Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

Hi @Iovewinter thank you. I don't want to take away from this thread but sadly it's hard to get help as an adult, my GP doesn't know what to do with me and referred me to psychology, who rejected the referral as I wasn't bad enough.
I'll keep keeping on!
Lots of love to you all xx
Ps for the person who asked about Christmas, deep in my ED it was all about comfort, so sherpa blanket, thermals, fluffy socks, oversized fluffy hoody, electric blanket etc are all good ideas, or using my hands was a good help so a jigsaw puzzle, diamond painting set, something like that xx

Hi jaggered sorry to hear you're still struggling, Tabitha Farrah has written some good books and blogs which I think would be helpful to adults wanting to recover.

Gift ideas when dd was ill was as Jaggered suggested things that kept dd warm, the heated throw was brilliant, proper thick socks, oodie etc. Also I got my dd a candle that has jewellery in it which she loved.

Board games and craft type kits for distractions.

I still would buy a few clothes and chocolates as for me that's a normal part of Christmas and I don't like giving in to the ED.

Re the advent calendar last year dd ate it as part of her 'pudding' so that's how we got round it. If there not ready for that then maybe a non food advent calendar?

Love how's your dd doing? What did her team say re hyper metabolism?

@Girliefriendlikespuppies thanks that is a good idea I may see if I can get that into her supper although no doubt it will result in endless negoication.

she is ok (ish) she was in hospital with low heart rate until Thursday and has come home, the dietician believed it is hyper metabolism, we will find out on Monday if she has gained, she has had 5000 calories a day every day since Monday apart from one day where we had complete refusal, she is still sweating massively in the night though but freezing most of the time

@Iovewinter 5000 is amazing! Well done to your dd and you too
I would have failed if it wasn't for this thread. Even though dd appears recovered (I really hope so, but know she has to live with it lurking), I'm keeping on this thread in the hope I can support others as I was so grateful for all the support I got

We've gone with a sock advent calendar here. It's quite pricy but thought DD and her sister can share it, and me actually! Something totally different...sockshop do 25 pair calendar. We needed new socks anyway!

Lovewinter Sending you love and hope your dd continues to improve ❤️

A first for a while here yesterday. Dd ate one of her old favourite meals that she feared - sausages, mash and onion gravy. I got loads of cream in her mash and loads of butter plus the sausage fat in her gravy and she announced it was lovely. It actually looked like quite a small portion but was packed with fat 👍. The fats are definitely having a good effect on her.

@Jaggedbubble have you tried looking at Orri? They are a private service for over 16s but their instagram page is very good for resources and lives (it is always worth contacting them to discuss your options and see if you could get a referral). They also have a brilliant vimeo channel vimeo.com/orriuk

@Jaggedbubble really good advice here and I would like to add my gratitude at your kind words as to our involvement with our dds. I feel constantly failing and flailing and it's lovely to have some prompting to take a moment to give small self-congratulations.

I agree re. self-care presents. DD has a birthday at end of November so I've just got her the Body Shop advent calender. It's £55 but I got a black friday 20% off which may still be running. Obviously no good for Christmas but a present in advance or in lieu of chocolate advent calendar?

Jewellery is great as it's non-weight specific. Astrid and Miu is expensive but feels luxurious. This is probably really bad parenting but we bribed dd with an extra piercing (helix) and then said if she didn't engage with recovery then it would be coming out. Anyway, it worked. Clothes like dungarees or baggy trackies are safe.

On that note, we went to Subdued with her godmother yesterday. She tried on some jeans and couldn't fit into a size 8 and they'd run out of bigger sizes in all styles. She's 168cm and weighs, I think, around 49-50kg. In other words, 80something % WFH. And yet they didn't have jeans big enough to fit her! Jeez, how rare is a smaller BMI than that? No wonder they all have issues.

Self pity moment. I miss my life. I miss my daughter. Sat here bawling.

@SwattyPie hang on in there. So hard but it will change and will be different, really it will. I would let it all out tonight, have a good blub and get up tomorrow, you will be ok.

@SwattyPie I hope you have had a better day today - any small changes are massive wins, and you get to build on these improvements and slowly and gradually they become habit and ‘normal’. You are retraining your DD’s brain and her relationship with food.

I liken it to training someone for rock climbing who is scared of heights, with practice and experience then the fear lessens.

Someone told me on BEAT that there is no reason why it won’t get better and they were right.

Thank you. We have had some battles but she's mainly managed the meal plan we agreed. She has a weigh in tomorrow and is convinced she will have put on weight. I'm convinced she will have lost half a kg and they might stop school. I'm also beginning to research some other conditions - she is clearly depressed and anorexic. I think she has experienced PTSD from the speed in which it all happened. She got thrown into so many scary appointments with a large team and her mental health plummeted. I'm also looking at selective mutism, as she really can't talk to us. But she can snap out of it with friends or professionals. I feel like I'm grabbing at labels but each of these seems so apt. And I'm desperate. Maybe Cahms will put in further support? I have also been googling "teenagers being sectioned" this evening. Not a great night.

@SwattyPie anorexia presents in many forms, OCD rituals (same cutlery), depression (tears - underneath the fear they are sad they are upsetting their parents who they love), anxiety (constantly worrying about mealtimes) and Autistic traits (black and white thinking). In my DD these behaviours lifted as she became weight restored - but it did take a while (months). And DD shifted from being mute with us to seemingly having Tourette’s - I can’t recall how many times being told to f*ck off and die. But I knew it was the ED talking and it hated DH and I for challenging it.

I’ve been absorbing these posts if not posting over the last week as we work through our second week of FBT.

Just wondering what people’s experiences have been in the UK of inpatient treatment facilities? There are many reasons that I don’t want to go down this route but I think realistically it might be the next option.
x

@magnummum My DD has a friend she made that has recently been discharged from the Priory in Altrincham. I understand the care was good, and she has made very significant progress - not totally recovered but close to maintenance weight and challenging lots of fear foods. I understand the waiting lists are incredibly long though, and you can't even pay privately as the NHS has bought most of the places. My daughter's clinical team also said that as lists are so long, she would have to take a place anywhere in the country - so could be hundreds of miles from home. They also said that our DD wouldn't be referred to Tier 4 unless she could no longer be kept safe with a mix of hospital admissions (5 to date) and home care. They clarified that this would be if she started to refuse the NG tube. FWIW, family-based treatment does have better outcomes - although the strain on the family is immense.

Has anyone's DC been diagnosed with autism since their diagnosis with AN? My DD has written an essay about why she thinks she has autistic traits, (going back to infants' school) and why she thinks this has contributed to depression - which was then numbed by restricting. If so, did the diagnosis help in the understanding and treatment of the ED?

DD13 had her assessment at the Maudsley yesterday. Her diagnosis was EDNOS rather than AN (I assume because her periods came back and she's more than 85% WFH) but the treatment plan seems the same.

Came home with a meal plan that DD was initially like 'no way I can just start eating that' but we do need to cut down on the fortisip and so my plan (baby steps in agreement with the ED team) is to increase the amount of mouthfuls by 1 each day and add in a homemade breakfast smoothie instead of fortisip (alongside increasing cereal). Snacks were generally ok so I'm keeping them the same.

Yesterday was hard but she added a biscuit back in with her evening milk which felt like a big win.

The team were really clear about her not being able to do some of her plans if her medical stats don't improve (eg iceskating) which I'm hoping will be a motivator. She swings between really caring and not wanting to miss out, and then being skinny being far more important than anything else.

The team also agreed to work with the private therapist we found which I'm really pleased about as DD really took to her and is really keen to engage with the therapy.

It's probably wishful thinking, but I'm hoping we can get to a place where DD can at least sit at the Christmas table and have some food with us by that point. She's so fixated on Christmas being great this year and I just can't see how it's going to pan out

@NanFlanders I suspect DD 15 is autistic, I am not sure what a formal diagnosis would mean to her recovery / life and concern myself with DD collecting labels (DD claims to have ADHD - her school teachers disagree). Many of DD’s friends are searching for identities, claiming that they are ADD, non-binary, tourettes, transgender and autistic which is a shame for those girls who really do fall into these categories and perhaps need support - now everyone seems to need to join the club.

DD is 16 soon and I have thought about her being assessed for autism next year when her brain and emotions have hopefully settled after hopefully twelve months of weight restoration - I’d appreciate others experience and thoughts around this - does a diagnosis help the sufferer?

@LittlePickleHead that sounds like a helpful assessment and a way forward for now. I think it's normal to fluctuate in and out of motivation, my dd has gone from ambivalent to absolutely not wanting to change and extreme defiance, and is now accepting a recovery mindset but still finding it challenging all day every day. It is a journey but now you are building a team around you to help you which should make you feel less alone and also give you ideas of how to adapt what you are doing.

Feel stupid for having some hope for positive change. Just had a tough lunch.

How do you respond to the claim that nothing is as important as being skinny? That nothing else that could be lost as a result matters as much?

Don't argue. Just defer to what the experts have said when she says stuff, now they are involved. Get the Maudsley book, it tells you what to say, I think I used to say I'm not getting involved in a discussion of your weight/food/whatever, it's not helpful (or I've been advised it's not helpful). Distract, keep going. Great she had the biscuit. All change is a win!

LittlePickleHead When dd starts on about her weight I say 'We're not discussing this, it's not helpful'. Someone upthread suggested this and it has helped a lot .

Wishing you and your dd all the best. It's good you've had the assessment and have a plan in place. I think if you're mentally prepared for the ups and downs it does help. In the first few weeks I was devastated after a bad meal/day but we're a few months in now and I'm finding it easier to switch off and get on with life rather than mentally beat myself up about what went wrong.
Hope for the best. Prepare for the worst x

Just realised when I say 'A few months' that it's actually the best part of a year. I've lost track of time since dd got ill. 2022 has been our annus horribilis.

@LittlePickleHead My daughter has been adamant she doesn't want to recover. Her team have gone with, "OK, I can see that is scary for you to think about at the moment, but am I right in thinking you want to go to school/see your friends? OK. Well, let's focus for the time being on getting you enough energy to do that." She can't tell the ED that she wants to gain weight, but will accept the 'I need enough food to do X". Hoping that her mindset will change as she keeps getting the food in.

My dd has never admitted to wanting to recover, it's pointless even trying to discuss it with her so I don't tend to bother anymore. I also just ignore any of the 'I don't care, I just want to be skinny' type comments.

Little what does that acronym stand for? My dd never got a definite anorexia diagnosis as she didn't lose enough weight 🙄 they said it was a restrictive ED.

I am sure my dd is autistic, so many traits from when she was a baby until now. She was assessed, but a bit like the ED assessment, she wasn't quite autistic enough for a diagnosis.

For dd at the moment it's enough for her that I believe she's autistic and she believes it as well, she can make some sense of why she finds some things so hard, why she struggles with sensory issues, why she's always felt like she didn't fit in 😕

Dds really struggling at college at the moment, she is being bullied a bit and says she hates it. I've tried talking to her tutor which has not helped so I'm now feeling a bit hopeless. I don't know what to do tbh.