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...

In our experience the recognition of need to gain weight only came when she had a sense of a future she wanted to be alive for/she recognised the ED always moved the goalposts and even then the weight gain I think came lower down and was a by product of wanting to not collapse daily or not being in pain when she turned over in bed. Until then as girlie coined, you keep their head above water until they're ready to swim for themselves - it will come.

@SwattyPie they are very expensive for what they are, but Wolfy's porridge pots are more calorific than regular ones, the nutty, honey one is 360 calories and that's when you add water to make, I add milk to D's but even with water it's better than most

You can still decant swatty just make sure you are very careful to hide packaging. I personally feel that if you're doing FBT you have to make these decisions, using lower fat versions is just going to prolong recovery imo. How does she know what's she having? She should be well away from the kitchen when food is being prepared.

I appreciate not everyone agrees with me adding calories though, for us it was essential and we wouldn't have made any progress without doing it.

Little I would tell her she's lost weight as the meal plan will have to increase. With dd I always told her of any losses for this reason, maintains or gains I didn't discuss.

Swatty I think you just have to accept her distress as part of the process. Lots of 'I'm
Sorry this is hard for you' type comments, although with my dd saying anything just wound her up more so I learnt to not say anything.

@SwattyPie sorry I have to agree with @Girliefriendlikespuppies I would strongly advise taking control of her food and if you can sneak some fats in. I was against it initially, but after reading articles and also realising the importance of animal fats on the brain. I realised in an odd way I would be cruel not to do this. I try to reckon it to my father-in-law who has dementia, he is clearly mentally impaired so when he says he doesn't want to eat or wishes to jump out of the window we rarely think twice about forcing him to eat and drink. So while it is not as obvious in some ways, a child with an ED is mentally impaired therefore as her mother I feel it is my job to do what I can to get her brain healthy again.

Also from last year, I did find as the weight went on although she was never complainant, and there were still massive blow-ups they become less frequent and less intense as the weight goes on, with less ( still a lot1) pushback. so you could see it as a little help starting, so you help get her brain to a slightly healthy state where she is more able to fight the Ed more independently, but she is in desperate need of help currently

Dd likes overnight oats. 50g oats mixed with 100ml milk, 50ml of double cream with fruit on top - usually a sliced banana with blueberries or strawberries and a drizzle of honey.

I have to add fats to her food as she just wouldn't eat enough otherwise, but it's stuff we have in the fridge anyway so I'm not scared of her coming across anything. I don't go overboard as don't want her food to taste sickly but a good knob of butter blends well in curries, pasta sauces, soups, gravy etc.

I agree with the others. I know it's tough but I think taking control over food away from them (once you get through the serious fall out) is a kindness.
My DD has admitted now recovered that decisions over food felt totally paralysing and the ED would shout at her mercilessly so she would always take the lowest cal/ fat option to shut it up. Keep it happy.
This is why eating out was so tough. Choice was not helpful to my DD. We only added limited choice when she was much better.
When a sufferer 'agrees' to a meal plan its really the ED agreeing. And the ED is keeping them ill..
They have to be distressed, unfortunately. Its impossible to keep the peace with an ED and still get the sufferer better.
So I am afraid I would advise full control, banning from kitchen, no weighing/ packets with labels and full fat everything with extras added.
It's hell but once the weight goes on there will be improvements as has been said. So in some ways best to take that pain in as short a time as poss?
Anyway I know all sufferer are different but this is the route we used and it did work...eventually.

How are we all keeping our spirits up with Christmas approaching? Dd has always been at the centre of Christmas but this year she'll probably spend most of it in her room. She said yesterday that she's nervous about opening her presents in front of us so she just wants to open them in her room. I'm trying to keep a lid on my emotions and just go with what she wants and just be happy that she eats and is physically safe, but I'm desperately sad inside for myself and for her. January can't come fast enough.

I feel I should be putting on a 'fake it until you make it' front? It's what I keep telling dd, afterall.

We are a bit stuck. My dd is maintaining but not gaining, that's because she's still purging a lot even though she's on a good meal plan. For Christmas though, we are still going to have a good time, mostly by making it nothing to do with food! So, choosing a great tree, picking decorations out, theming them, making gifts/cards, having friends over for mince-pies, making lists for presents, doing nice wrapping, watching Christmas films. What we eat on Christmas Day isn't very important in all this, we are veggie anyway and have even talked about just getting a takeaway as no-one wants to cook a big meal just to have any stress over it. I'm not fussed about the food side of Christmas myself either, we do have chocolate around but that's about it. My dd's issue is a bit different though than most on here; she does eat, including a wide range of choc, meals, but she purges, ages later so we haven't cracked the thing at all by doing a meal plan (grrr). Not losing is better than nothing, but it's not solved by any means.

@BagpussSaggyOldClothCat I did the Beat workshop on Christmas and found it helpful.

DD and I have been talking through Christmas and I've been coaching her about what it might be like and what a plan of the day could be that she's not anxious about.

This was an open discussion about - what bits of Christmas are most important and is she most looking forward to (morning walk with the dog in a Christmas jumper, present opening round the tree, family games) and what is causing anxiety (being around family, the Christmas dinner).

We've worked through a schedule of the day incorporating and focussing on the bits she's looking forward to, then we have an ideal scenario for the difficult bits, but plan b (and c) if it's too much eg ideal scenario is she eats her (modified) Christmas dinner with us at the table, and has a smoothie for dessert. Plan b is food upstairs first and smoothie with everyone, plan c is food and smoothie before us and then she takes charge of table games during dinner. She wants to do plan A, but having plan b and c written down is reducing her anxiety about it.

It made a big different to her as she had built lots of stuff up in her head and assumed lots of expectations (eg we would want her to be around everyone all the time, she would have to eat a full Christmas dinner at the table no excuses)

Yes I think having a plan and back up plans are a good idea. Dds anxiety changes so much day to day so quite often she'll be up for doing something the day before but on the day she completely freezes and plans go out the window.

It's really difficult when dd panics about plans and can't go through with it, then gets upset and angry, obviously at herself, but takes it all out on me. As if I don't feel guilty enough already, I get her frustation and upset all piled on top. So because of that, I really relish the days we DON'T do anything because I can relax, but I know I need to gently encourage going out and socialising as she is happier when she accomplishes it. It's all just so exhausting and I've had enough of the constant issues, the blame, the guilt.

@BagpussSaggyOldClothCat DD struggling with real anxiety now - had to cancel big Xmas plans involving travel and family. How do they get over this anxiety, it’s debilitating for her, it affects her eating which is generally good and selfishly as a family we can’t do any activities. So fed up right now, feels like another Xmas in lockdown. DH has been making these family plans all year and when it all came crashing down I can see he is depressed.

Sorry to hear about cancellation of Xmas plans 😔 is your Dd taking anything for her anxiety. Dd was prescribed promethazine (will have spelt that incorrectly!) and it worked for her - we did have to be careful about when she took it as it did make her very sleepy. She's not on it now but was helpful as short term crutch/fix

D1ANA22 We have loose plans to visit family Christmas Eve and Boxing Day, planned for in between meals, but obviously there will be food around and dd is worried she'll be offered something and it's a really strong fear. If she feels she can't go the plan is dh or I will go alone. Neither of us feel comfortable leaving her alone when she'll be feeling really bad about herself. We're trying to keep lighthearted about it all in front of dd, despite feeling really sad inside. Tbh if she spends time with us out of her room, it'll be a win.

I just keep telling myself next year will be better x

DD back in hospital for the sixth time. Hard to believe that this time last year we didn't even know she had an eating disorder. She will be out for Christmas hopefully, but, like others, it will be too much for her to be doing family parties, so we can't go either. So sorry for (non-AN) DS particularly - if DH and I died tomorrow, we've had loads of fun, but he's missed out on so much due to lockdown and his sister's illness.

Thank you @myrtle I will look into meds as her anxiety peaks in year 11, I can only imagine the next few months getting trickier.

@NanFlanders I am sorry to hear your DD is back in hospital. I note what you say about younger siblings missing out - I am going to follow your experience so DH and I will take it in turns to take DS on holiday / away separately and DD stay at home with the other parent. Frustrating as DD pre ED has been around the world (literally) with me and DH together and now younger DS is going to miss out on family holidays and that experience. Then I have to ground myself and remember we are saving DD’s life.

Easy for me to say but look after yourself at the same time you’re looking after DD.

Oh no nan I'm sorry to hear that your dd is back in hospital, that's rubbish. I hope you're okay.

We're okay, dds doing alright at the moment, even helping herself to some extra food and eating her advent calendar chocolate! Really hoping that continues and we have a more relaxed Christmas.

oh no @NanFlanders - I have pollyanna tendencies but I'll avoid that tonight and say its complete shitfest and I'm sorry you and Dd are in that position.

How are you doing @NanFlanders ?

Thanks @Lottsbiffandsmudge and everyone. DD has done well in hospital over the past week (admitted on Tuesday) - even eating pasta, which she hasn't done for a year. Desperate to be out for Christmas. Got discharged last night, then refused the biscuit that was on her meal plan last night. Found her sobbing over everything she ate in hospital and she refused breakfast this morning. I don't know - it's just so hard isn't it? I'd hoped this admission might be a turning point because she did work hard - but she'll be back in by Christmas Eve at this rate. @D1ANA22 - do do the separate holidays thing. It really did my son the world of good to have some focus on him for a couple of weeks. @Girliefriendlikespuppies Amazing news about your DD helping herself to more food! That means so much in terms of having an independent life. @myrtleWilson I think there's a lot to be said for Pollyanna-ish tendencies. Keeps my DH going.

Oh no to refusing food now she's home Nan, would they consider an open bed at hospital for her? So the minute she refuses something you can take her straight back? I think you'd only have to follow through couple of times for her to realise she has to eat at home the same as when in hospital.

Hi everyone,
I hope you don't mind me posting here... I'm a researcher at the University of Oxford looking into the impact of caring for a child with anorexia.

Carer stress is common amongst parents caring for a child with anorexia nervosa, and can often impact on their mental health. Some people describe feelings of guilt and self-blame. We are wanting to understand how self-blame thoughts impact and contribute to traumatic stress experiences in order to better support parents in the future.

The research involves completing an anonymous, 15-minute online questionnaire which will ask you about your experiences of caring for your child, and how it’s impacted your mental health.

If you're interested in taking part, please visit:
psychiatryoxford.qualtrics.com/jfe/form/SV_cuaAtmB6cVg415I

Or let me know if you have any questions.

Thank you!

@Girliefriendlikespuppies I don't think so - they've been pretty clear that they'll only admit when her obs (usually her heart) are dangerously poor. They did have an open door policy for an nasogastric tube insertion in A&E for a while, but they rescinded it because it kind of backfired: she refused to eat because if she was fed by tube, it wasn't 'her fault', so we spent a lot of time sitting in A&E for hours then being tubed wrong (bleeding, in lungs etc.). I bloody hate anorexia.

Thank you @NanFlanders for your insight into the separate holiday arrangement for DS, you've helped make up my mind. Holidays are probably furthest away from your thoughts, I do hope your DD is home for Xmas - all of us on this thread appreciate Christmas is not the same but for us to have DD home after her hospital admission last year was really important and she does have fond memories of that Xmas, not making it all about food.

Take care (PS I too bloody hate anorexia and when I get a clear head I am going to do a fundraiser for charities that help others deal with this horrible illness).

OK. We have a plan! DD's heart rate low at appointment. Alder Hey have said she is grounded. They will call every morning to check what she has eaten the day before. If she missed anything, it's straight back in (@Girliefriendlikespuppies - your plan, I believe🙂). Two extra appointments scheduled for tomorrow and Friday. And breathe..... Thanks for all your support everyone!