Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

@Proseccoismyfriend oh I really hope that once he gets back up to weight he is able to go forward without having any issues!

I'm on the lookout for some food tips. I've read the Eva musby book once, about to go back through it. I don't think it's an underestimate to say this has been one of the worst weekends of my whole life 😢 We've by and large managed to stick to 3+3, but it's been hard hard going, and I can't ever remember anyone being so abjectly horrible to me in my life. And then swinging to the most awful despair I've ever seen.

But... I need some snack ideas, im struggling to give her something which is calorific enough in between meals - I can manage 150 calories pretty easily, but Im struggling to think about some snacks which are small & have enough in them.

Sorry to be all 'me me me'. Im struggling with this whole thing - feels like we've been plunged into hellishness.

@greydoor - re snacks: there are shakes which can be prescribed (ensure and ensure compact). DD is refusing them but they work for many. There are also loads of nut/energy bars around which have 200-250 cals per bar. You just need to look through them in the shop.

Other than that - ice creams, home made shakes with cream, my DD likes bananas (at least something which is not ultra processed). I am sure some others will be along with more.

We often have a banana and an ice cream for snack which is easily 300-350 cals. Guess it depends on what your DD will eat.

@greydoor sorry to hear it's been hellish. It's very hard when the ED is fighting back. I found it very hard initially not to feel unappreciated and unloved by my DD when she directed all her frustrations and upsets at me. Your DD pushing back is a sign the ED is rattled. Great that you have managed the 3 and 3. If you want calorie dense foods nuts are excellent. Make a milkshake and stick cream in it. It's a bit tricky to suggest specific stuff as there can be things that are fear foods for many sufferers and not many of them admit to actively 'liking' stuff

Thanks both, really appreciate those ideas. She has avoided any nut bars so far, she says she has 'never liked nuts', but I could add them to smoothies (which she has also declined so far but I hope she will come around to), and I could make some of those energy ball things and see if she would give them a go. Ice cream seems a quick win too.

The ED is definitely rattled, we can say that for sure.

@greydoor just wanted to add - don't worry about healthy food right now. we add cals by eating junk but getting the cals in and restoring weight is more important for our DC than having a healthy diet.

Totally agree to ditching traditional 'healthy eating'.
Nut butters are a great source of cals.serve with apple chunks
Full fat cream cheese on ritz crackers with fruit.
Ff greek yoghurt and granola
Cheese and raisins
Home made cake of any description (or shop bought!!)
Flapjack is great especially if you make its so can add stuff like dried fruit (surprisingly calorific), chocolate chips, nuts etc
Maltloaf with lots of butter
Yes to icecream

Porridge made with cream also good.
Smoothies
Hot chocolate made with cream and add marshmallows and more squirty cream!

@greydoor sorry its been so hellish. It really helps me to distinguish in my own mind between the ED and my DD, so most of the hateful words are coming from the ED because you're challenging it.
My DD refuses shakes etc too which is hard as that seems a really good way to get loads of calories in. Croissants are pretty high in calories and not too sweet ("sugary" foods are fear foods for my DD), oaty/flapjack type bars can also top 200kcal even without nuts. On the ward here snacks are served with a glass of whole milk or OJ which adds another 100-140kcal per snack.

Oh and you can soak a lot of butter into a hot toasted crumpet!

@NanFlanders you mentioned DLA the other day.Is there anything for over 16s (both DH and I had to take time out of work to manage hospital visits/surveillance!) Thanks

@ReineDeSaba The disability benefit for 16+ is PIP.

Thanks @Curlyhairedassasin . I guess as DD is still in school rather than self supporting this would not fit?

Oh grey it is hell but well done for pushing through.

Chocolate bars are good snacks of she'll eat them,

home made flap jacks made with butter and sugar.

Cake of any description

Hummus and pita bread

Milkshakes or hot chocolate (bit weather dependent!)

@ReineDeSaba I would google the PIP questions. Many people get PIP despite working etc. DLA stops at 16 so those with a disability need to claim PIP. My eldest has severe learning difficulties and is on DLA but will have to move over to PIP when she turns 16. It doesn't matter if they are in school. On Pip, you score points depending on how much help you need with certain day to day activities. If you google for a pip self assessment, you can see the questions and get a feel if you may get enough points (you need 8 for standard and 12 for enhanced rate). Hope that helps.

@ReineDeSaba Yes. It's Personal Independence Payment (PIP). The young person has to agree that you can act as their representative (which was hard for mine as she wouldn't accept she was ill), and takes a while. We got awarded it first time, but lots of people get it on appeal. Start to keep a record of hospital appointments and visits and emphasise how long it takes you to support your DD through a meal. You also need a letter of support from your ED team. Happy to talk to you if you want to DM me your number.

That is really helpful @Curlyhairedassasin I will look at the forms and see if it seems to apply to our family. Part of me wants to believe that our current situation can't last much longer because it is too painful to imagine but then I realise I need to be pragmatic and prepared for a v unwanted long haul

@NanFlanders wow that's so kind. My heart's bursting from the support. I'll try going through the steps you suggest and see where we get to.

Thanks so much for the ideas, lots I'll try there. I've fallen into the trap of offering a choice a few times and I realise that's a hiding to nothing - neither choice will ever be acceptable. So I made her a small
milkshake with double cream and Haagen dazs and frozen raspberries this afternoon (it looked amazing!) and she drank it without any protest, and came to ask if that was it for snack or did she need to eat anything else (I estimated around 250-300c). So I'll give that a go again. She can't have cheese or chocolate as they trigger migraines, but there is plenty for me to be working through.

Thanks for the advice about seeing the ed as separate to her, that really does help, although it's so BRUTAL. I don't think I've ever had another human being be so awful to me to my face before, it's wounding! But I'll learn to cope with it.

Told our families today - we live quite far away from them - which was pretty hard.

I can't tell you how much this thread is being an anchor for me. Thank you so so much.

Grey that sounds like a great win, did you say yes when she asked if she needed something else?! If she'll accept a milkshake and something else as a snack that's brilliant. My dd would only have milkshakes as a pudding but I made one that was easily 1000 calories.

Greydoor You're doing so well. Keep going 💪. The smoothie sounds great for snacks. You could slightly increase the quantity each time you make it - use bigger cups etc so she doesn't notice.

We all totally understand the distress you are feeling. It's the worst thing I've ever been through. Many of us suffer from PTSD from the early FBT days. It's vital to find time to do things for yourself even if it's just quick a walk or a drive alone. I read uplifting books, watch my favourite 80s movies and have a stash of my favourite chocolate.

Be assured your dd loves you and needs you and the behaviour is not her it's the ED. It DOES get easier as you get into a routine and find ways to get her to eat with less distress.

This group is amazing and I dread to think where I'd be now without it ❤️

Greydoor if you can find time sign up for the BEAT Developing Dolphins course. If you can’t get on it straight away then order the book that it is based on - Skills Based Caring for a Loved One with an Eating Disorder by Janet Treasure et al. I found it so helpful as it gave me an insight into how my DD was feeling and how best to parent I.e. like a dolphin swimming alongside or going ahead or following behind depending on the stage of the illness. Taught me not to be a rhino!! Self explanatory!! Or kangaroo (overly protective). Taking the animal metaphors further you are aiming for St Bernard (lying alongside and offering comfort - think injured skier) rather than a terrier!!! Needless to say it’s impossible to get it right all the time and I think it’s not always a bad thing for them to see just how much of an impact the illness has on the whole family. There’s also useful information about not facilitating the illness I.e. tying up the kitchen for long periods of time so others can’t eat etc.
I hope this will be helpful to you. It keeps me sane when the ED is fighting back.

@Shanghai101 thank you - I've signed up for one starting next week. It's during the day but I spoke to my bosses today and they are very supportive of whatever I need, so it should be ok. I think someone earlier suggested being signed off and I can find myself getting ever close to that. I think the course should be useful though, and it looks like they send out a copy of the book beforehand perhaps, so I can get started on that.

Today was hard again. I went into the office and my DH stayed at home, with the intention of working but had to give up after a few hours. A tiny bit of me was validated by how hard he found it too - I don't think he got it when he came in from work yesterday.

But being in the office was really hard too, I completely resonated with your comment @BagpussSaggyOldClothCat about PTSD - I feel like I'm in the midst of something awfully traumatic. I cried when I read your comments about my dd still loving and needing me. You're so right, but this is so so hard 😢

I had a bit of a lightbulb moment today when I realised that it's not just me - she is also terrified!! Obvious now I think about it, but I hadn't connected with that. I printed off some basic information about ed to try and share with her - to try and give her the message that she hasn't caused this on purpose, it's something that other young people experience, and it's possible to recover. I'm going to move her to sleeping with me tonight too, she says she has been spending lots of time awake, and a) I want to try and soothe her but b) don't want her to get any ideas about exercising...

@Girliefriendlikespuppies - I missed a trick with the milkshake and told her she was done - great point about taking any opportunity, I won't miss that one again! I'm having to unlearn / relearn everything about parenting again, I've prided myself on listening to them and valuing their opinions and choices. This is a whole new world...

You guys are saving my sanity. Sending you all so much thanks xxxx

Oh bless you grey we have all been where you are now, it is hideous as the ED comes out fighting but your dd is in there and the fact she even hinted at wanting something in addition to the milkshake is really promising. She might not admit it but I would suspect she's really really hungry most of the time.

Someone said to me you have to see the beast to slay it meaning you have to rattle the ED in order to defeat it. It's absolutely brutal on both the sufferer and the care giver though and I definitely have a degree of PTSD from some of the distress dd and I went through.

I know what you mean re going against every parenting instinct but taking choice away and making those decisions for them is paramount to fighting the anorexic thoughts.

I would be careful about giving your dd any information about anorexia as she may not want to hear it. My dd remained in complete denial that there was anything wrong with her for a long time, giving her any info on how EDs affect people would have gone down like a lead balloon.

Yy to get signed off, definitely speak to your Gp and see if they'll sign you off with stress for at least 4 weeks.

@Proseccoismyfriend - how is your ds doing? Hope he's been ok on the ward and is improving, have been thinking about you.

We've got a last minute camhs appt tomorrow, but I think it's just a screening and then we will go onto a waiting list. I'm glad to get the ball rolling in any case.

I think I'm going to ask my GP about being signed off in some way. It's tricky because I do a clinical job and I have my own patients I don't want to let down, and I could probably cope with working 1/2 to 2/3 of what I do just now, but I can't manage my regular time. I don't know if they would agree to sign me partially off, but that's what I'm thinking of asking for. I'm sure that if I keep on trying to go on like this I'll burn out quickly, and that won't be good for any of us.

3+3 is still happening, bite by painful bite. Despite this I can see very slight changes in my dd, she is sleeping a tiny bit better - she said she was just lying awake thinking about food all night previously so I think any improvement in that can only be helping. I'm knackered though, and so emotional. Have almost cried 2 times in teams meetings today... and I'm premenstrual 😳

Thanks for keeping us in your thoughts. It's been a really tough week, he's doing 3+3 lunchtime is still his hardest meal but the determination he's shown is outstanding. We've spoken to cyps about some therapy for him as he blurted out whilst making red, Amber and green food lists that he can't eat the red as the bad feeling will come back. So turns out that's why he's avoiding certain foods to avoid the bad feelings. Consultant is swayed more towards arfid but until we've seen our community paed nothing will be confirmed. Their hopeful he can continue at home and may discharge him tomorrow if this continues and we will have some home help and support. I still feel like I'm standing at the bottom of Mount Everest and have a hell of a long way to go. Hope you can get signed off, I'm really fortunate and work will wait for me and I can go at my own pace.
Thoughts are with you all, we can do this