Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Did anyone see Gardener's World last night? It featured a young lady with autism who had suffered with anorexia when she was younger and found solace in gardening. It's nice feel good story and I know we all need to hear those so it's worth a look on iplayer x

I think Monty Don had anorexia as a teen, I'm certain I read that somewhere. I can imagine gardening and anything nature related is very healing, it certainly helps my mental health.

I didn't know that about Monty. I just had a quick Google and saw that he turned to gardening when he had depression. He has a very calming way about him. I love watching GW and his doggies.

I love Gardeners world and Monty. Not so keen when it's not him presenting. My garden is my happy place! It was sadly neglected during DDs worst periods but I have pulled it back from the brink..not watched last night's episode yet but will do tomorrow!

Yeah I had a quick Google as well Bagpuss the only info I could see was a celebrity list of men with EDs and his name was on there. I think I read an article about it twenty odd years ago but it's not something he talks about now I guess.

My garden is my happy place as well, it's only small but it's definitely my sanctuary.

Ah I hope he's well now. Lovely man.

Did anyone see the documentary about Freddie Flintoff's bulimia? It was a few years ago now. In Freddie's case I seem to remember it was the media publishing photos and body shaming him that started it off. It was absolutely horrific for him and his family and what stayed with me is that he said he thinks he'll always be bulimic. He has children and as we know ED is often hereditary, I think of him and his family a lot. I get angry when I see photos published of celebs that are obviously meant to be unflattering, it's mainly women that get body shamed but men as well. It can do life long damage and be passed on to the next generation 😥
Why can't people just be kind to each other.

The latest Full of Beans podcast is all about destigmatising male eating disorders. It's a cracking podcast about EDs generally actually.

I did watch the Freddie flintoff doc, I found it really sad tbh as he was clearly still very much in the grips of it and did not want to recover.

DD has been getting more calories in thankfully. We had a lot of tears over not being able to go to athletics. She has agreed to have her three meals a day (currently only selective meals and healthy ones) and refusing snacks but she is having two huels a day which equates to 800 calories which really boosts it up. I have also managed to sneak in milk instead of just water so it will prob be around 900 calories. She did kick off on the weekend after Googling and realising the calories but she has agreed to carry on having them because she wants to be allowed back to her sports. So I think she’s probably having around 1800 calories at the moment with the huels which is a good amount. Hoping once we get to her assessment she will be encouraged to start eating proper food again and not just selective. For now I’m happy she is getting calories to at least sustain her while we are waiting. It’s a lot better than a couple of weeks ago so I’m hoping her love for sports will get her out of this.

Glad you are managing to hang in there whippet

Minor setback here. DD is managing meal plan. We swapped the SS milk for FF. She must be managing about 2300 cal per day. No school (well, online learning), no exercise of any sort and she was gaining about half a KG per week. She is eating but started losing weight again. She is eating the whole plan to a T. ED clinic recons it is her metabolism which may have have geared up to normal. Mealplan is going up again from today but she is so upset. I hope she can manage.

I did not expect a huge weight gain but a half a KG loss in 4 days when she has eaten all her meals and no purging was upsetting. Is this normal once the metabolism switches up?

Curly The time of day or different times of the month, if she's having periods, can affect the scales. Hopefully she'll even out or gain a little by the next appointment. Be on the lookout for any secret exercising. My dd paces in her room so I have to interrupt and distract her.

Whippet are you managing to keep dd away from the kitchen when preparing meals? Once I got dd out of the way I slowly increased portions and added fats. She's allowed some choices into what I cook within our rules but not allowed in the kitchen while I prepare meals. Camhs meal plans aren't great so I found it helpful to sit with dd and the plan they gave us and create our own.

@BagpussSaggyOldClothCat
DD doesn't have periods (not started at all). She is constantly shaking/wiggling her legs and we found her pacing a room the other day too so are now extra careful. Feels like we cannot take your eyes off her at all anymore.

I have to say 5-6 weeks in of this extrem support and I am already utterly exhausted. The mental drain is awful. I keep forgetting things and started making a lot of silly mistakes at work too. As if my brain isn't working properly anymore. It is quiet scary 😲

I take my hat of to anyone doing this for years (but what's the alternative)....

@Curlyhairedassasin - Are you sure your DD isn't hiding food? DD once managed to hide an entire roast dinner up her sleeve in hospital, while supervised. She didn't gain for weeks. She would get very angry with us for 'staring at her' when eating, but still managed to secrete loads. Had to go for eating in T shirts and leggings in the end.

I supervise all meals and I am absolutely certain that she does not hide stuff. I watch her like a hawk. Plus it is hot. She wears dresses, short sleeves and no pockets but I watch every bite going into her mouth and getting swallowed. Absolutely certain.

Curly it's so hard. I do hope your work are understanding. I'm in a much better place now 18 months on than I was in the first few months when I was utterly devastated by what dd was doing to herself, and us. I think you just become accustomed to this new way of life and you learn what their triggers are, what does and doesn't work and how to communicate effectively. This group helps so much to navigate your way through and makes you feel less alone.

@Curlyhairedassasin - That's good! She might be in hypermetabolism then. If you google the Minnesota Starvation Experiment, when people who have been starving start to eat again, it can take more than you can imagine to put on weight again, because the body is using energy to restore its normal functions first. Otherwise, 'meltdowns' (don't know about your DD, but these started for my DD when she started eating again) can use an awful lot of energy apparently.

Curly echoing others - it is so hard and I hope your work is being accommodating - I found no-one really knew the reality of it (why would they - I didn't before it became my reality) so had to really spell it out to them.

Sorry, I know its awful but I did smile at Nan's description of her DD with the roast dinner up her sleeve - I do appreciate this thread for moments of gallows humour or WTAF moments (and when I'm in a good space, I can't help but begrudgingly marvel at the ingenuity of our DC to evade notice - I do appreciate though its easier to marvel once you're over the insane intensity of the grip of the illness...) DD once in hospital hid some food up her sleeve undiscovered by the hcp then coming in to do obs on the same arm..

Nan - hope the meeting goes sensibly and they step back from some of their more bizarre proposals...

thanks nan will look up hypermetabolism. She does have meltdowns but not more than before her admission or whilst inpatient.

How are you and your DD? Do you have a plan in place yet how to move things forward or still working it out? I often think of you both.

How many calories are you getting in curly? For some kids it needs to be massive (around 5000 a day 😳) it's virtually impossible to do this without adding a lot of double cream to everything.

For my dd keeping portions manageable but very high calorie was the key. I think I mentioned before but there is a 1000 calorie porridge you can do (porridge made with double cream and added nuts and seeds) as well 1000 calorie milkshakes/smoothies.

The Camhs ED plans are always too low calorie wise imho, even within the ED teams there is often a fear of suggesting too much food or too rapid weight gain 🤯 Tabitha Farrah talks about this on one of her blogs and it's really depressing tbh.

DD must have managed to vomit frequently even though I thought I had watched her for an hour after meals.

@Curlyhairedassasin hang in there you ate doing great! Helping ED sufferers is all consuming and a long road. Sorry to say.
2300 is still quite a low number if cals. The average teenage girl needs 2200 and in order to gain more weight she's going to need to up the cals as the ED have said.
Unfortunately there are no easy routes. She's prob going to need more than 2300 a day even once she's WR...
I agree that ED team meal plans tend to be v low in cals and also pretty dull. We did our own plan using family meals (we were in lock down so I did lunches too) and home made snacks in which it was easier to bump up cals.
These were all things she ate pre ED so I had that as leverage.
As she hasn't started her periods she is going to need a whole heap of cals once WR to fire that up
And also don't underestimate the amount of also on line school will use. Mental work uses a lot more cals than scrolling on a phone in bed!

@Curlyhairedassasin Thanks. We have a CPA meeting tomorrow at 9 am. DD is now arguing (she's infuriatingly eloquent) for discharge with a Community Treatment Order. DH and I have made a written submission arguing against that - with many thanks to @Girliefriendlikespuppies and others here for suggestions of wording. I'm frankly terrified. I really think a discharge now could be life threatening. If she runs again, she'll be much better informed about how to stay 'under the radar', and in her current physical state without food or fluids the consequences don't bear thinking about.

Nan, I'm perplexed they can even suggest this. Crossing fingers for you and your dd

@Threeyearsalready we are pretty certain she doesn't purge but will make sure now she does not use the bathroom for a good while after eating to double up on that. We have not been too strict on that.

@NanFlanders I really hope the team listen to you. I am actually terrified that discharge could even be an option for someone who is so seriously unwell like your DD.

@NanFlanders this sounds so worrying.
She sounds so very unwell and a danger to herself. I cannot understand how they could even countenance a discharge.
I truly hope you get a positive outcome tomorrow... 🙏