. I’ll try adding cream too!

summertimessadness24 · 19/03/2024 20:24

My DD said her cereal tasted different after I put the double cream in
Tonight I added two tablespoons of it in her milk and she didn't noticed
What ratios do people use when adding double cream ?