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?

I think you can still use a 'partnering' approach, but there will be hard lines and soft lines.

So 'would you like a smoothie or pancakes for breakfast?' - partnering/soft line - fine.

'Would you like breakfast or not?' - No. Breakfast is a hard line.

So best laid plans and all that…
She chose the ‘muesli’ for bfast - recipe I got from here with oats, seed mix, ground almond, cream, apple juice, grated apple & maple syrup. She liked to sound of it but One mouthful and grimaced so resorted to creamy porridge with apple and mixed spice. She said it tasted great but after literally one mouthful claimed to be full. Had glass of apple juice though. I did encourage but there were tears and ‘but you don’t have bfast’ - I don’t, I eat about 11. No way coukd I stomach a bfast at 7am!
Do you ladies all eat with your DC? And the same foods?
Anyway bloods taken. Called surgery and have a phone appointment with the nurse tomorrow am as I want to know if referral actually done (without any obs & ECG). We have a home sphygmomanometer so can do sitting/standing obs tonight and give to the nurse in the morning & push for ECG.
I’m going to check out the Eva Musby YouTube videos and books. Seems a few if you recommend her. Although I’ve read the whole thread it’s not going in. I’ve just paid attention to the comment that weight loss / malnutrition CAUSES anorexia not the other way around. I’d read it but it hadn’t sunk in.
Thank you all so very very much for your support and advice.
How are you feeling after being discharged girlie Im imagining very mixed feelings?

Do you think she would cope better with a smoothie? If you add posts oats or ground almonds, and double cream, you can get a single glass of smoothie up to around 700-800 calories.

Yes. She likes smoothies. How do I make them to keep for next day though? Max she would have is 150-200mls. They always go brown in the fridge. I made a smoothie yesterday using avocado (hates bananas), frozen berries, cream, seeds and maple syrup. It’s was lovely but a bit thick so she had it as a smoothie bowl, which avoided diluting it further with milk/cream. She decided it needed more flavour so added peanut butter - which she then said made it taste hideous. Her sisters had eaten the remainder. I could definitely make that again. But either use tiny quantities as it makes so much or encourage her sisters to have it too. Thing is they’d have a pint each and her 150ml 🙄

I didn't eat breakfast but since DDs diagnosis i have done. In the early days I ate every meal with her and piled on the weight. I didn't feel that I could tell her she needed a pudding and me then say I didn't want one. I resigned myself to the fact that extra weight on me was worth it for her recovery. Breakfast is definitely the hardest meal for her.

Complex** I think you're definitely going to have to start eating breakfast and snacks and puddings - sorry!! I think most of us mums gained weight especially in the early days. I gained around a stone (the same amount as my dd did 🙄) I honestly don't mind as getting my dd well was the priority.

I think this illness makes you reevaluate your own relationship to food and if you fear weight gain yourself you'll struggle to help your child overcome their fear imo. I also think of healthy/unhealthy foods in a completely different way now!!

That said now my dd is much better I've cut out the snacks and puddings as I can't afford to keep getting bigger clothes!!

I think you will have to get much stricter with her complex no breakfast means no school - end of discussion.

Thanks for asking re being discharged, it's weird really, a bit no man's land. Dds still got so many struggles with food but then her mood is good and she eats well (well the meals I see her eat.) I keep hoping this magic switch will just flick in her brain and she'll be ready to let the ED go and move on with her life...

How’s everyone doing? A few of you have mentioned trying to get counselling now that they are recovering and some trying CBT. My DD1 had DBT (not CBT) for her MH issues and I’m wondering if that would be more relevant to your sons and daughters. It may not be, but thought I’d suggest just incase.

DD3 ended up totalling about 1600 cals yesterday, so similar to the weekend and a vast improvement since Thurs & Fri.
She had a whole avocado on one slice of toast with butter for bfast this morning and a few pieces of her gnocchi. No issue whatsoever. She happily packed her lunch bag with pesto gnocchi, extra cheese, a donut for pud, hula hoops, flapjack & pom pom bears for snack. I know pom pom bears aren’t very high calorie but she loves them and if I can get her used to having 3+3 initially I can then up the cals. Whether she actually eats all that we will have to see.
Spoke to the nurse at the GP surgery about an ECG - I insisted nice guidelines say she needs one for the referral. She had no clue. You’d think there’d be a protocol to follow wouldn’t you? Anyway, I’ve managed to book one for tomorrow.
I’m umming and ahhhing about telling school as I’m very concerned they’ll over react and charge in guns blazing like they did with DD1 with the MH issues (not ED). Their reaction set her back massively. I’m meeting a friend later today whose DD has anorexia and attended the same school last year. Be interesting to see what she says.

Just before Christmas we realised by DD(15) has anorexia - had suspected it for a while, but she confirmed that she feels very guilty when she eats. She is 44kg and 166 cm. Went to docs the next day and she is on a waiting list for the ED clinic at Alder Hey - expected to be seen on 17 Feb. We've done lots of reading and tried what we understood of tray-based/FBT/Maudsley type re-feeding - arguing for 2 hours to get her to get the food in her, but now it seems to have backfired and nothing will get her to eat 'fear foods' (tried till midnight to get her to eat even a 1 inch square piece of toast and peanut butter) and she is cutting out things that used to be ok, like orange juice, tea with milk or a small baked potato. GP advising now we don't try to persuade for more than half an hour. She is currently on about 400 kcal per day - small bowl of branflakes for breakfast, no lunch (though I always send her in to school with a packed lunch), and perhaps an egg and toast for tea. I've hidden the scales, as she was weighing herself obsessively. Also she is going to a Young Person's Counselling drop-in. But her weight is dropping quickly. She looks awful, is freezing cold, and constantly exhausted. Her mood seems very low. Really don't know what else to do.

@NanFlanders didn't want to read and run, but that sounds very familiar to me, we were in the same situation in early November. First thing that sticks me is pull her out of school. She just doesn't have the energy required. Download Eva Musby's book and try to follow her instructions about getting her to eat.

It's very difficult waiting for treatment, you're in a kind of no mans land.

Other posters here are more experienced than me but basically no food=no school/going out/seeing friends, etc

*Nan anything less than 500 cals a day is a A&e trip. Please take her today, her organs could be failing.
*
Are you on the FB group? They have an A&e file with everything you need to insist they do. Take a copy of the junior marsipan checklist.

@LizzieDarling and @Girliefriendlikespuppies. Thanks for your responses - much appreciated. Is the FB group the one mentioned at the start of the thread? I'll check it out. Don't mean to drip feed, but she is getting fortnightly consultations at the GPs, where he monitors her weight and heart rate. Have you had more success getting an escalation going via A&E?

I’m new to this so have no advice other than to check out the FB group - I got lots of great advice within minutes. The ‘beat eating disorder’ website is good too. Make sure your GP has taken bloods and done and ECG as this delayed our referral - it’s being sent today now. My DD is eating but in your shoes Id take to A&E where they can fully assess her. There can be all sorts of complications. xx

This one @NanFlanders
www.beateatingdisorders.org.uk/

[quote NanFlanders]**@LizzieDarling* and @Girliefriendlikespuppies*. Thanks for your responses - much appreciated. Is the FB group the one mentioned at the start of the thread? I'll check it out. Don't mean to drip feed, but she is getting fortnightly consultations at the GPs, where he monitors her weight and heart rate. Have you had more success getting an escalation going via A&E?[/quote]
Nan yes a few of the mums on here (dark and Betty) went in via A&e I think. It's absolutely not enough to see the GP fortnightly, she needs urgent refeeding in a hospital setting. She will be high risk of refeeding syndrome now and needs to start a feeding plan urgently.

I imagine they will need to admit her for 2-3 weeks to get started on refeeding. If she refuses to eat in hospital they will ng feed her.

Please take her today.

She needs bloods, ecg etc urgently.

Do not leave the hospital unless you are confident you can feed your dd at home.

The Fb group is the EDSUK group.

@NanFlanders is alder hey your closest hospital?

DD was under a general dietitian for weeks before we got the CEDS appointment. She told us not to worry and not to force meals. In that time she lost over 2kg. GPs and general dietitians are not experienced enough (that's no criticism to them, just a fact). I wish I hadn't waited but pushed for a specialist appointment sooner.

@NCYDN Yes, it's a specialist children's hospital. We actually had some good news just after I posted to say she has been moved up the list and has an appointment tomorrow - wish us luck. (Terrible evening tonight - blank refusal to eat anything, so all she's had today is a small bowl of bran flakes.)

Nan be prepared they will want to admit her tomorrow.

@NanFlanders that's good news. We were at Whiston and wasn't sure how far that was for you. But if you're bumped up the list for alder hey that's great.

So pleased you’ve got an appointment tomorrow @NanFlanders hope it goes well. Sending love and strength!

Thank you all for your kind words and advice!

@NanFlanders we went via A&E, too. Admitted and kept in for 9 days. Still under a psychiatrist a year later.

Hope the appointment goes well @NanFlanders - we were admitted to hospital from emergency Camhs assessment - happy to share any insight/answer queries

Hi all and specially to anyone new. A quick update from me, but @nanflanders my DD was admitted for refeeding at 39kg/79% weight for height after we had got her up to 44kg in the summertime. Shocked the living daylights out of her and was not pleasant at all (she thought it would be a bit of a lark). She was in for nearly 3 weeks. If Alder Hey don't admit her, then take a copy of the Marsipan checklist and go to A and E (google or get it via the EDSUK facebook page and check their what to do if you go to A and E resource) as under 500 cals a day is a massive red flag and should trigger admission. She needs to know there is no option and there should be total bedrest at that nutritional intake.

So. DD14 is doing ok physically, is now 95.3 WFH! Can you believe it? At her lowest she was 77. Mentally still not there but definitely better. Still hiding/crumbling behaviours and she still won't finish anything. Psych doubled her sertraline dose and this has really helped with her mood. Still on the olanzapine. But is now playing sport and has been on a few dates (gotta be good for the self esteem I reckon).

I am the size of a small country after losing 8 kg from stress. I cannot stop eating so am therefore an amazing role model lol! I daren't weigh myself but it's all worth it and I will deal with it sometime soon. Meantime, pass the lard....

Much love to you all.

Aww dark that's a lovely update, you've done so well to get your dds weight up. Makes me feel a bit teary as I remember how desperate you were in the early days 🥲 Dd still has those sort of behaviours but I feel the intensity isn't there anymore. It's almost like she does it out of habit tbh. Exciting re the dates and yy to being a confidence booster!!

Dds had a really busy week as she's been performing her GCSE drama show every evening. I went to watch it last night and could have burst with pride, she did so well and looked absolutely beautiful 😍

I was worried that the change in routine would upset mealtimes but we've actually navigated it really well and she's eaten better than ever. She's also agreed to eating 'pudding' when she gets in from the show around 9pm and hasn't got twitchy about wanting to walk afterwards.

In fact it all feels very normal 😳 Dear God please please let this be the beginning of the end of the ED!!!!