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

988 replies

Lottsbiffandsmudge · 21/09/2023 10:56

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

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16
ReineDeSaba · 21/09/2023 11:02

Thank you @lotts

BagpussSaggyOldClothCat · 21/09/2023 11:17

❤️

Glitterfarti · 21/09/2023 11:33

Thank you!

In the quagmire of wtaf with whatever is going on, and school being less than on the ball. DD is still 80% wfh but not ticking ED boxes so I think she’s going to be discharged from the service with ?anxiety. Rock/hard place!

Hi to new people, sorry you’re finding yourselves here but you will get a lot of helpful info and support via the thread x

Lottsbiffandsmudge · 21/09/2023 11:47

@Glitterfarti I'd fight that tooth and nail
80% wfh is not good whatever the 'diagnosis'.

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NanFlanders · 21/09/2023 11:57

Thanks @Lottsbiffandsmudge

greydoor · 21/09/2023 13:08

@Glitterfarti - sorry to hear that, how frustrating. Is anything being offered in relation to the anxiety? I still don't really get how anxiety about food, leading to lowering of body weight which compounds mental health difficulties, could be seen as not an eating disorder... is it worth going to PALS and putting in a complaint to see if the decision could be reviewed?

@Girliefriendlikespuppies - it can all feel a bit relentless with the same old arguments going round and sound. My dd has become really rigid about what she will wear - one black vest top is the only thing she will contemplate at the moment. I had to wrestle it off her today, after we agreed yesterday that was the last day of wearing it because it was absolutely covered in food / dirt. Such a strange contradiction about being so determined to look a certain 'perfect' way, but actually not caring about things like basic hygiene, and so hard to have any kind of sensible conversation.

Welcome to new folks coming into the thread . Feels a bit fraudulent saying that - I've been here 3-4 weeks ish, but have found the advice and support invaluable. I went back and read threads 8 and 9, I agree with a pp who said it's helpful to have this sense of nothing new under the sun. I feel like it helps me to prepare for what might be coming, and to be doing the best I can be today to help. I've really signed up to sneaking lots of extra calories in dd's food, we are going through two big tubs of double cream and lots of butter each week now. Plus eating a lot more red meat for the fat and calories. There are glimpses of my dd from time to time so I think we are on the right track. Going to add in some more fish @NanFlanders - this makes sense too.

I've also been doing the BEAT developing dolphins course, we are 2 weeks into a 5 week course and finding it really helpful, so id recommend that. I feel a bit more hopeful about recovery, but also daunted at knowing what this path is going to take in terms of hard work. I have a sense of feeling like this is all quite unfair, we didn't choose this, although of course no one does, who would?!?!!

Mirabella - I was thinking about your ds and the complexity of what he's going through. Sounds like OCD / anxiety has lead to disordered eating as a coping strategy, but I guess what I've learned over the last few hellish weeks is that no matter how Ed starts, the fact that it's a biologically based problem means that once it's become established it kind of doesn't really matter how it started. Someone had suggested reducing exercise to try and recover some weight / nutrition, and wondered how you / your ds felt about this? If he is already seeing a therapist on the nhs could they ask for a psychiatric assessment for the purpose of prescribing medication, there are a few options for managing ocd or anxiety which might help I guess. But sounds like the exercise might need to stop for the time being if that's possible.

@Proseccoismyfriend - I don't know much about hypnosis, were you in the room with your ds while he had the session? Are they focussing on coping with eating, or coping with anxiety? Or maybe neither, as I say I don't really know anything about it... But something to consider if it helps.

Proseccoismyfriend · 21/09/2023 13:20

@greydoor no I wasn't in the room, she's ringing me tomorrow with her findings and is seeing him next week as predicted he's dropped another 1kg he's got until Monday to increase his intake and hopefully some weight or he needs to be tube fed, didn't think it was possible to feel any lower. He said to the consultant today he didn't think he needed to gain any weight and he was fine so im actually relieved she feels we are in ed territory and will hopefully get more support

greydoor · 21/09/2023 13:59

@Proseccoismyfriend oh blimey, sorry to hear about the kg, and the tube feeding possibility. I know there is no silver lining to any of this, but hoping the consultant being more confident about it being Ed helps get what you need in place quickly. How are you coping yourself? The whole thing is so hard to cope with, especially as parents / family are the conduit through which the fbt approach is supposed to happen. Feels really overwhelming for me, some days I feel more ready to do it, then others I just do feel like running away. Massive hug from me to you xx

NanFlanders · 21/09/2023 17:37

Sorry to hear about the further loss @Proseccoismyfriend. Would your son drink Fortisip/Ensure/Boost rather than have it down the tube? My DD moved away from NG, when the hospital said that if she wouldn't drink the Fortisip, then she had to have 1.5 times the amount down the tube. Could they try that?

I have something of a dilemma at the moment. DD had made huge strides in the last few weeks. We went out to Itsu to eat last night and stopped for frozen yoghurt (2 toppings!) on the way back to the Unit. Last weekend, she and her brother got a McFlurry from Maccie's for her dessert at her suggestion - going to Maccies was a massive for her: at the start of her illness when she was only eating one small bowl of bran flakes a day, I forced her to eat a McPlant burger and she felt so guilty that months later, she would self-harm whenever she thought of it. I am really proud of how far she has come.

She still refuses meds, but has just started to engage in therapy. She is doing her A-level work.

But (why is there always a but?), she wants me to back her being discharged from the Unit on 10 November. She has made a fairly sensible staged plan, with more and more time out, including days at school and uni visits. She calls every day hugely distressed saying that the Unit is making her worse, because she is surrounded by people with EDs - and that she finds it far easier to eat on time out. I do sympathise. After our lovely night out yesterday, we came back to the Unit and one of the patients from the (non ED) wards was visibly distressed and trying to leave the building. I don't have any concerns about her treatment: the staff are all lovely, but I totally get that being in a psych ward is going to be upsetting and put ideas in your head. She is still only 81% WFH though - and she has only gained 6 kg in over 5 months. All the evidence suggests low weight as discharge is the best predictor of relapse. She says she will continue to gain weight in the community. However, I am very aware that if she is discharged, then she is unlikely to get another place in a young person's unit given that she is nearly 18, and adult provision is abysmal.

mirabellablue · 21/09/2023 17:46

@greydoor thanks for your message - very kind. Had a call from the ED unit and they said he has atypical anorexia. Which I'm confused by as he is not deliberately trying to lose weight and doesn't care about body image.

Anyway, they are taking him on but I don't know how long the wait is. They said he is 'priority'.

But as you say, it doesn't matter how he's got here. *
*
Sadly we can't stop him doing exercise. It's not possible. He's 18. Not sure he'll engage with a diet plan etc either.

Yes, he has started taking antidepressants for his ocd/anxiety through a private psychiatrist so am hoping they will help - actually think they are our only way out of this mess.

@proseccoismyfriend so sorry to hear things have got worse. We are lucky to have found this group.

Lottsbiffandsmudge · 21/09/2023 18:12

Gosh there is so much going on..
@NanFlanders I can understand your hesitation. Your DDs turn around has been remarkably quick (from absconding to McFlurries in what seems like a few weeks to me!). That would ring alarm bells with me too. Also the child/ adult transition thing must be a huge worry. And 81% wfh is still very low.
But I guess 10 Nov is still nearly 2 months away..is there a wfh she has to get to? Is that part of the plan? My DD started to be more stable at around 90% (not better but more reasonable) but I am not sure how doable that is for your DD in the time frame. I also get that the competitive nature of EDs must be difficult to be around if you have chosen recovery. What do her team think? I guess I'd want to know the support that would be in place in the community and also if they could do 'open access' when she can go back no questions asked within a few months after leaving?

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Lottsbiffandsmudge · 21/09/2023 18:17

@Proseccoismyfriend sorry to hear about the loss. But it's good they are now treating it as an ED, as its clear to me it is.
My DD was quite young and her team wanted to avoid hospital as her AN was not classic 'body image' AN and they thought she would pick up worse behaviours that she hadn't 'thought of' once in a unit of older teens.
Does the threat of a feeding tube carry any weight with him so you can increase the cals..have they given you a meal.plan?

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ReineDeSaba · 21/09/2023 18:19

@nan that sounds really difficult. Sounds like your DD has been doing much better mentally. Can you encourage her to increase intake so she matches the improvement physically and a November discharge be contingent on that?

ReineDeSaba · 21/09/2023 18:23

@mira I would say w my DD there is a lot around control...is this something your DS is more focused on than body image and not necessarily losing weight (you mentioned he's bright and I think 'being good at controlling everything ' seems to often link into that)

Lottsbiffandsmudge · 21/09/2023 18:26

@mirabellablue your DS does sound like he has AN to me.
AN is a biological based illness triggered in those with a genetic predisposition when weight loss occurs. It doesn't matter how or why the weight loss occurs. The outcome is the same.
Atypical or typical are misnomers to me and may explain why it's harder for boys and men to get a diagnosis. Not all AN sufferers are teenage girls trying to look like people on tiktok! It does all sufferers a disservice.
My DD was never driven by body image. She was driven by fitness for her sport. She lost weight over exercising and then healthy eating was added in and she lost more and more weight and then she had AN.
Whatever the reason for the weight loss the treatment is the same. And unfortunately that means a meal plan and no exercise (usually). I am not experienced with older teens so others will be able to advise more.
I hope the meds help over time. But in reality the only way out is for him to gain weight.

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ReineDeSaba · 21/09/2023 18:42

@lotts has explained this brilliantly...once the brain is starved rationality has left the building and the AN is in charge

mirabellablue · 21/09/2023 20:12

I hear everything you're all saying, thank you.

I'm not sure his brain is starved though as he does eat (today, a fairy typical day - lots of peanut butter, dried fruit & nuts, butter, full fat yoghurt, mayonnaise, fruit & veg, cheese, tomato soup, some naan bread, chicken, some chocolate).

Not many carbs, definitely not enough for his height/exercise output but high fat foods.

He rarely gets ill and if he does, it's mild & he recovers quickly. Sleeps well. Hardly ever tired. Academically doing well.

But I agree, he absolutely has to put on weight - and an awful lot of it - and he definitely won't manage this without help.

Proseccoismyfriend · 21/09/2023 20:24

I think I've finally found rock bottom today. He has a meal plan but it's not calorie sufficient at all due to his fear foods & the anxiety they thought it was. Now I think he just doesn't want it because of the calorie content, at 10 years old, my god I can't believe it. I have managed to get a lot more into him today and explained that's the only way to avoid the tube I might be able to get the fortisip into him he was saying he didn't like the taste but that could be complete bollocks. We have to follow this new plan until Monday with added milk & bread. He's sobbed today and wants his old life back, me too kiddo, me too

LittlePickleHead · 21/09/2023 20:44

Just an update on my comment on the last thread about unexplained weightloss on 3000 calories a day. We've established that DD is going into the disabled toilet every day after we drop her back for lunch, so can only assume she has been purging lunch every day.

Makes sense as she was off sick this week and got very distressed at lunch saying she didn't want it because she was ill - I assume it's because she would be able to purge.

Getting urgent bloods from the ED team but I'm exhausted by the knowledge of the backlash that ever more monitoring and reduction of DDs Freeform this will entail. But she's lost 5.5kg since early July so the impact of this is significant (I'm still confused as most of that was summer holidays but now assuming we weren't vigilant enough and she's been managing to purge regularly outside of school)

I just feel done with this and have said in no uncertain terms any non compliance at all leads to no socialising, no babysitting, no phone

Am I being harsh? I feel so done and the compassionate side of this is harder to muster as it all goes on

LittlePickleHead · 21/09/2023 20:45

Sorry for typos - she is purging after we drop her back at school, and her distress is because she wouldn't be able to purge when off sick at home

myrtleWilson · 21/09/2023 20:59

Will read back in a second but just wanted to ask @NanFlanders - is DD going "all in" - is that doable in an ED unit (not sure how kitchen/cooking works). Would that be part of the discussion - that you agree to a Nov discharge if she's all in? She'd then hopefully be at a better wfh at discharge. I'd also say that my DD once she decided to commit to recovery was adamant not to be seen/be treated as part of ED service- she was very much "If I'm in an ED service and conversations rotate around the ED - then the ED knows they're in charge" - it was a 'fake it till you make it' convo. It did work (not in linear fashion obvs)

SwattyPie · 21/09/2023 22:19

@Proseccoismyfriend I'm so sorry to hear this. Sending hugs from afar. I really hope the threat of the tube works, or even if he has to have it, you can take some respite in knowing sometime is going in. @LittlePickleHead also really sorry to hear this - I'm glad you have got to the bottom of it as the 3000 cals seem like a lot to me (don't think we've ever got over 2000), so at least it makes sense, but must be so difficult to address.

Hello to all the newbies - I'm still plodding along at a snails pace. We're def in a better place than we were a year ago when this all kicked off for us, and fortune things are fairly stable now, but it's so slow, I do wonder if DD will ever be over it completely 🤷‍♂️

Well done to everyone on this thread for getting up and doing it all over again. We've got this. One day at a time. Look after yourselves too, people xx

ReineDeSaba · 21/09/2023 22:44

@little I found it v hard to curtail DDs freedoms at her lowest point but life becoming so mundane is probably what wore her down into complying w her treatment. Her biggest dream at one point was of being able to go to the toilet alone let alone go visit a friend (she had been stashing food, flushing food into the toilet, stuffing it up her sleeves along w self harming as punishment for any food eaten so I just became her shadow, even sleeping on her floor) It was grim for all of us (no time w other DD or DH) but something shifted for her when life got that dreary so I would say in our case it was worth it. And I think compassion fatigue is real, my only tactic when I am running on empty is to ask DH to take over and make myself scarce before I blow

ReineDeSaba · 21/09/2023 22:52

@swatty I really hope my DD can fully recover from this but I honestly don't know if I ever will. It's been such a dark path to travel I feel i can't imagine fully trusting the world again.

BagpussSaggyOldClothCat · 21/09/2023 23:20

There are many inspiring stories of recovery. It does help to look for those when you're down in the depths. Ro Mitchell on YouTube is a good one.

I had an enlightening chat with dd this evening - she's started getting chatty just as I want to go to bed 🥱. She talked about her school bully and her struggles with body image because of the bullying. She said she hates the thought of any other kids going through the same and becoming ill because of bullying and wishes she could stop it. It was so lovely to see her open up a bit and her empathy towards others. We've really struggled to get to the heart of her issues so I hope we are starting to crack through a little.

She probably won't speak to me at all tomorrow 😆 but I'll hold this little conversation in my heart to keep me going. My girl is still there and little by little I'm getting her back.