Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@Weightlossworried you as her mum will know that she’s made progress. It will be small things but they will be big things to your DD. Like eating a particular food or trying something new. I have a feeling that when they only feel that their progress is measured by the scales they feel discouraged. My DD has recently started to hate going to camhs whereas before she was ambivalent. I think because she always feels they are disappointed and don’t recognise the effort she has been putting in every day. It feels demoralising.

tonight my DD pointed out after her bagel snack, that one time she cried after eating a bagel for breakfast. And now she is having one as a snack! That is amazing progress- but does it show on the scales? No! I imagine the internal organs must have a lot of repair work going on. The ED teams must have some sort of set ‘target’ or timeline. When this isn’t met they threaten hospital. They have done that with us but I’m sure it’s more of a scare tactic as others have said. We were told that the average minimum in patient stay is 5 months. And they demonstrated just how much of her next school year would be impacted. But I think they only really admit when someone is a)really not eating or b) has dangerously low heart rate etc. At one point Dds HR was 40 and they were concerned but luckily that was one of the first things to improve.

I don’t know what advice to give other than the encouragement- and recognising what efforts your own DD has been putting in already xx

Thank you so much everyone. I had a lovely night out with a friend last night. We didn't talk about our kids and we had the best time which was just what I needed.

@Pearl97 I'm not convinced she'd drink fortisip/ensure either but I'm willing to try anything at this point. I'm not sure about caseworkers but I have made enquiries about an advocate as I agree, having a third party to take notes etc could be really helpful. If I can sort it for the review that would be perfect as I won't feel so scared and outnumbered.

She is on vitamins @Girliefriendlikespuppies , they're prescribed by the dietician and the tablet is huge. She takes them like a champ despite saying they make her feel a bit sick. I'm reassured by youn and others thinking an adult ward is unlikely. I think DD manages around 1800-2000 calories a day at the minute. I estimate her meal plan to be about 2500.

And I agree @Raspberrysins with so much of what you say. I know it's even harder for your DD as she actually is eating it all but just not gaining the weight. I find myself wondering if this is why my DD has become so angry towards CAMHs. All they focus on is what she's not doing but actually, even eating 3/4 of the plan must be hard.

Me and DH are going to write some stuff down that we want to say and ask this weekend and try and approach this all with as much positivity as we can. I think they've already got DD down as difficult and uncooperative and I don't think us appearing to be the same is going to help. But at the same time we can't carry on with them doing things that are actively harmful

My DC was under adult services. I think referring to the adult ED ward is a threat. When they were BMI 14.5, constantly fainting and I couldn't keep them safe I asked about hospital. It was so far off they actually laughed at me. The threshold for admittance to an adult ward is incredibly high, and someone eating 1800 cal a day but not improving is not it, unless they're at a super low BMI. Is there some way you can cut out speaking to the nurses, they're not decision makers and it sounds like they are very unhelpful

@Weightlossworried I totally agree with @unbuckle @Girliefriendlikespuppies and @Raspberrysins. The departments are so stretched, I would be very surprised if any hospital would admit her unless they were worried about her heart or other organs. Idol threats don’t help anyone.

Is there a GP associated with the team? As @unbuckle says can you see anyone else but this nurse? There must be a team and it would have to be someone a lot higher than the nurse to get an admission to hospital.

I think asking for a case worker or someone like that is a great idea. I know your daughter is on their ‘books’ now, but for the appointments to be so useless is crazy for everyone. They need to think how they can help her. I think writing notes is a great idea. Can your DH go with you on Monday?

I am thinking of you, you reallt are doing a great job. I’m happy to look through your list of questions, I wish I could come with you! Xx

@unbuckle that's terrifying. I would have thought that would be an immediate admission. They use weight to height here and my understanding is 70% and under is a 'red' risk and hospital admission. DD is 78%.

There isn't a GP associated with the team. The doctor on the team is a psychiatrist and I think it's him making the decisions and the nurse delivering them. This nurse had been lovely and working well with us (albeit refusing to budge on blind weighing), she'd agreed to a few weeks off weighing etc. Then I asked about having obs done elsewhere like at home or gp. She said she'd have to check with the more senior members of the team.

The next appointment after that was the one we just went to and her demeanour completely changed. My feeling is that the doctor has been completely unimpressed with her even entertaining my question and allowing DD to not be weighed. I feel like she's been told to rein us in and be more forceful.

DH always comes to appointments but he's as rabbit in the headlights as me! Monday is just a check of her obs with the male nurse we used to have. I think it'll be fairly quick - although he's been in most of our appointments alongside the head nurse he's been very quiet. I don't think he'll want to engage with us. Friday is the review with the scary doctor, the nurse, dietician and therapist.

I wish you could come with me too @Pearl97 ! I wish you all could. I may well share some of our thoughts/questions actually.

@Weightlossworried imagone if we all went! They wouldn’t know what to do!!!! Xx

@Weightlossworried I have been reading on easy ways to add more to the meal plan- as well as ensure which has already been mentioned - you can give calogen shots- which are only 40 ml.. these come in a plain flavour so that they won't think you're feeding them sugar. Perhaps best to hide the packaging.. Also something as 'simple' as adding a glass of pure fruit juice to every meal instead of squash or water (most squash seems to be sugar free these days due to laws changing!) A glass of pure juice can add around 100 cals too. Your DD may refuse these options - but it can be a way around the option of having a new meal plan .. if they think the choice is more meal plan changes, or just add some different alternative drinks they may find this option easier.. My DD would definitely be suspicious though - she likes to know EXACTLY what she's having and what's in it, which makes it very hard! I am allowed to cook dinner though, so have taken to sprinkling in some ground almonds which are undetectable.

Although we were told not to be sneaky, it's very tempting to try! I know you were caught out before so it depends on how you feel about it..

We do offer juice with her meals but she's never drunk it. I wonder if drinking something like ensure would appeal more because it's something an anorexic would have? It's a long shot but worth a try, those calogen drinks look good too.

I am tempted to give sneakiness a try but she does trust me in the kitchen so far, doesn't try and interfere or ask what's in stuff. I could ruin all that if I get caught. I do opt for calorie dense meals that she's already used to because I cooked them before i.e. lamb mince curry, paneer korma, coconut rice.

I've been going through my Maudsley book today, making a note of things that are recommended in there but contradict what the ed team are doing. Might be a good starting point for the review.

Sneaking calories in to food was basically how I got my dd back, it is stressful though and you have to be careful. I was fortunate that dd never questioned how I made anything or hovered around the kitchen.

I also added stuff like garlic bread to a meal that I wouldn’t have done pre ED iyswim. Pudding after dinner was also something I built on, it started as a small chocolate pot and gradually built up to a massive bowl of tiramisu or rice pudding (this is over a period of 6 months or more.)

It definitely works in terms of getting the weight back on but there is a risk of being caught out. Although I always thought of it in the same way you’d hide medicine in food if someone had dementia or something, it didn’t feel dishonest more that I made a decision based on what was in my DDs overall best interests iyswim.

Ultimately they need high fat and high calorie food, that is the medicine they need for recovery so I happily poured double cream into everything.

I might have another go at it. I'm meal planning tonight so I'll think what I can make that would allow me to sneak something in. Not sure I'd get double cream past her, she's like a bloodhound. She won't eat Bolognese any more because I swapped out 5% fat mince for 20%.

Stuff like the mince you need to decant as soon as it’s in the house, she also shouldn’t be anywhere near the fridge, freezer or kitchen so in theory she wouldn’t know 🤷‍♀️

The lengths I went to in hindsight seem ridiculous now, I spent ages looking at packets of stuff making sure I got the highest calorie version of everything. I would only go shopping when dd was at school, everything would then be decanted and the packets put in a bag and then straight to the outside bin.

All DDs food was plated up so she never had anything in its original packet. That also helped when portioning up stuff so putting more than one packet of crisps on a plate for example or a bowl of yogurt rather than a pot.

Yeah I do all that. She could taste it and said it was 'greasier'. I'm veggie but DH did agree (not in front of her!) that you could tell.

She'll eat lamb mince happily enough despite it being just as fatty but that's because it wasn't different to what we had before!

I've got a few things on the planner now where I can sneak stuff in.

I added cream to milk and put even the smallest amount of oil in any dish I could. I thought if they’re saying she can’t have therapy until she’s weight restored I can’t listen to them saying not to add stuff etc. Needs must and all that!

Yes, I definitely think I could do more adding of calories to food - we've also been told not to do it but after the last appointment I'm feeling rebellious!

Dd only eats pre packaged or pre made food. I have done everything I could in the past to make things as calorie dense as possible. With her, that has been with savoury food at dinner time. She still won’t eat pudding. Eg when I took over making a salad she made herself, she’d put a very small amount of cheese on it. I slowly increased that 3 fold over a long period. She was ED based veggie at the time and now eats chicken nuggets almost every night. This meal all started very small and I managed to increase the size of this meal over time. She is wildly suspicious of any change, so everything has to be very subtle.

@Raspberrysins
It is really positive your dd can recognise the progress she has made even if the team aren’t. My dd would not be able to do that at all. I think that attitude would be hugely detrimental for her. Your dd has a lot of strength and by the sound of it doing really well.

@Weightlossworried
16, that’s what I thought. And I also think this is scare tactics. Really not nice to be on the receiving end though. I also like the Maudsley stuff. I hope you find some interesting things to try there.

Thinking of you. I know the build up to the appointment on Monday will be tough. I think even though it’s hard, it would be useful to try to have a bit of a thick skin with CAMHS. To see that they use certain tactics to get a person recovered and they are just following a protocol. It isn’t personal. And because they seem unbending with stuff like the weigh ins, I’d be looking to toe the line where possible and do your own thing with the therapist if that is yielding better results. They don’t need to continue to be kept in the loop that your dd is having this therapy. That will just make things more difficult for you.

As for swaps to add more calories, I tried to give dd a couple of foods in higher calorie forms. She just stopped eating it altogether. I now know I have to be very careful to avoid rejection.

@unbuckle
I am sorry for what your dc has been through. And what you’ve endured as a mum. That sounds so frightening.

@StressedANmum
It is really good to read that your dd isn’t being influenced negatively by the other patients. I hope she gets her head around the weight gain and that the rapid gain has brought some positive changes within her, that you can see her coming back to you.

We are all doing a great job and should all be so proud of ourselves. This is such a great community and I am so touched to see so much strength within you all.

As for us, we got back from Cologne earlier. Dd really didn’t understand at all at first why I wanted to go to Germany. We go to France every year to visit dh’s family, which I am thoroughly fed up of doing. Dd is finally recovered enough to appreciate there is so much beyond what she knows and loves about the tiny bit of France we see. And I really didn’t want to go elsewhere in France. We lived in Germany before dd was born and I was overjoyed to return. I hadn’t been before to Cologne and discovered it is such a beautiful city. Dd wants to visit Rome now and because of this visit, Berlin. Her world is slowly expanding again.

@Mummyoflittledragon a lot of what you say about your daughter resonates with me. Mine is the same with desserts. She's much more relaxed about dinner so that's our opportunity to add in some calories I reckon.

And you're right, I need to be more thick skinned. I think I'm someone who needs approval from people like nurses and doctors and I find it hard when it feels like they're 'telling me off'.

It's so lovely to hear that your DD is wanting to expand her horizons. What an amazing thing you've done for her, nudging her to go somewhere new despite her protests. But even more importantly it sounds like you're enjoying it too! I'll add cologne to my list of places I'd like to visit.

@Weightlossworried I totally get what you’re saying about professionals. I am the same, well, I was until I realised that if I was just always a yes person, or more of a these people are half my age and think I know nothing kind of person, I wouldn’t achieve what I wanted.

So I changed my way of working with them. I took questions in that weren’t answers to their questions but questions of my own. I started trying to get to know them better. I realised that they were slalmost robots. They have seen hundreds of people like my daughter and they are litter ally following procedures. As you say below 70 wfh hospital etc etc. I realised they were struggling too as even they know saying eat to someone who doesn’t want to doesn’t work! So I tried to lighten the mood, show them I was trying but without upsetting anyone. Told them more about us as a family. Tried to get them to see my daughter for who she used to be not who was say before them head in a hood looking like she wanted to whack them over the head with the scales!

I also became best friends with AI. I talked things through and tried to work out how I could change. I realised I was just becoming someone I didn’t recognise, so I worked on not staying up all night feeling the doom, but trying to make goals and see how life could improve for me. It all sounds a bit crazy when I write it down, but I couldn’t go on as I was. I was just so sad it was making me poorly.

I would definitely get some questions for tomorrows meeting. I found the team meetings easier in a way as I had to respect that together they were trying to help. I also wrote down what they say as I kept coming out of meetings thinking they said something they didn’t! I will be on your shoulder tomorrow xx

@Pearl97 that’s interesting to hear things you have tried with ai etc. I’ve been using it to focus on my Dd but didn’t think it could help me too much I also have a habit of staying up late and scrolling / reading / feeling the doom. I agree that goal setting can be motivational. For us and them.

we’ve been trying to - 1)set a goal and 2) break a rule each week .. but I’ve sort of forgotten again and slipped back to plodding on. Eg. A goal could be to eat a certain thing. Or a rule could be one they have in their head. They need to make and shame a rule that they might be secretly following.

It’s worth remembering that the professionals (generally) won’t have had first hand experience of caring for their own child with an ED. You are the expert on your child @Weightlossworried, you know your dd better than anyone else.

Sounds like a great trip @Mummyoflittledragon, dd and I are going to Rome in Sept for a few days before she goes off to uni.

@Weightlossworried I used a lot of old school type recipes when feeding dd, anything that was quite stodgy so things like fish pie, cheesy pasta bakes (I made one that had salmon in and crushed Doritos on top which was delicious and about a million calories 🙈😂) puddings like steam puddings and custard, rice pudding, cheesecake etc. Custard can be made with cream for more calories.

@Raspberrysins it has really helped me! It has been my friend in the middle of the night, rather than doom scrolling it’s helped me take control of myself. My daughter told me a lot that I was mental, ironically she was almost right as it was sending me down a very dark path. Also, I felt the only person that understood how I felt was her as she had been in all of the appointments etc. AI helped me take back control of my emotions s and learn how to help myself. I really can’t praise it enough! It uses lots of water though so I’m trying to be as eco friendly as I can in other ways! Xx

@Raspberrysins DH has actually just used Microsoft teams to talk through everything he wanted to say. Then he saves the transcript and asked chatgpt to make it less emotional/more focused. It came out with some good questions/points actually. A really good starting point for us.

I'm definitely taking a notebook into appointments with us from now on..

DD is quite rigid in what she'll have for dessert. I'm going to try and give her trifle tonight though. We've also swapped our usual chicken roast out for pork belly.

I also use AI. DC also thinks its contemptible. But no human being wants to listen to me for the amount of time i need to speak, or has the experience to respond.
I've found it most helpful when i post from the edi perspective. Least helpful if you mention BMI as it goes right to a cascade of interventions that would not take place for an adult in the UK.
I've now limited the app to 30 mins a day, makes me feel more in control

@Weightlossworried
Thanks. You’re getting there with your dd too, even if it doesn’t feel like it. It’s just painfully slow. And the rigidity will go tiny piece by tiny piece. It finally is a little more with my dd this holiday. Dd played a little with my hair today and ate half a piece of cake at one of dh’s relation’s houses to be polite. Both big breakthroughs. And our dds do sound similar in some ways from our convos. Just hang in there.

It was the perfect city to introduce dd to Germany, not too big, felt quite cosy. At first I was disappointed as there is a lot of construction work going on, but we just hadn’t seen the pretty bits. You probably wouldn’t want to go for more than a couple of nights and stay in the old town. It was buzzing Friday night, but mainly older people as the students are home for the summer. Dh went to bed. Dd and I went for a drink and to see the cathedral lit up between 10 and 11.30pm. All felt very safe.

@Raspberrysins
The goal setting and rule breaking sound amazing. I would like to try that with my dd. Not sure if she’s ready yet though.

@Girliefriendlikespuppies
A trip to Rome sounds fabulous. I hope you both have an amazing time. Dh and I went many moons ago, pre dd. My dd has said she’d like to go. Another time perhaps if she still wants to go with me / us.

Those meals sound great. Full of stodgy. Unfortunately I don’t think dd would eat that. At least not right now.

And I can’t believe you all use AI. I feel like a dinosaur now lol. I’m so pleased it helps you all.

@Mummyoflittledragon I am so glad you had a great holiday, it gives everyone hope and reassurance better days are ahead!

I am not an AI expert, but it’s free and has a nice voice. It was able to calm me before camhs or however it is spelt appointments. I always think the name shows how annoying they as couldn’t they just drop the H to make it easier for people like me who can’t rennet how to spell it!!!

It also helped me use the red book (remember them) to work out what wth DD should be etc. I could never have done that alone! Xx

@Pearl97
Yes I hope it does give everyone reassurance. Holidays are good as a benchmark to look back to see how far dd has come. It’s obviously painfully slow as this is now the 3rd summer holiday with the ED. However, dd is so much farther forward than last year. Ditto the year before. The first year we had to take a friend, as it was the only way we could ensure dd would eat.

Yes I remember the red book. Maybe I will brave AI at some stage. I often need calming down. 🙈