Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

We had fortisip and it really turned things around for us. We said it medicine just for now to help, we started with two a day with snacks but we said it may be more depending on physical obs that were carried out weekly. I used to sit and peel the labels off and it was presented from the fridge just a plain white bottle but as it was a prescription he happily drank it

I wonder if children with ED can be home fed with NG tubes? I did go down a bit of a google rabbit hole with this last night, and read some positive stories about rapid weight gain.

This is really helpful to know, thank you. She initially said "no way" to the idea of drinking it. I'm trying to make it sound more like a multivitamin than a drink. Last night there were signs that she might be amenable.

The fortisip hasn’t started well. Flat out refusal. In desperation I forced some into her mouth with a syringe and held her. After 25 mins she gagged and spat it out. A low point in the whole process. Fortunately she cuddled me after and we talked about it.

Contacted CAMHS and the psychiatrist called. They’re likely to prescribe olanzapine next week and said to try phenergan until then.

So, I guess we are happy to have a change in plan - feels like a glimmer of hope in having a new tool to try.

@HappyRainbow123 I don't know if it would make any difference but Fortisip does come in a juice form if she might be more likely to take it that way?

I suspect not, as she won’t have juice nor squash.

She’s finally eaten something other than a cereal bar - whole grain salad with dressing for dinner and a chocolate brownie for lunch (obv this is not all she was offered). So that’s a positive! She’d gone three solid days on cereal bars.

Ah, my DD won't drink milk which is why I looked at juice. Sounds like a positive day today. It's always small steps at the start.

I wondered about the juice ones too.
@HappyRainbow123 you are having a really tough time. Have they said you may get re admitted? Did your daughter eat in hospital? Is she frightened of going back in?
I would have thought by now the dietician would have given you a strict meal plan with 3 meals 3 snack and portion sizes. Non negotiable. It then makes it easier for you to say it’s the meal plan you have to have it.

Please keep asking for the support and when they come to your home make sure they are doing all they can. This is a very hard journey and your are not alone in feeling helpless etc.

They are talking about day hospital - so we would drop her off for something like 9-3, and the staff would feed her there. I’m not convinced she would get on well there.

She increased her eating when she was in hospital a little, but that was entirely me and M and S meals.

we were given the meal plan last week. It isn’t wildly different from what we were doing anyway.

I don’t understand when people say “non negotiable”. I mean, she just can’t/won’t eat. Short of pureeing the food and giving her a NG tube, how do other people enforce eating? CAMHS say not to make meal times last longer than 30-45 mins.

The home visiting team came 4 times last week. They say we are doing everything well … but if we are doing it well, why isn’t it working?!?

We have stopped threatening her with hospital. I imagine she feels scared and confused enough already, and given she may well end up in hospital, I don’t want her to go in thinking it will be terrible.

@HappyRainbow123 I totally understand where you’re coming from, the issue you have is they won’t allow her to lose weight or not eat. This isn’t just your issue. You have to have support from the experts.

I totally get about not wanting to threaten her. She is so young and you must just feel so sad for her.

You must feel exhausted with it all. How often do you get weighed?

So DD has been in the unit a month now. She’s sticking to her meal plan and has gained around 5/6kg so far I think. However she’s adamant she hates it, wants to come home (despite only having one try at home leave so far and she completely shut down and was in tears within 15 minutes of walking through the door). Dislikes all the staff, doesn’t really like the other girls currently there. Everyone and everything annoys her. Just wants to come home and pretend the last five months haven’t happened, and go back to normal. She wants to be able to choose her food and not have me checking everything before I say if she can have it or not, as that just made her feel like shit before. Never mind that she was just losing weight left right and centre when we were trying FBT at home. She’s insistent that I don’t believe in her, that I just think she’s going to ‘go bad’ again, and I don’t care.
There is literally nothing more I want than to bring her home. She’s 13 ffs, she shouldn’t be having to go through this and be away from home. I just don’t want her to hate me for making her stay there (she’s still on an informal admission, she’s not been sectioned. I’d be well within my rights to go and discharge her, and she knows all this).

Oh @SendTheNextOneIn what a time you’re going through.
I totally get akk you want to do is help her. People with more knowledge than me will be along to help.
She’s doing so well in there. I think we know if she came home she wouldn’t eat.
Shes so young and so precious and we really do get how much this is hurting you.
What are the staff at he unit saying? Is there a plan?
Sending lots of love. You’ve done amazing so far.

We have our fortnightly care plan review meeting tomorrow, and I should have the opportunity to chat to the team before they bring DD into the room so I’ll be able to talk to them about it then. I’m going to visit her this evening though and I can’t say I’m looking forward to it, if she’s just going to beg me to take her home for two hours.

You must miss her so much.
You have been lucky to get a clinic close to home. I know people often have to travel a long way for specialist treatment.

So hard for you all, I think this time of year makes things feel even worse xx

@SendTheNextOneIn my heart goes out to you. It’s very hard to have them in hospital. Obviously she’s not going to like it, it’s away and the poor chick is having her day entirely around food which is has to eat.
However you might need to be strong and keep going for a bit longer. And take advice from the team, my experience is that no-one wants to keep patients in any longer than necessary as the pressure for beds is so great (NHS anyway).
they will probably talk about coming home over Christmas as most inpatients do that at least for a few days.

New low point. The caseworker started talking about her having a severe and enduring ED. This is why she is proposing seeing her once a month. For background, daughter is 19, has been ill for 2 1/2 years & spent 18 months in hospital. Not a specialist hospital and now weighs less than when she was first admitted. She has not been offered any community programmes other than 6 weeks compassion based therapy. I care for her, preparing and supervising every meal.

has anyone else essentially had community services give up on their child? If so, what did you do?

@SendTheNextOneInit’s really hard but she’s in the right place 🤷‍♀️ it sounds awful but obviously she’ll hate it there as she has to eat, the ED will be majorly pissed off.

Id let her vent but dont take any of it personally, she needs to be there and ultimately she’s receiving life saving treatment (food.)

So I went to see her this evening and it wasn’t as bad as I was expecting. I think her main thing upsetting her is that she’s finding it hard to make friends (and it doesn’t help that friendship issues at school were a contributing factor in her condition). She seems to be closest with two other girls, and she’s upset because lately it feels like they’re leaving her out. A lot of her mental health issues stem from not feeling good enough, and she’s bounced from friendship group to friendship group since she started secondary school two years ago. The poor girl just wants some friends.

I’m so glad it wasn’t as bad as you thought.
Friendship groups are so hard.
I Suppose in a way, you don’t want her to make good friends in there. You want her to recover and get home!
Thinking of you. You’re all doing so well!

Your post resonates with me. I’m so sorry.My daughter is 16 now. She was first hospitalised in 2021. The most helpful intervention she had was day hospital for 8 months 2 years ago.
She couldn’t engage with the ED outpatient team ( partly because they were in the same building as her inpatient stay which was deeply traumatic for her) and they discharged her. Her weight for height is slowly declining and she’s consumed by the anorexia both mentally and physically .
Its terrible and I feel helpless as to what more I can do.
Sending empathy

How is everyone planning on spending Christmas? We’re not sure yet what leave DD will be able to have but we’re trying some home leave again this weekend to try and practice her being at home. We’ve told family that we will be having a quiet Christmas Day at home just the four of us, and me, DH and DD2 will see people through Christmas week, to take the pressure off DD1.

Would it be useful for anyone that feels they want to, to update everyone on their situation and plans for Christmas etc? Xx

It’s been a long time since I’ve posted here. My dd was diagnosed but refuses to engage with the ed team. We’ve had home visits where she won’t come out of her room etc. She’s also not attending school etc. She has been incredibly isolated and would rarely leave the house.
We went away as a family on a holiday of a lifetime (think safari) completely against the ed teams recommendation as we would not have had easy access to medical attention should it be needed.
However, the holiday had been paid for and I really felt that as we were all going to be thrown into the unknown (for us) it might shake things up in a positive direction. We were travelling with a small group of strangers- who luckily for us were completely lovely. We were traveling a lot, staying in remote villages/in tents and most importantly eating 3 meals a day together - buffet style meals
The first day dd ate at the very end of a long table away from everyone- but as the days passed she got used to the regular routine of eating - the food was very different and we were staying often in relatively impoverished areas. I think the combination of everything out of her comfort zone allowed her to loosen her grip slightly. While her portions were small, she did have 3 meals plus a snack a day. There was also no real opportunity for her to vomit/hide food etc. (her modus operandi is to chew and spit out food).
We are now back (obviously!) and I’m hoping to continue in a positive vein. I still don’t know how much she weighs but I have noticed she will eat bread now for example (small amounts) and the tension/stress about dinner time has lessened.
We’ll have to see it makes a difference in the long term. I just felt we had been doing the same thing for 18 months with very little change - doing something completely different was a chance for a reset- I framed it like that to dd also. We’ll see…

@SendTheNextOneIn
I’m glad your dd is doing ok in hospital even if it is so hard. I hope she manages to find the friendships she needs to help her continue.

@Shedqueen
As you’ll have read, my dd refused to engage with CAMHS then pulled the wool over their eyes and got herself signed off. We got an ED coach involved. And the coach basically taught me to be dd’s therapist because dd was too anxious to engage with her. Dd does now see her once a month but they’ve really only been able to talk for a few months and dd is only now really starting to trust her. So it’s been mainly me, and dh to present a United front when needed.

A lot of Langley Ods doing it is Jenny Langley type stuff. But I push stronger than Jenny when I’m able. I’ve also become incredibly attuned to her feelings and emotions to try to access as much of dd’s internal world as possible. The closer you can get the easier it is to see what’s going on and a couple of weeks ago I could feel a relapse coming on from signs of rigidity before it had even started. It’s incredibly taxing.

This resonates. Dd was diagnoised shortly before the summer and we almost didnt go on our holiday as her heart rate was low, but it was beneficial.
After that we ate out a lot - for most of september.