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Support thread 9 (!) for parents of young people with an eating disorder

986 replies

Girliefriendlikespuppies · 20/06/2023 08:52

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

OP posts:
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Whippetlovely · 22/07/2023 22:56

@NotDonna that gp sounds rubbish, I was lucky the gp was fantastic and took it very seriously, perhaps you can see someone else. Even if she’s not for an ED 78%wfh is very low I would expect them to be doing some tests to find out why if she is eating high calorie as you say perhaps there is another issue. Gp should do some bloods as a minimum.

My DD is almost ocd with routine and times to eat things now. She sets an alarm for 7.30am to have her breakfast even in the holidays. She can’t cope with things being out of the time she’s used to. Not bad a good day today she refused the yoghurt we gave her and the new bread , after nearly 90mins she was crying so much and really stressed about missing the time she’s meant to have the lunch we decided that she needs to eat so allowed her to have her usual lunch. We left the yogurt out for her another 30mins she said I can’t do it I’m sorry to upset you but I will do it tomorrow. I’ve read Eva musby and we have set the expectation feel a bit of a failure but I am expecting she will eat it tomorrow as she will know it is coming. It’s very stressful and we had the I hate you and I want to die speech but then after the guilt about saying this. To the poster saying they are at thier wits end I totally understand. The therapist has said we have to seperate the Ed from the child it’s not them. Easier said than done and I did lose my temper today so bit of a hypocrite! It really does suck the life out of you sometimes. Tomorrow is a new day and we will beat this bastard !

LittlePickleHead · 23/07/2023 10:33

Thanks everyone - it helps just to have a rant to people that get it.

Met with a friend last night (who is going through her own stuff and also gets it) and put the world to rights so feeling a bit stronger today.

I'm going to go to the GP this week about the fatigue, I feel like if I could just get up a bit earlier and go for a brisk walk in the morning before everything starts it would help, but the bone aching tiredness is making it hard to get out of bed. It could be peri, or just the stress of everything that's going on!

Bluebuddha10 · 23/07/2023 12:35

Hi everyone. I posted in this thread yonks ago, maybe the very early threads, but not posted for a long time. A brief overview, my DD was diagnosed with anorexia aged 12. Has spent 2 very long stays in adolescent ED units, numerous stays on general ward. She has never achieved recovery and 10yrs on still being monitored on a weekly basis. Has been permanently stuck on BMI around 14.5 and has numerous other health problems now due to the long term anorexia. Has been some positives, stayed in hometown for uni, but moved into student house which was worrying, but on the whole managed it fairly well, with alot of support. Graduated with a 1st and has had some good jobs along the way. But the ED is still very dominating and I worry for her long-term prognosis. But in the last 6 months, there have been some significant changes. She now binges and purges, something she has never done before, and it's becoming more and more frequent. She lives back at home now so it's pretty obvious. I'm going to try and call her ED consultant tomorrow but it's more tricky being in adult services, cos they are not allowed to say anything to me without my DD permission. I don't really know why I'm posting, she's no longer a teen, but I'm at a loss with this latest development. One night recently we ended up in A&E cos she was vomiting blood. They said nothing too serious, prob a tear or burst blood vessel. Since she was already under ED team, they just sent her home. She is so underweight and fragile, that I just worry self induced vomiting will be very damaging. I'm exhausted with it all, and just cannot see how this is going to end well. We have had 10 yrs of restricted eating, in and out of hospital, suicide attempts etc, but this latest development has really upset me. Has anyone been through this, got any advice? Sorry for long post

Hennups13 · 23/07/2023 13:51

I’m so sorry I’ve not been on in a while. This whole thing just totally encompasses every moment of our lives doesn’t it? You’re all so inspirational in your strength and knowledge.

An update and question from me, if I may - My 9yo daughter is making some good progress. She’s desperate to eat ‘normally’ and is trying to eat some of her ‘red’ foods, ones she wouldn’t consider two months ago, like nuggets, chips, crackers. She’s doing ok. Ate most of a spicy mini chicken fillet, a couple of chips and some peas the other day - woohoo!! She’s been eating approx 2 jacob’s crackers for lunch. Dry.
But then she just backtracks. Stops eating. Halfway though something quite often.
Had only half a nugget last night. This morning she tried a warm croissant with Nutella on. Practically wolfing it down, exclaiming how yummy it was. Then halfway through just stopped. Asked her to keep going and all we got was ‘no’. Total refusal.
The psychologist is confused by this behaviour when she’s seen it. Daughter will be enjoying something and then just stop. Done. Refusal to carry on.
Anyone any experience with this? Thanks!

Girliefriendlikespuppies · 23/07/2023 14:13

Hen** yeah it's really common, does she hear a voice? The voice might be telling her to stop/she's greedy/has no self control etc. It's really really important to push her past that if you can. Do not let her get down from the table, keep encouraging her, the more she can finish everything the better.

Blue I'm so sorry things are still so hard. Would she consider another adult inpatient stay? She sounds so ill. How often are they checking her bloods? I honestly don't know how you've done this for ten years 😢

OP posts:
Shanghai101 · 23/07/2023 19:23

@Bluebuddha10 i can only tell you what the ED psychiatrist told me last week when my DD age 19 asked about AN turning into binge eating. She told her that this happens because people are discharged from services too soon before recovery is complete I.e. when WR but not psychologically better. She reassured her that she would be just as concerned about binging as she would about AN and that she will not discharge her until she is fully recovered - but that it is a very long road. I hope and pray you can find a good team to work with your DD. They need to be ready to contemplate change but they also need skilled therapists to help them along. And we have to hold the hope for them until they can hope themselves

Bluebuddha10 · 23/07/2023 19:38

Thanks @Shanghai101 . My DD has never been discharged, she has been under ED team for 10 years. The only difference is that she was transferred into adults about 2 or 3 years ago. She still is weighed and obs done weekly, bloods and ECG every month and monthly appts with the ED psychiatrist. I'm going to speak with her psychiatrist tomorrow, but you are right it is a very long road.
Thanks @Girliefriendlikespuppies they did want her to go in last summer as a voluntary patient but she wouldn't, instead she put a little weight on to raise her BMI to 15. They agreed that if she stays at 15, they could continue working with her as an outpatient. But she never does, it always drops back down to 14 /14.5. . They check her bloods/obs monthly. Her diagnosis was changed in 2018 to 'severe and enduring anorexia ' 😢

Shanghai101 · 23/07/2023 20:31

That is so hard @Bluebuddha10 i read somewhere that the average time to recovery is 10 years. So you are due a break! Good luck with the appointment. I really hope that your DD can find something to give her the motivation to get better. I search everywhere for hope and I read time and again that full recovery is possible. I know there isn’t anything I can write that you haven’t read a dozen times before so just sending you Hope

SwattyPie · 23/07/2023 21:31

Anyone know any stats for full recovery? Finding it hard to keep the hope today 😞. Hugs to all x

Shanghai101 · 23/07/2023 23:46

From the BEAT website - not sure what the research is though or how they arrived at these figures.

Is it possible to recover from an eating disorder?

Yes. We are lucky enough to work with some very inspirational people and we hear some very uplifting stories of recovery. Research suggests that around 46% of anorexia patients fully recover, a 33% improving and 20% remaining chronically ill. Similar research into bulimia suggests that 45% make a full recovery, 27% improve considerably and 23% suffer chronically.

Your Stories - Beat

Read the latest blogs on eating disorders. Written by our supporters, they cover real life experiences including recovery.

https://www.beateatingdisorders.org.uk/your-stories/

Threeyearsalready · 24/07/2023 05:05

I've seen dd "changing" ED from always tendency to binge, to binging and purging, to increasingly purging to anorexia.
Recovery numbers don't look encouraging. Just worried what will happen when she goes to uni and beyond. What will happen when DH and I are no more available to help her....

Shanghai101 · 24/07/2023 07:34

I agree those numbers don’t look great but I think we need to treat them with caution as we don't know anything about the research etc. Everything I have been told assures me that with the right help full recovery is possible.
Are there any ED specialists on this thread? Other threads in Health seem to have nurses /doctors offering advice. I appreciate that EDs are very individual so hard to comment generally but it would be helpful to understand more about the chances of achieving full recovery and what families can do to increase those chances

myrtleWilson · 24/07/2023 08:14

@Bluebuddha10 I remember your early posts. Am so sorry you're both still in the nightmare. Severe, enduring and terrifying. Have you read Hadley's book - I thought of her when I read your post. Not sure that gives you anything practical to work with though. Would a consultation with Orri be helpful -(for you rather than Dd) just to see if there were any new approaches they could recommend?

@Shanghai101 i guess it depends by what you/we mean by full recovery. There have been posters on these threads who thankfully have come out of the quagmire relatively quickly and maybe it was a one time thing (sincerely hope it is) but I guess time will tell. ED campaigners like Hope Virgo still talk about working on recovery - that's not to say she is in any way in active grip of the ED but she's cognisant of being observant and reflective about the potential for the ED to stealthily reappear.

BagpussSaggyOldClothCat · 24/07/2023 08:39

The future is a huge worry. Dd is heavily dependent on her routine and eats fairly well as long as I'm here preparing her food, giving it to her on time and prompting her to eat. I worry about something happening to me, her leaving home, relationships that may not be good for her MH, employers that don't empathise, or if there's another pandemic or a situation where we couldn't get the foods she will eat.

Poor Nicky Graham couldn't cope with the huge upheaval of her routine during lockdown. I wonder how many more ED sufferers relapsed or were lost during that time. Routine and having someone with their best interests at heart keeping a watchful eye is at the heart of staying well for most.

heretohelp241 · 24/07/2023 09:00

@Shanghai101 I have studied EDs and worked with patients. It is hard to say. All the evidence points towards early intervention offering the best chances of a full recovery - but that isn't to say that those who have been unwell for a long time can't recover. Lots of people who have suffered from EDs go on to live happy, healthy and recovered lives. However, a large proportion will remain in a quasi-recovery - in that case we look at improving their quality of life as much as possible, keeping them stable and able to reach their potential as much as possible. Then there is another portion who remain very unwell and aren't able to live what we would call a 'normal' life. Lastly, there are those who die as a result of the illness.

As you all know EDs are incredibly complex and no two cases are the same. Whilst poor nutrition and weight loss exacerbates symptoms and worsens behaviours, many do have underlying causes. There is no one cause, but a collection of 'predisposing, precipitating and perpetuating' factors that contribute to the development and maintenance of an ED. Experts and therapists differ on their approaches - but ultimately the sufferer needs to find something that makes them want to get better. Even if it is something very small. Sometimes this will be a 'revelation' to the person and they become very determined to recover in a short space of time, on other occasions it is a gradual realisation and very small steps.

As for advice to families - don't give up on your loved one and try not to compare to others. No two recovery journeys will be the same. Also accept that there will be set backs - recovery isn't linear by any stretch of the imagination. The important thing is learning from set backs and putting things in place to overcome them and prevent them happening again in the future. Also, there is a lot of chat about being overly cautious when they seem to be doing well in recovery - I would take this as a good sign. Lots of people with eating disorders struggle with the fact that the support goes when they look better, even though they haven't recovered mentally. Letting your DC know that you are still there for them is really important in recovery.

I know on a previous thread there was a link to Orri, I don't work there but really admire their ethos. They do webinars which are open to healthcare professionals, carers etc and I would recommend attending them or catching up on vimeo afterwards.

I would also say check in with the immediate environment - probably something you are all doing anyway - but remove, or at least try your best to prevent, triggers. Things like friends and family mentioning anything about weight, diet, calories, 'treating themselves to pudding', 'skipping breakfast', 'lots of food' etc. Also make sure no one tells your DC they look better - this will always come across as 'bigger' to someone with an ED.

Be mindful of their friendships groups too - this can be tricky as your DC may be embarrassed about their illness and not want to discuss. However, teens talk about weight, weight loss and diets so it can be like throwing a sufferer into the lion's den. Obviously you can't shield them forever, but it is about trying to remove triggers whilst they are most vulnerable, then establish coping mechanisms when they are stronger.

I would also suggest encouraging your DC to think about their futures and what they want to achieve in life. Where do they see themselves in 10 years time if they recover? Then ask them to think about it if they still have an ED. Explore non ED related short term and long term goals that give your DC something to hope for outside of the narrow world the ED has created. You want them to start to establish an identity where the ED doesn't have any kind of role.

I have followed these threads out of interest every now and then - but obviously it is unethical to give individualised advice online. The above is all general guidance but I hope it helps you. I wish you and your DCs the best of luck with your recovery journeys.

Shanghai101 · 24/07/2023 09:34

@heretohelp241 thank you so much for your very comprehensive reply and suggestion to open up conversations around what the future looks like with/without the ED. I’m not sure how to protect older teens from triggers but it is something to think about. Thanks again for taking the time to reply

BagpussSaggyOldClothCat · 24/07/2023 09:43

heretohelp241 Thank you so much for taking the time to share your insight and advice.

heretohelp241 · 24/07/2023 09:50

@Shanghai101 and @BagpussSaggyOldClothCat you are more than welcome.

The other thing I would say is take care of yourselves too. Looking after a loved one is really tough and can feel incredibly isolating and thankless - especially when bearing the brunt of the ED's anger. I have worked with patients who took all their anger out on their parents during the ED, but went on to have really strong and secure relationships as they progressed in their recovery. The chances are, in time, your DC will see that you were fighting for them when they couldn't muster the courage/strength to fight for themselves. The very fact that you all participate in this thread shows how dedicated you are to helping your DC overcome this illness. You are all very strong, brave and admirable women (and men if there are any male parents/carers on here!).

myrtleWilson · 24/07/2023 10:24

@heretohelp241 thank you for your comments and insight...

@Shanghai101 on the visualising a future point, one of the exercises we did at home when Dd was beginning to explore recovery was to do a mind map type of what would a 'happy' Dd be doing and we revisited the mind map over time to demonstrate how far she was getting along. Also, keeping a visual prompt to look at during meal times can be helpful. At one point, DD was keen on thinking about going on holiday with the girls so we had a photo of greek islands and she'd have it near her whilst eating and we'd occasionally incorporate the future manifesting in the distraction techniques...

Shanghai101 · 24/07/2023 12:06

Thank you @myrtleWilson. That sounds like a good exercise to do with DD. We talk about plans etc but maybe having something on paper would be more helpful - easier to visualise

BagpussSaggyOldClothCat · 24/07/2023 21:04

Has anyone seen the Barbie Movie? Just wondering if there's anything in it about dieting, perfect body image etc? Dd is going with her friends tomorrow.

Threeyearsalready · 24/07/2023 21:27

No idea but dd is going with college friends on Friday. Just really happy she is going out with them as only third time she has gone out with them since starting college 😀

ItRainedForever · 24/07/2023 22:27

BagpussSaggyOldClothCat · 24/07/2023 21:04

Has anyone seen the Barbie Movie? Just wondering if there's anything in it about dieting, perfect body image etc? Dd is going with her friends tomorrow.

The only mention I can remember is from the monologue by America Ferrera's character (you can read the whole thing at the bottom of this article). Overall the messages are as positive as they can be in a movie about Barbies!

America Ferrera poses in front of a red and yellow background wearing a casual white suit and black scoop-neck shirt

Read the stirring monologue about womanhood America Ferrera delivers in 'Barbie'

Ferrera, who co-stars in 'Barbie' as Gloria, a lifelong admirer of the doll, delivers a rousing speech about womanhood in the film. Here's how it came together.

https://www.latimes.com/entertainment-arts/movies/story/2023-07-23/barbie-america-ferrera-monologue

Curlyhairedassasin · 25/07/2023 08:11

I have a question for those with DDs who did/do a lot of sport:

DD used to do an intense sport before falling ill. We had to stop it all. Weight recovery is going very well (I think DD is the heaviest she ever was in her life now) but we have not reached the target weight but getting there with well over 90%wfh now .

DD is itching to do sport again BUT mentally, our progress is very slow (non existent in many ways). She is eating the plan, but only the plan. she cannot even eat a single strawberry that is not on the plan. She is still on olanzapine and Setraline (guess will stay on the latter long term). She still needs intense meal support around all meals and snacks. The only difference to a few months ago is, that she will eat the plan provided she has meal support.

DD loved her sport but I am not sure anymore if any desire to get back is genuine or AN driven with the aim ro burn calories. If sport was big for your DDs, at what point did you re-intriduce it even if only at a low level. I feel I cannot see the wood for the tree and suspect AN behind every of her decisions.

NCTDN · 25/07/2023 08:48

For dd, getting back to her support was the driving factor in recovery. Not because she could justify eating, but because she was missing out.