Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Girliefriendlikespuppies so glad you're finding some time for yourself, definitely enjoy it!

@Girliefriendlikespuppies enjoy your time to yourself, hope you get some rest and turn off from ED.

In your post last week you mentioned that your DD has desserts after dinner, what option / variety do you present? I feel like I have exhausted the range of desserts when DD was refeeding and those particular desserts are quite triggering for me (my problem I know, DD may not be that bothered). What do you provide for desserts, what do others provide? Strangely DD has quite a sweet tooth.

Hope everyone had an OK weekend. DH is home with the DC - I have to work this week in the office. He is not as vigilant as I but should be OK.

nomore we use a variety of yoghurts, puddings, gelees and ice cream. all shop bought. DD is not eating home made stuff.

Nomore my dd has a sweet tooth as well, 'pudding' is a loose term really as it's v rarely a traditional pudding. Generally she helps herself to chocolate/biscuits or sweets and that's pudding.

She still likes tiramisu so has that a couple of nights a week and sometimes will have ice cream. It's better for me now as I don't have to have pudding as well and just finish off the few bits of chocolate or whatever it is she's having!

It's been nice to have a couple of days not having to think about cooking dinner, I've just had things like crumpets or beans on toast! I do miss dd but from the texts I'm getting it looks like she's having a great time.

@Nomoreplease23 my DD has yoghurt currently as per the hospital mealplan. It's a thick and creamy one, full fat of course. The hospital dietician gave a choice of ice cream, yoghurt, custard or rice pudding. But I think anything that has calories and fat should be fine considered a win!

Nomore we tend towards ice cream for puddings - my dd can choose between a cornetto or a mini Haagen dasz pot. They are around 270 ish calories each.

Thank you for your ideas - the ice cream had fallen off DD’s desserts, will move to get them back on with the variety you recommend. I feel that DD is leaving a little bit more on her dinner plate, it is like cat and mouse. 18 months ago I would have sat and ‘forced’ her to finish - we are not back there but wondered what approaches I should make to her. DH says I should speak to her away from the dinner table, but she does shut me down (not usually around food but other teenage issues I will get a ‘shut up’ response🙁) - would appreciate any ideas how to broach this.

@Nomoreplease23 - it's tricky if your DH isn't behind you. My dd was leaving food on her plate, and I just said to her very calmly and quietly, with lots of love and warmth one day in between meals that from now on she needs to finish everything we give her, that's the rule and that's what will be happening. Depends where you are on recovery I guess and if you are at the point of trying to help her recover hunger, but leaving a little bit each time feels like an Ed behaviour to me, and probably best to have a firm boundary around it. As far as I can understand it, the goal of this kind of boundary setting is to demonstrate to the Ed that it's not able to gain more ground - leaving a little bit doesn't do lots to her calorie intake overall, but it DOES allow the Ed voice to get that little bit louder.

Could I ask some advice about vitamin supplements? I think we need to start something, and probably both a general one, but also anything specific for hair growth. My dd's hair is falling out by the handful at the moment, I just pulled a great tangle of it out of the shower drain. I think it might be good to try and give her something - does anyone have any suggestions? Thanks

@greydoor We found Forceval very helpful for hair loss. You can get it on prescription, do should be free.

Thanks @greydoor - I need to tackle this. Will bring DH onboard. My nerves are shot after all the confrontation over the last two years - I thought we were past this. Will pick my moment.

As @NanFlanders says Forceval was also prescribed to my DD from the onset of her illness. As a heads up, DD sometimes found the capsules hard to swallow (they are quite big) and was naturally sick a couple of times after taking them, but not that often over the course of twelve months. They have a very good vitamin content.

@greydoor my DD is on 300mg of Thiamine a day and also has Forceval soluable daily too. These were prescribed in hospital, but she has them at the ED unit too. Last week, she was also started on a strong Vitamin B tablet too. My DD is also loosing a lot of hair. Luckily she has very thick hair but it is coming out in handfuls. She has two bald spots on top of her head each the size of a 50p piece. One is already starting to grow back. Apparently the hair loss comes around 12 weeks after malnutrition, but should start to grow back once normal eating resumes.

These are good for general vitamins with iron

https://amzn.eu/d/1aULy3B

And dd also takes a thiamine tablet and vitamin D tablet daily - which are both teeny tablets, and these Bcomplex gummies as we found a lot of the B complex tablets were too large.

https://amzn.eu/d/enbavAR

@greydoor also on Forceval here and it's recommended by the Unit that this be taken for at least a year. DD was also put on high dose thiamine for the first 2 weeks of her admission which I think is standard for ED admissions too. She has had some hair loss but its so far not been hugely noticeable.

Thanks for this, I've ordered some forceval online and will ask for a prescription at our next appointment. Will have a look for the others too. She has always had such lovely thick shiny hair, hopefully it won't take too long to come back. The 12week after malnutrition makes sense in terms of our timeline...

@Nomoreplease23 I completely get what you mean about nerves being shot. I feel like that and we are only a little way into this...

I didn't really invite any discussion about it, I just said that's the plan. The other way might be to address it directly and just say you have noticed her leaving more, and you know that the Ed voice can be very loud and hard to resist, and you completely understand how hard this is, and you want to just help her with it.

Morning.

I'm thinking of calling CAMHS to see whether they can expidite seeing my daughter. I feel she's eating so little and losing weight so quickly.

Can I ask what your DC eat in a day? I can't make sense of my daughter's consumption. Sometimes she eats chocolate but other times won't even touch chips and ketchup (her favourite), for fear of the calories.

I think she's eating what she wants in the morning then restricting in the evening because she's feeling guilty? Over the last few days she has eaten:

Saturday
• Large pain au chocolat
• Half a sausage roll
• Lollipop
• Protein bar
• Flapjack

Sunday
• 2 Chicken wraps
• Piece of chocolate

Monday
• Bowl of cereal
• 2 sausage rolls
• two tablespoons mixed veg

Tuesday
• One Brioche roll
• Strawberries
• Grapes
• 3 small Gyoza
• 1 mochi
• Porridge with honey
• Few chunks of chocolate

I've bought Eva Musby's book to help her at home in the meantime.

Catsback

Yes keep on at camhs as your dd can't continue to lose weight. Remember that GP/A&E is always there if you're worried about her health while you are waiting.

Her diet is very erratic, as was my dd's when she was restricting, and she really needs a meal plan. Camhs will give you a 3 meals, 3 snacks meal plan but you don't have to wait for them.

If you google 'eating disorder meal plans' and click images there are examples that you can tweak to suit your family. My dd started at 1500 cals plus whatever I could sneak in.

I would write out a plan for the week and stick it on the fridge and make a start - easier said than done I know. Tell dd this is what the doctor said she needs to eat to be healthy/go to school/see friends/clubs etc. If she doesn't stick to the plan all that must stop.

@BagpussSaggyOldClothCat Thanks, this is really helpful. I'll do that right now.

I agree @Catsback

There is no logic to an ED. Your DD is just trying to get through the day feeling starving hungry but at the same trying to satisfy that voice in her head berating her for eating. And when I say berating I mean shouting, bullying, tormenting incessantly.
Taking control and doing a meal plan is actually a kindness. It can give the sufferer an 'out' with the ED voice (ie mum made me so I can't help eating it) the guilt and feelings eating promotes are so hard for them to deal with tho. So it won't be easy.
Set out a meal plan. And do as Bagpuss says. If she's lost more weight take her back to GP or A&E for more physical checks.

My DD said the hunger she had was so unbearable it made her scream in pain
The voice was louder tho
She was grateful (in hindsight) that I took over.

This is so sad, so many suffering with this awful illness

Thank you @Lottsbiffandsmudge - :( Thanks for your advice. It’s helpful to think that she might see it as an ‘out’.

I’ve shopped for the meal plan, and will be implementing it from tomorrow. Incidentally, has anyone read Hadley Freeman’s autobiography Good Girls about her experience of Anorexia? I found it very eye opening. Also another question - does anyone recommend the Eva Musby books? One is large and quite expensive (about £40), and the other is more affordable (about £17).

Catsback

I got the £17 one and it's a big paperback. It's a good format and easy to find what you need help with. I also paid to access her bitesize audios which are £10. Listening to her calm reassuring voice when stressed is helpful.

anorexiafamily.com/product/shop-bitesize/

@BagpussSaggyOldClothCat Is it this one?

@Catsback that's the Eva Musby book, yes.

how long is the wait to see the ED team? Her eating is erratic but it seems very little and certainly not enough. If the wait for ED team is long, go back to GP or a&e if really concerned (I took DD in Spring on a Saturday to a&e when all observations were normal and on a Monday I called 111 as get puls was low and she felt cold and they send an ambulance and she was admitted to the HDU - with EDs, things can escalate very quickly. bear that in mind).