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

[Curlyhairedassasin]

New thread as old one is filling up

Sorry I can't remember is she on olanzapine at all?

@Lottsbiffandsmudge no, she’s not on medication. I personally think that something to help anxiety would be helpful, but I know they’re not keen. We’ve a review with the psychiatrist next week so we might ask then.

@Mummyoflittledragon we have the meal plan now. And seeing someone from the team every day this week. I agree that getting therapy would be helpful for me (and I can get it through BUPA) but just don’t have the time :( I usually run a few times a week and need to start that again as a priority.

Your earlier comment about AFIRD - I agree, it does seem like that just now. Today was a “cereal bar” day, that’s all she’s eaten since yesterday afternoon. Two week ago I did manage to get good meals into her. Now she’s becoming far more rigid. But this is really a new thing for her, so I think it might be the ED trying to keep control.

@Itsendless we have weekly appointments in the clinic (3 so far) plus 2-4 home visits.

Oh guys, I know I’m just a massive whinge fest on here. But I’m just struggling to see any sort of glimmer of hope, it is just feeling worse. We had a teams meeting with the psychologist and home visiting team today, and without our daughter we could really lay out JUST how bad we think it is. They say we are doing all the right things, but I don’t understand - will it just start working one day??

I would ask them to consider olanzapine.. it was really helpful for my DD in quieting the ED voice just a little bit. It also helped my DD sleep to start with (that wore off quite quickly).
Any changes to what she will eat is def the ED. Going veggie, cutting out food groups, only eating packaged products, leaving little bits on the plate etc etc are all the AN exerting control.
It is so hard but somehow she has to eat what is on her meal plan, not alternatives.
That can take ages, with the repeated phrase 'i am sorry this is so hard for you, this food is safe, take a bite please' or something similar on repeat. Eva Musby can help with tactics.
Olanzapine can help with this to a degree (it is not a magic bullet, and does not work for everyone)
Some people have success with setting a time limit and then replacing the meal.with fortisip or similar up to the calories required.
In some ways you have to play bad cop. So she has a get out with the AN voice.
Iron will is required, total united front, no negotiating, and sticking to the meal plan.
Its totally relentless. I really sympathise..

You need to take complete control over her meals. Have set meal and snack times and you prepare the food, plate it up and sit with her while she eats it. Eventually she'll get used to it but she's likely to hate the set up to start with. If the meal isn't eaten then my DD has to have a Fortisip.
It's basically a full time job which is why most people have to stop working. There's no quick fix to get out of this unfortunately.
At our session today my DD was asked if she was finding things easier as her weight has been fairly steadily increasing. She said "no, I've just realised I have no choice". It really is endless but they can recover

Agree. We took over food entirely. She fought at first but gave in. She’s not ND though

@HappyRainbow123 we understand how hard this is for you.
Have they told you to give her 30
minutes for meals and 15 minutes for snacks. What are the team doing when they visit? Are they supervising meals and offering distraction?
It is good you’re explaining how hard it is for you you all.
have you now got a list of snacks and portion sizes etc.
3 meals and 3 snacks is the usual but they will add dessert etc if she doesn’t gain.
Please keep talking to us. We all wanted it here in a few weeks. Things do get easier, the feeling of doom subsides and you learn to cope with the new life for now xx

I'm really struggling , 11 months in. No weight gain. Stopped attending treatment. They're an adult (and rightly or wrongly diagnosed with ARFID) so hosp have never told us to supervise meals and they refuse point blank anyway. Trust and independence, that's what we were told. And hope. But there is no hope to speak of

@unbuckle My dd will be 18 soon. She isn’t under CAMHS or adult services either as she signed herself off CAMHS a year ago and refused to go back.

We are using a ED coach (lots of experience as a MH nurse in ED) and I talked about dd reaching 18 with the coach. Her view is parents can say what happens under their roof if their adult child is living with them.

I wouldn’t be able to abide by a trust and independence approach with my dd as she is currently too ill to be independent or trusted just yet. That would be a disaster for her. I will continue to do an as long as she’s under our roof approach right now.

I think I may have said this to you before so apologies if I’m repeating myself. Just giving you the perspective from a MH nurse, who used to work with ED patients in private care rather than NHS.

@HappyRainbow123 That’s definitely the ED fighting back as @Lottsbiffandsmudge said. And idk if it is ARFID as diagnosis is complicated. For a long time I wanted a diagnosis for my dd. But actually it’s immaterial. Getting food in is the main thing and Lotta has given you some suggestions of what to say when giving food. This approach may work and it is worth trying.

Eating cereal bars all day isn’t great. There’s very little protein in a standard cereal bar. Probably not much fat either. What would happen if you tried serving up the food on the meal plan? Have you tried doing that?

@Mummyoflittledragon thank you, I do think the approach is wrong on many levels but neither dc nor the hospital will agree to change. I can't make another adult do anything, if I refuse to leave food in their room or demand its eaten in front of me they will gladly eat nothing. It's possible it might have been different with clinical support.

We never had a proper meal plan, just a list of things you might eat for e.g. breakfast, which I think is normal at the Maudsley @HappyRainbow123 my dc probably did best overall and put weight on when we let them live off doritos, trying to serve regular food has resulted in a load of distressing behaviours that didn't exist before. All the books tell you to serve proper food, but I would say the real food goes in the bin but the doritos never did. I guess though if your DC is having some monitoring e.g. weight and bloods you can assess if you can take that risk. You shouldn't have to make that decision yourself, it should be the health service. I never managed it but I would try and make them tell you exactly what to do and not allow any bullshit about all families being different and needing to agree an approach with your child, so that they feel some kind of accountability for how it is going (and critically, that you do not)

@unbuckle you are in a very tough situation, which must be so hard to navigate. Adult services seem even more stretched then child ED services. I never had to deal with that, and i cant really advise. You have my sympathy though.
@HappyRainbow123 your DD is 11. So v young. Thats why I agree with them suggesting taking complete control. As a normal 11 year old she wouldnt be getting much say in what she ate would she? Carers make and serve the food. Prepare packed lunches etc etc. So this is normal for an average 11 year old. Your DD has an ED terrorist in her head trying to upset this balance.
That's how I framed it. I served each meal and snack and used various tactics to get it eaten..TV at meals, distraction of any sort, those phrases i used above, threats, promises (if you eat this we can do xyz), 'life stops until you eat' (altho in lockdown there wasnt much life to be had), threat of hospital. Whatever it took..
Then I sat with her distress, which was extreme..and cried a lot into my pillow...
This is an over simplification of the unrelenting hell, but still what we essentially did, with better and worse days etc.
I actually think for young kids you need to show the ED who is boss..so serve each meal and snack as planned, pin the plan to the fridge, use cal replacements if not eaten. Try to never give in to its demands. Somewhere in there is a scared 11 year old child who is being held captive by this disease. It is a bully and deserves to be annoyed, provoked and beaten out of her. By making her eat.

Thanks lotts, we really are stuck at the moment but even we have had better and worse times, it's just hard to remember. i think it's easier because i'm not having to spend hours on meals or coaching, but it does mean i am just slowly watching a decline I can do nothing about, and can't even engage services to intervene (this week alone i've tried the clinicians, PALS, the crisis team and the gp, all refer me back to the clinical team and all I get from them is an email from a group admin mailbox 'I acknowledge your email,)

Great advice for younger kids xx

@unbuckle
What happened with the Doritos? Doritos are one of my dd’s safe foods and fine as part of a balanced diet. And I’ve got her eating in a more balanced diet by crowding food in. And Doritos were a circa once a week ‘treat’ food so eating these daily was a massive step forward for her.

Idk if any of the information I’m going to share with you is helpful but I will anyway…

I got her eating more balanced meals, that’s partly by chance as her safe meal was ok but lacked a decent carb. And I have done this mainly by talking about the body needing protein, carbs and fats and why. For dd as she’s very appearance driven, that's a lot about her hair and her nails. So that her grows strong and looks healthy enough to have extensions and so that her nails will be strong enough to take the false nails she wears periodically. And as she goes to the gym once or twice a week about needing protein to build muscle. And with fruits and vegetables about a rainbow of colours and how these all provide different vitamins and nutrients and things like having healthy skin… not all in one go and little drips of this information and seed sewing.

As for just presenting dd with food or telling her to eat with us, that would also send her the same way. There is a fair amount of demand avoidance going on and we’ve managed to get her eating with us twice a week. The rest of the time alone or with friends.

It does take a lot to keep dd on side and I’ve needed to apologise to her before for pushing things too hard, stuff like that. And I think she’s finally accepting to take charge of her recovery a little, baby steps and all that. She’s had a chicken breakthrough (went vegetarian off the back of the ED) but is restricting in other ways because of it. These things are so massively complicated.

Have you tried Jenny Langley at all? She does a session on supporting adult ED sufferers. Idk if that’s at all useful. She and a colleague have also just launched the Univa app if you’re interested. They are doing a free 15 min consultation at https://www.univa.health. There are spaces today and tomorrow and some in December.

Thank you Mummy, for some reason doritos are out, syrup sponges are in. I guess the sponges are better. I can't engage in any illness related conversations yet, and yes i think it would trigger demand avoidance anyway if i did

@unbuckle Just to say you have my thoughts and sympathy. It must be incredibly hard to deal with this when your DD is under adult care. I have no experience of this but I read your posts and feel for you. Sending strength and I hope you have a good support network of your own. x

Thank you everyone. The meal plan includes choices (for eg, breakfast is cereal or toast with juice). It's not actually that far from what I was doing anyway, just more food!

I think we have been told that 30 mins is long enough to try. But despite that, the most normal stuff she has eaten in the last 5 days is 1x veggie burger, 3 x peanut butter sandwiches and 2x home made smoothies. Otherwise it's entirely peanuts or brownies or buttercream or cereal bars (and it'll generally be a day full of one item).

I sit her down and present her with a normal meal. If she runs and gets something else (like buttercream) then I figured at least she had SOMETHING. But in the last few days we have been much stricter about enforcing "proper" food, decided by me, as per the meal plan. But I have had literally zero success. I've read Eva Musby hundreds of times. I've the Maudlsley book. We have iPads, colour by numbers, connect 4, uno, sensory toys etc etc etc. Nothing works. The home visit team are lovely, but haven't had any luck either. She doesn't scream when they are here, but she just sits, silently furious.

Do you think that at least presenting normal foods is helpful, even though she doesn't eat them? I'm just hoping that the meals are at least desensitising her a bit.

@Pearl97 - yes to the "feeling of doom". Times one thousand. I can't sleep at night, just hear her crying in my mind.

@unbuckle yep, the ED team are telling us exactly what to do, we are presenting it to my daughter that we are just doing what the experts are telling us to do.

@Lottsbiffandsmudge we did mention medication to them recently, but next week we see the psychiatrist as the psychologist is away, and I think that might be a good opportunity to bring it up.

I'd like to add - I'm not critical of the ED team at all, and trust that they are experts. But things just seem to be getting worse.

@HappyRainbow123 I totally get you. I thought I’d felt doom before but this is next level. It’s constant and all consuming. You are doing your best. We get you aren’t criticising the team, just that things aren’t progressing. I found asking direct questions about time scales and what ED rhey suspect etc helps. They deal with this all day get day so don’t always see the pain you are feeling. We’re here. Keep talking xx

One of the home visiting team had a daughter with an ED, sadly we haven't seen her this week. While you don't need to have gone through this to treat it (I work in healthcare myself, and effectively treat many things I've never experienced!) I do particularly appreciate her words of support.

I think either they think this is normal, or they don't realise how bad it is. I actually send them a video this morning. I actually am hoping they tell me that this is normal, not that we have a super bad version of it!

Good idea about the video. This is all about honesty and you telling everyone how you feel and what is happening. That way they can help you or refer you to people that can. I’m glad you’re having home visits.
Did you manage any school?

No school yet. We had hoped she could try this week part time, but between her not wanting too and her reduced calories, we haven’t pushed it. Maybe Tues!

Dietician called. Prescribing fortini (and they’re happy for us to use the fortisip we ordered on Amazon, it’s just got to be limited as she is under 30kgs). Hoping to “sell” it to her as medicine if she hasn’t eaten. Any tips? She doesn’t have smoothies, milk or hot chocolate any more.

Great that they've suggested the supplement. I'd say it's a drink the Dr has said she needs to have X times a day to ensure she is getting all the nutrition she needs. It's medicine and non negotiable.
My DD has one at her morning and afternoon snack - plus the actual snack. If a meal isn't eaten then another drink needs to be drunk.

I hope it helps. Meals are also non negotiable, but she manages to avoid these, and has declared that these supplements will also be refused.

edited to add - I’m making it sound like I’m a really permissive mother. I’m def not. I haven’t been a “eat everything on your plate” parent (my mother did that to me, and it did me no favours) but I am reasonably strict.

Is she aware that not gaining weight will result in her going back into hospital? My daughter doesn't want to have to repeat a year of school which helps as motivation. Sometimes anyway!
I know it's hard and she's likely to try and refuse the drinks but just try any way you can. I really hope she manages them as they do really help. Best of luck!

Yep, we have explained this. And that the hospital might need to give her a NG tube. She says she doesn't care.

I might suggest that some children need to repeat school …

In her defence, she says she is trying really hard, and just can’t eat.

I have a child with other health issues who takes supplements. Fortini is small but absolutely bogging. I would see if you can get scandishakes, they are actually not awful and are nearly 600 calories a pop. My dc fortifies them with olive oil, nut butter and oats too (it's not prescribed for an ed, and its v interesting seeing how someone who genuinely wants to gain weight approaches increasing their intake!)

Also, much as in ED circles i've heard ng tubes being horrific, my other dc was tube fed at home for over a year. I know it's psychologically v hard for a person with an ED but physically its ok for non ED patients