Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

Gosh, I've just looked back and seen it was your link @Lougle originally. Thank you. It's really helpful.

@Bettybarkalot123 I totally get it, I'm the same. We had an absolutely terrible day yesterday for various reasons too painful to outline but which have resulted in yet another weight loss, probably (last week was -300g). We are so near to being a weight where she can go to school part-time that it feels like self-sabotage to be kicking back so hard at this point. I don't know why she can't wait another couple of kilos.

She is absolutely terrified that she's going to be made to be 100% WFH and that this is 'fat'. She says she'd rather be dead than that fat. I did point out that her breakfast wasn't going to take her from 70something to 100% and just to take each day as it comes. She has said some absolutely vile things to me - that I make it all about me, that I'm selfish, that I want her to be fat, that she was fine until we took her to the doctor so we've made her anorexic, that I have no life except for walking the dog. The last feels really true - I don't have much of a life except for walking the dog and constantly pushing food. I've had to turn down work and socialising. I arranged to meet up with my two running friends yesterday and ended up having to cancel last minute as breakfast was such a shit show.

I don't want to rain on anyone's successes, for which I'm genuinely pleased, but sometimes I get a bit down reading what other people can get their children to eat. There's no way on god's earth that DD would have hot chocolate or creamy pancakes etc. Hence the pitiful weight gain.

@Bettybarkalot123 @Valleyofthedollymix we've all been there (and continue to be there!) Betty I can't remember if it was on this thread or the end of the previous one but not too long ago I completely lost it with DD - I physically roared at her (made myself hoarse in doing so). It shocked both me and her. I would imagine there is not a single parent on this earth who in trying to cope with this pernicious, damaging, destructive illness who hasn't lost the plot at some point or another - whether anger, tears, utter dejection, absolute desire to run away or sometimes just coldness - I know I've experienced all of those and probably more.

DD's private therapist (she started seeing her again a couple of weeks ago after relapsing and re-starting recovery) has intervened with the NHS as she is so concerned about DD's mental and physical health. Particularly around her dysmorphia and her hallucinations related to dysmorphia. She (therapist) has rung GP to make GP ring DD, checked in with us about DD's conversation with GP, contacted GP again and we're now expecting another GP call today. The outcome will hopefully be an expedited assessment at Adults affective disorder team (currently in queue for 8 week wait list for assessment). I do worry about navigating through Adults - especially in light of @Bluebuddha10 experiences but am thankful that we have a therapist who is willing to go in as professional to professional.

DD really wants to get better, she is fed up being sad and wants to be happy but there still is such a gap between her wants and her capacity to make it so. It makes me so sad to think of her brokenness

Oh @Valleyofthedollymix our situations and daughters sound very similar. I can see her not returning to school in November at this rate and it breaks my heart as I do think she would improve if she got back there and I think it would give me and her dad more strength in between meals/snacks to fight it with her. As it is, we’re all cooped up at home day after day.

Like you literally all I do is walk the dog and food shop. I think about food/snacks constantly. Like our poor daughters do as well.

That’s the thing she does eat reasonably well. For example last night she ate a huge jacket spud with over half a tin of beans, admittedly no cheese or butter but if I’d added these she wouldn’t have eaten any of it. Butter and cheese are huge triggers for her. So much so, that if I add them to a meal and she can tell or tastes it, that whole meal then becomes a fear food as she can’t trust what’s in it anymore. She had custard and a banana for pudding and bedtime was a hot chocolate with cream (she doesn’t know about the cream) and a fibre one bar. Yet she still doesn’t gain so much as a gram. I’m worried about purging but I’ve seen no evidence at all and I think it would show in her bloods which apart from a minor abnormality relating to her calcium levels were all fine.

Have you been on a Beat session ?? They’re really good. I wish I could give you a hug and I wish I was stronger than I am.

Hi all, I'm trying to read through and catch up on all your situations (in between work!), sorry if im a bit behind!
But @DarkBlueEyes just wanted to say feel for you, had so many of those times where everytime my daughter was discharged, she would revert back to eating the way she wanted to. Am surprised you have not been given a food plan by dietician to stick to? And @NCTDN my daughter also has a long list of fear foods and is really restrictive. I rarely sneaked any fats/high calorie ingredients into her food without her knowing though, because if she gained alot of weight she would assume it was from the current plan and restrict even more. 8+ years on and she still measures/weighs everything and still has a very restrictive list of what she is prepared to eat. She has reluctantly agreed with her consultant to try and get to a BMI of 15, to avoid admission, would still be massively underweight but at least a bit away from the danger zone. Depends also if her bloods improve.
@myrtleWilson the adult services are very disjointed and communication between the various services that my daughter needs is really poor, however there are one or two really good clinicians that does seem to be more on the ball. Just to give you hope. But it was better when she was in adolescent services.
And just to also say I have also lost it on many occasions, handled situations very badly at times, but we are only human going through incredibly stressful and emotional times with our children and their EDs. Be kind to yourselves x

Hey Dark, great to hear from you. Wow, you sound like you’re completely nailing it! There’s not a chance in hell my DD would eat half those things so total respect. Expect some kick back but stay tough and keep your nerve. You are in control now, not the ED!!!

Betty Oh I’m so sorry that you’re feeling so dejected. It’s is soo so hard. The hardest thing I have ever had to deal with. But you just need to keep on keeping on. We don’t have any other choice. Keep at it on the food front and you may well find that you have a spectacular gain the following week. There is so much repairing going on in their bodies that we can’t see so all that great nourishing food you are getting in to your DD isn’t for nothing. It’s what she needs.

I have said some truly horrible things to DD at times. I think at one point I said that she’d ruined everyone’s summer and that she’s ruined my life. Don’t beat yourself up about it. We aren’t robots. We have feelings and emotions and these are turbulent times we are living through. It does get better. Hold on to that.

Valley I’m the same ref seeing what other people manage to get their DC’s to eat. But I think as you have quite rightly pointed out before, they are all individual! And we as their Mum’s know how far we can push them in terms of what we can make them eat and what just isn’t worth it. There’s not a chance in hell I could get DD to eat pancakes with Nutella and cream and maple syrup. Or a hot chocolate. Or even sandwiches. But I can get her to eat steak & chips once a week. This is what works for us.

They get so hung up on the WFH don’t they? DD used to endlessly try and draw me in to a discussion around what wfh I would stop at. It got to a point where I banned her from talking about weight and the actual numbers as it just went round and round. She seems a bit less fixated on it now actually. Although that’s probably because we seem to be working closer to maintaining now.

That's really good advice @Rollergirl11, the conversations around WFH are so circuitous and pointless that I need to shut them down before they get going. And you're absolutely right about them all being individuals. The thing is I don't even need to give her super high calorie foods - she'll put on 500g a week if she follows her very reasonable eating plan, which is all fine, I'd just love a quick fix of 3kg weight gain to get us out of the woods.

@DarkBlueEyes really really good luck. We've not had a hospital stay but I imagine it's daunting and terrifying when they come out.

@Bluebuddha10 thanks for coming back on and telling us how it's going. Sorry it's been such a long haul.

@myrtleWilson I've screamed so hard at her that my voice was croaky for days. And then she said to me, 'you say I'm the mad one' and I thought, god yes, I have been driven mad by all this.

I totally get the posts about your child not eating certain foods. I've just made tea and debated putting some cheese in the sauce but decided it was pointless. DD will know and then won't trust me. Like others, cheese and butter are no nos. The facts they are called fats really doesn't help.

I'm sorry you're struggling Betty I have definitely been there with dd, it's a soul destroying illness. Dd has also said vile things he to me along the lines of I'm abusive, my life is pointless and I'll die alone, she would hate to turn out like me etc etc.

I have also lost it with her numerous times.

I hold onto the fact that it's the ED talking and I know deep (deep) down she does love me and one day will appreciate what I do for her (fingers crossed 🥴)

I liken it to dd being in an abusive relationship, she has convinced herself that she loves the ED and the ED is helping her. Therefore she can ignore the absolute shit show going on around her. She has also said she'd rather be dead than gain weight 😐

I know I'm fortunate that dd will eat the high calorie foods, the amount of rules and weird behaviours around food are still ongoing and show no evidence of buggering off yet though unfortunately.

Definitely avoid all conversations around weight or wfh. They're not rational and it will drive you mad!!

We're just back from a college open evening, dd is looking at doing an animal management course next September. It looks absolutely brilliant and will be perfect for her. It will however also mean long days (leaving the house at 7.30am and getting home at nearly 6pm) as the college is a long bus ride away. She needs to be much better by then to be able to fuel herself....

Hi all. Another reasonable day here except the last snack.... she had a strawberry milk and did t want it. So basically necked it down and then felt really ill with reflux. Poor love in tears saying she can't handle the volume of food, she has less in hospital (but true). I don't feel I can back off though. Has this happened to anyone else?

That's brilliant she's doing so well, definitely do not back off dark. She will be getting a lot of push back from the ED but stay strong and firm. My dd used to do the eating or drinking really quickly thing, it's like she just wanted to get it over and done with. Keep going.

My dd still hasn't gone back to eating the same amounts she did before she got covid (a couple of weeks ago) so I'm now in this weird situation where I'm giving her slightly smaller portions so she will eat more of it so I can then start to increase the portions again 😩🤯 I really need to book her in for a weight check as well but I bloody hate them!

@DarkBlueEyes we had issues with volume of food. When DD was at her most restrictive there were so few foods she would eat that trying to cobble together the right amount of calories was a nightmare. At the time she'd only eat fish, butternut squash and vegetables so you can imagine how much volume I needed to get on a plate for dinner. I think even DD realised how much easier it would be to face a smaller plate of food which equalled the same calorie content - but that meant tackling her fear foods which was, not going to lie, really really tough.

@Bettybarkalot123 if you have the time/energy could you share a bit more about the red balloon blue balloon?

Also, someone mentioned Aldi/Lidl puddings please do share your recommendations. Dd has an ice-cream for night snack, or a crumble & custard for pudding but we don't have much variation so any good calorie content puddings please do send my way!

@myrtleWilson - sure.. I think I’ve copied the link to the YouTube video here. It’s a metaphor that they use in Maudsley training methods. If you can’t use the link just google. Jenny Langley red blue balloon.

Also someone on the FB group shared a good video and it explained about how FBT was all about empowering parents to make decisions about their children. We know them best. She explained that a parent may for example say.. I’m taking my child to Disney next week, they will eat there and be happier, even though they’d just come out of hospital but it wasn’t about saying no to that parent it was about explaining the risks but supporting and empowering them with the decisions they make and helping them once they’d made that decision to do it safely and with support. She said sometimes it didn’t work out as the parents expected and that was fine and could be fixed but often it did.

This resonated with me as at the moment I feel that camhs aren’t really empowering us, we know our daughter and would never do anything we thought wasn’t in her best interests but we honestly believe that part time attendance in school, with us bringing her home each day for lunch would help her and it would help us be stronger for her… and if it didn’t we would stop and she would be home again.

Thank you all for your help and support i can’t tell you how reassured I am by the advice you’re giving and sharing your own experiences.. thank you.

@myrtlewilson the puddings at Lidl are really good. The sticky toffee pudding is around 400 cal for quarter of the pack and it microwaves in 2.5 minutes (very yummy) and I add cream too. I also bought the chocolate fondants - two small puddings in the pack at 407 cal each, plus cream. 30 secs in the microwave. They also have profiteroles and tiramisu, as well as cheesecakes etc - copies of the Gu ones I guess. Plus at Christmas they do a biscoff cheesecake which is in the frozen section and is off the scale absolutely bloody fantastic. They also have pots of creamy yoghurts at around 250 cals and the layered greek yoghurts around 180 cals, plus the full fat greek yoghurt is delicious.

I tend to shop there mainly and top up at Waitrose for all the things I can't get, but it's good. They do a combo pork/beef mince for ragu and it's 28% fat, plus they do roast in the bag chickens which are good, as are the meatballs and southern fried chicken.
By the way a massive thank you to whoever it was who posted that website that generates a meal plan for a calorie level - that's just brilliant!

We;re shortly off to CAMHS for a supported meal. DD is on the enhanced pathway so they obviously see her as very high risk for tier 4 inpatient admission. I hope it doesn't come to that. She's gained 2kg and is now 79.4 WFH so we are trying to aim for school after half term. She really needs it.

Thanks @DarkBlueEyes and good luck - the meal support we had at home was great as it gave us a) a break and b) some tips to use...

Thanks too @Bettybarkalot123

@DarkBlueEyes that sounds great, I’m glad your daughter is heading towards a return to school. Great work!
I wish we had anywhere near that support.. we’ve just had an email update from the specialist who had a call with our daughter yesterday and he’s called her a completely different name. I’ve had to email to check we are actually talking about the right child. This isn’t filling me with confidence.

Bloody hell Betty that's bad and probably a huge confidentiality breach 🙄

Well I've just got back from Aldi and did some research on their puds 😁 like a complete loon I've taken some pics of the ones we commonly buy. I tend to steer away from individual pots if possible as think I can give dd a larger portion from the ones in a tray. They often say a portion is a quarter however dd easily gets a 3rd or occasionally half.

I also like their nut bars which are 207 calories each for a small bar and pass the appear fairly healthy test.

The nut bars...

Honestly @Bettybarkalot123 listen to your instinct. We had a private psych for DD1 and I had doubts from the beginning. I wish I'd listened.

Thanks! We had a private therapist too and I wish I’d stuck with her. She was brilliant but you know you put your trust in the NHS don’t you.
Pretty disgusted with them to be honest. The first email was from the ED nurse who sent a long email and then referred to my DD as the different name. Then a separate email from the clinical lead who had spent an hour with DD last week referred to her incorrectly throughout his separate email.
When I emailed them to check we were in fact talking about my daughter and not someone else’s they both apologised and said it was a typo!

2 different professionals making a typo?? Did they both use the same name, or different names? Either way it's just inexcusable. A social worker once did that with DD1 and it put them way down on my respect list. It's the most basic of errors and so fundamental.

Both the same name. A completely different name to my daughters.

If they both used the same name, I think I'd make an official complaint/concern and ask for it to be investigated. It's a mighty coincidence that two professionals would make the same name error as typo. That means you have to consider whether the content of the emails were actually relating to your DD and her situation.

I agree with lougle re a complaint. Did it include a surname?

@Lougle exactly. I did email them both straight away and asked them to confirm it was indeed my daughter they were referring to and not another child they were treating. Both apologised and said it was a typo and they should have proof read their emails.
It really undermines my confidence in them.