Support thread 12 for parents of young people with an eating disorder

[greydoor]

Suddenly noticed the old thread is almost full and thought I'd make a new one.

Hi not been on for a few weeks. My daughters just broke down and said she wants to get better but doesn’t want to be miserable like she was last year. She’s adamant that she is happier now so I’ve sat her down and explained that she thinks she feels happier because the ED is telling her that and doesn’t want her to get better so is making her think she is happy. She said that this is not the case. Has anyone else’s child said the same thing??

Hi, I haven't been here for a long time either. A lot has happened with DD. I've been catching up when I can. Just wanted to say our DD has a very similar outlook to yours. She tells me she was very miserable a year or so ago when we got her wfh to 88% (highest it's been since initial weight loss) which is why she never wants to go back there. She's adamant it's not the ED telling her this either, and that it was the physical sensation of being a higher weight that she couldn't stand. I don't know where this leaves us but we must keep telling her to push through.

Please please don't blame yourselves for your dc having an ED 💔 weirdly I haven't really blamed myself for dds ED. There was a sense of inevitability about it that made me feel that whatever I'd have done she would have gotten ill.

Plus the fact that anorexia is a biological illness, almost all of the anxiety, irrational thoughts, ocd, depression is based in malnutrition and starvation.

It's no more your fault than if your kids had got cancer.

Please be kind to yourselves.

Mum my dd tried to tell me the ED makes her happy as well as cooler and more popular 🙄

I just stopped talking to her about it in the end as it was clear at that time she was not in a place to have any insight into her thoughts.

Now she's in a better place I'd hope she'd see things differently but I'm not sure, she's always defended the ED and I think part of her still feels it has in some way helped her 😕

@lyriccat hi so sorry u are going through something similar. It’s so hard isn’t it we’ve only just started this journey and I’m finishing it so difficult so can only imagine how my DD is feeling. I’ve just referred myself to talking therapies as I need help myself with my anxiety and how to deal with my emotions as I get very emotional. I need to make sure I’m ok so I can help my DD the best I can as we have a long road ahead.

Weve had our CAMHs app today and she maintained so that’s not helped as feel like I have failed somewhere this week.

Hi @ Girliefriendlikespuppies I’m hoping further down the road she will see it differently. My daughters really shy and quiet so hates attention. She gets really defensive I’ve I said somethings the ED she snaps and says it’s not and that people just done listen to her or believe her

I don't feel like it's my fault she developed an ED, but I do feel responsible for the relapse.

I didn't push hard enough to get enough weight on her last time. I'll try not to make that mistake again.

I’d also like to echo this post. I don’t think it is my responsibility that dd developed an ED. It is simply one of those things. Her ED is a combination of factors but triggered first and foremost by her desire to go veggie. I didn’t want her to because she has a history of being very fussy. Rather like Prosecco’s ds I only ever gave her food she would eat but I couldn’t have stopped her from refusing to eat meat. I wish I’d put a deadline on things and discussed it more. But I wasn’t to know the consequences and it’s hard to rationalise with a determined 15 yo and any deadlines are unlikely to have worked.

I recently had a vile woman contacting me to blame me for dd’s ED. It really upset me. But it’s not the first time she upset me. Last time she blamed dd for something she didn’t do so there’s history. I managed to get a therapy session at short notice and the therapist’s exact words were ‘she sounds pathological’. What I’m saying is that someone else blaming us for our children’s illness @Proseccoismyfriend is really clueless to what is actually going on so please do not pay heed to what they say. I put a lot of effort into slowly expanding dd’s tastes and diet, which has gone back to about the point of when she was a baby/toddler but a lot less nutrient rich and zero carb.

Today has been a hugely emotional day. I have cried a lot. Dd has completed all but 2 GCSEs and I am so relieved. I know in the scheme of things, they’re not that important but they are for her as she’s worked so hard. She has been full of angst about them and about her prom dress, which I bought off vinted. After her exam, I took her to a prom dress shop today and bought a brand new second dress. I can sell the other dress. It was expensive and dd objected as it’s a waste. But we finally got the chance to reconnect and for her to understand that I want her to be happy and not full of angst on prom day, that her needs are important. She let me hug her and sit on my knee. I talked to her about when the ED is telling her I hate her and she hates me to remember the prom dress. It didn’t help much with the eating this evening but she is slowly building her confidence in me and letting me in a little more. She’s now eating a little cheese with carrot sticks and houmous and I said she needed to start being challenged on the type of foods she will eat. This evening she agreed to go to a restaurant of her choosing twice this half term with me. I hope she succeeds as she is struggling to eat out.

I meant to add, I hope you find something useful to suit your needs @greydoor. I know what you mean about being able to do something. I’m actually pretty good with other people’s teens and have a great relationship with dd’s friends. I have loved and supported them when needed and they are working with me trying to help with dd. Dd’s friends will happily spend time with me even without dd. Just I don’t feel so good with my own. It’s also so much easier to be objective with dd’s friends… because they tend to listen to me in a way that they don’t listen to their parents and not answer me back. When dd was younger, someone gave her the book ‘the parent swap’ about a teen, who discovers a scheme to dump her parents and choose different ones. Maybe I need a teen swap lol.

I am not sure where we are heading atm. DD's self harming is getting worse. had a few extra emergency appointments with the Ed team in the last few week. being referred back to social services over safeguarding concerns as it keeps happening and DD is deeply unhappy at home. She massively struggles at home esp with the elder sibling who takes up a lot of my attention (ASD/learning difficulties). We were supposed to finally get respite after I had a major breakdown early in the year and SS got involved - as everyone agreed we need help with my older one esp to free up some quality time for me to spend with DD with AN. Roll on panel which decides it's a no. School nurse/councelling have rejected DD as well as she sees the ED team (who is very supportive and trying hard but DD wont engage with them). Weight dropped also a tiny bit at the last weight check. I am just so bloody fed up with it all. Apart from the ED team (who can only do so and so much esp in relation to her mental health - she is suicidal too by her own admission), nobody seems to give a shit. It's breaking DD, it's breaking me and our whole family tbh. And now SS get hauled back in on top. It's just going to cause a massive amount of stress. The process earlier in the year was so intrusive and none of the promised support happened. So what's the point.

anyone else been in a similar situation esp SS due to self harming?

We have a similar situation @Curlyhairedassasin self harm got worse alongside the eating disorder not getting better. (Self harm cutting needing hospital treatment several times per week, suicidal thoughts and several attempts)

the ED team felt bit out of depth with the level of self harm so regular Camhs stepped in to deal with that side of things. Is that something your team could look at? They have offered various strategies and therapies to manage it and work well alongside the ED team as both aspects are still equally as poor and need intensive support.

SS we’re involved but said Camhs are the specialists so leave it to them 🤷‍♀️

Hi there, I’m new 👋
My 13 y o has just been diagnosed with anorexia. She will have fortnightly weigh ins, and monthly check ups with the ED nurse. I don’t know if this means she has it mildly? I absolutely hope so. Her weight isn’t that low, but she has had huge symptoms. She has been fasting and purging, and is still growing so her body just couldn’t cope. They have advised we are looking at 4-5 months for therapy. It’s all very new and frightening at the moment. I am so so worried for her health. She is destroying her body but I am pretty sure she is secretly pleased. She seems to talk about symptoms with pride. She sees me as supportive which is something, and we have been able to have some good chats. Her anxiety is through the roof, and she is especially anxious of her siblings, and general household noise.

How much have you shared with younger siblings? She has two brothers, 11 and 9. The 11 y o is massively overweight (I have been ill for the past two years; it’s taken its toll on everyone) and is on his own journey of exercising and trying to eat healthier. He is where he is from hitting the cupboards, and has real issues about others having more than him, but I have had a chat that his sister has ‘issues with eating’ and he has been OK so far about suddenly having snacks in the house, which at the same time are not for him. They really don’t get on so I actually begged him to behave with her during a particularly tense dinner. It was a bit much really, but there has been complete understanding from him ever since. I am obviously really worried that he might follow suit in a few years time, and have been hugely mindful to focus on him ‘improving fitness’ and saying that he will grow into his weight. Which he might do, but only if he doesn’t put on another gram until he is 6 inches taller- he’s already taller than me. He has been talking a lot about wanting to lose weight, and not liking the way he looks.

I haven’t really said much to the 9 year old, other than that his sister needs to eat more as otherwise she won’t get better. (She has been ill for months, we just didn’t understand why).

I am really concerned about the long term effect on both boys. The 9 year old was suddenly talking about how calories are ‘bad’ this evening. Obviously I have corrected him but he is a sponge so will be soaking up parts of what’s going on, regardless of how careful we are.

Hi @Worriedmummmm I found Eva Musby's book very useful in the early days if you haven't come across her already. Her website is good too.

I also really worry about the impact on my younger dc. They pick up so much no matter how hard you try to hide it.

My dd has just weighed herself. She’s 167.5 tall and 49.5 kg. 2 months ago she was 54.6 then put on almost a kilo in a week over Easter to 55.5 meaning that she’s lost 7 kilos in less in that 2 months… or 6 if we are counting that as easy weight on and off…

We have the ED clinic on Tuesday. At this weight she doesn’t have long before she stops functioning.

thanks @AskAlexanotme . So sorry to hear you are in the same boat. We will be seeing the ED psychiatrist next month but I am not sure camhs will see if we are under the ED team (seems to be only one service we can access, not two where we are).

/@Mummyoflittledragon that is a lot. how much is she eating at the moment? 3kg drop in 3 weeks landed us in the HDU last year as DD's heart couldn't cope anymore. of you are worried, I would've tempted to get her checked over at a&e (MEEDS checklist). She must be heavily restricting. Also, have you not had weight checks with the ED team since Easter? nobody noticed the drop in weight in such a long time? or could it simply be an issue with the home scale and that the home scale is off?

@Curlyhairedassasin
Thank you for responding. I see you’re dealing with a lot yourself and I really appreciate it and I hope you find a way forward with your dd.

First appointment with the ED team is Tuesday. It was delayed because of every date offered before that fell on a GCSE day. I didn’t realise the amount she’d lost tbh. I thought it was far less. It’s been such a struggle to get her through exams and I know exams aren’t that important. They just are to her. Unfortunately I didn’t fill the forms in and half of them have expired (didn’t know there was an 7 day deadline) and it’s bank holiday on Monday so we will have that to deal with on arrival.

Dd is in absolute denial. She’s gone to a festival today. Her friends all know the deal and she’s got a lot of food and they’ve all been instructed she’s to sit down, not much walking... She will probably manage more than 1000 calories today. Most days it’s 400-700 so heavy restriction and she will only do this if I allow her to go dancing. I sense she’s reaching the end of being able to go on dancing and I may have to admit defeat and wait for her to stop eating at all and she will then be hospitalised. She’s not trying to lose weight btw.

The home scales are the only ones she’s been weighed on and are only a few months old. I replaced the old ones, which fluctuated slightly but based on my own weight, old vs new, they are accurate.

Further to my post. That makes it look as though I’m not taking it seriously enough. I’m concerned about her medical condition. If she goes to A&E she will have a seizure (reflex anoxic seizure, her heart stops and restarts) and it will be game over in terms of eating. A seizure in A&E was the big trigger for the massive reduction in food intake.

ah, I see @Mummyoflittledragon .

tbh, with so little intake and such a big loss, I wouldn't let her out and do things. my ED team would probably instruct bed rest (depending on WFH and obs) but I get it is all much easier said then done...

Does your DD not gave a diagnosis of AN? Just thrown by your comment that isn't isn't trying to lose weight.

Tuesday is almost here. I hope they have some real suggestions as to how to move forward. But the high amount if weight loss in such a short time would worry me.

@Curlyhairedassasin No no diagnosis as this is the first appointment. Idk if it will come under ARFID.

This is in large part trauma based. She went veggie 8/9 months ago and the restriction happened from there. She is someone, who shouldn’t be veggie as she’s always been a picky eater. She doesn’t appear to be able to process the veggie proteins and wouldn’t eat enough eggs. She obviously needs meat. I am the same. The result will have been lack of b12 and iron, which has suppressed her appetite and a vicious circle of eating less resulting in a change in gut bacteria. Then A&E sending her over the edge.

She doesn’t have any form of body dysmorphia, not purging as vomiting induces a seizure, is totally honest about what she eats. Just doesn’t feel hungry. Her stomach hurts if she eats. Doesn’t deny when we talk about a voice in her head telling her not to eat.

Wants to eat carrot sticks, grapes and houmous only. Will eat - roasted carrots and onions, guacomale, crème Fraiche, cheddar (ie fajita wraps MINUS the wrap or chicken), half an egg or cheese sandwich for lunch if at school but that’s stopped now, sour cream and chive dip, nachos, Greek yoghurt. I’ve shopped around and am buying the highest calorie of each of these and Ocado stocks the best ones. My bill is extortionate.

She is eating less and less. It’s getting worse. Today she will eat well. Here friends will make sure of it. And some of them have nearly finished their exams… they may be able to save her. But she needs urgent counselling. Dd and I have a 20 min chat with a company on Wednesday.

I am shocked you’re saying bed rest only. I will ensure she stays at home Monday. One of her friends, who has had therapy has said she will come and talk to her.

She was 67 kg the beginning of April 2023.

I have no experience with these sort of things. Would she take shakes? That's are some high calorie shakes the GP/ED can prescribe?

I’ve tried to get her to take shakes and even vitamin tablets. Total refusal. Will only drink diet drinks or water.

I have just been talking to my dd’s friend and a friend of hers is with her. The friend’s mum works with people with ED and suggested that I buy nutrient powder to mix into dd’s food. Idk if that could work mixed in her dips. I know someone, who could give me some advice on the best stuff to add so I’m going to contact her now.

@Mummyoflittledragon sorry to hear what you are going through. Very similar to our story except our DD rapid weight loss was when she was at a much lower weight after a couple of years of maintaining at a low weight. However, rapid weight loss is a red flag. Early intervention seems to be key in stopping anorexia from becoming entrenched. Unfortunately, in our case early intervention did not succeed and she had to hit rock bottom before engaging with treatment.
It seems to be widely accepted that many people with eating disorders become vegetarian, I think it’s a way of restricting which is seen as socially acceptable. Our DD was also given a diagnosis of ARFID for a while.
It is good that your DD talks to you and can tell you how she feels. And it is great that she has friends who can support her, as you rightly point out they could be the motivation she needs to recover.

Thinking of you and everyone else worried for a loved one with an ED

@Worriedmummmm it must be very difficult trying to support two children with very different but equally concerning needs. If you haven’t done so already I would get help from a family therapist specialising in EDs. They will be able to help you with talking to your youngest child as well as help you navigate one child needing to exercise and the other child needing to gain weight. A dietitian might also be advisable. Wishing you luck as things can go downhill whilst waiting for therapy. There is a lot of good information online, particularly Eva Musby.

Can I just ask ppl who go to CAMHS do your DS or DDs have apps at the same time and day each week, my DDs change each week sometimes first thing when she’s just had breakfast and sometimes in an afternoon when she has had breakfast, snack, dinner and pudding. Surely this makes a difference on their weighin and should be the same day and similar time each week or am I wrong in thinking this

Thanks @Shanghai101. I am glad you found a way forward. I fear dd may end up being the same wrt engaging only once things get critical. A friend, who is having therapy for a trauma in her life wants to come and talk to dd about her experience with counselling to see if that will help dd to get on board and has suggested tomorrow to me. She is quite forthright. Dd has loose plans with to see another friend. This other friend doesn’t know about the ED and after her weigh in and the festival today, she isn’t going to be allowed to go to meet him. She must rest and this friend is really on the ball with it. I just have to make sure dd doesn’t find out we’ve been talking as she doesn’t like me organising play dates for her as she puts it.

Dh calculated dd’s wfh. Based on her being 16, which she almost is, she’s 81%. That doesn’t sound too bad until factoring in that she’s a dancer, horse rider and sporty so obviously toned. She also used to be over well over 100%… I didn’t ask dh to calculate. But I said upthread she was 67kg in April last year and she’s grown a little since then. She is still walking far too far as well. Despite my telling another friend not to go far with her, she clocked up just over 21k steps on Friday.

I know all the exercise needs to stop and idk how to make that happen as she will just bluntly refuse to eat. She’s likely eating at least 1000 calories today as she’s taken the food, which thus far has saved her but she doesn’t eat it frequently enough. Once, sometimes twice a week.