Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@twentyonethirteen I don't mean to alarm you, but my daughter is the same height. She has never been that low a weight - and has been admitted to hospital 7 times. Are her other obs (heart rate, BP etc.) okay? Once a month seems very infrequent for a WFH that is that low. Can you push for more?

@Girliefriendlikespuppies @Valleyofthedollymix @NanFlanders

Thank you for your replies, that makes sense. I am not surprised she’s so low, she is visibly emaciated (again - we have been several times on this rollercoaster - 3 years and counting) and at the last paediatrician appointment on Monday (he is a senior ED specialist who has known my DD a while now) he was very concerned. Nearly admitted her on the spot, but ended up giving her the week to turn things around. I can’t see her doing it though.

Her obs (excepting temperature which is too low) are actually within normal range, heart rate 60s and no postural drop in BP. She gets monitored weekly at the GP surgery and they seem consistently OK, although some of her blood tests are out of range. I suspect this is probably because she doesn’t ever actually not eat, is having at a guess 1000 cal ish a day, and her weight, although alarming, isn’t drastically dropping. She has been hospitalised twice before in the past 3 years (on a general paediatric ward) and both times have been due to severity of restriction rather than solely her weight.

It just feels like this is never going to end. The toll it has taken on our family borders on irreparable. She was doing slightly better for a while after her last admission, last spring/early summer, but has just been gradually declining again since. Tier 4 referral was made months ago, but the wait is forever.

I try to take heart in the stories of hope I read, but deep down I am finding it harder and harder to ever imagine that being my DD.

It is just the most incredibly cruel illness.

Oh my heart goes out to you twentyonethirteen. You've been coping with this for so long. I'm only just over a year in with my dd but our family is being rorm apart (extended family just dont understand) and mine and dh's mental health has been affected massively. It's very hard to see a positive end to it. I honestly don't think my dd will ever be completely free and I'll never be free from the anxiety it causes.

It's all so utterly heartbreaking and steals so much from their and our lives.
Sending love and support to you and your dd.

@twentyonethirteen i also think she must be around 65%. Dd was the same age but 12cm shorter than your dd. At 36.2kg she was 69% and admitted to hospital immediately.

@Wintersea01 which uni is it? I did a lot of research before dd went to uni on their support systems. Luckily so far it's not been needed <crosses fingers that it stays like that >

Twentyonethirteen are you doing FBT? As others have said that's a really dangerously low wfh. If her bloods are iffy I'd want her in hospital as she will be high risk of heart or kidney failure, I would also hope that an admission would bump her up the list for a tier 4 bed.

Given she's 17 you need to get her in now as it becomes much more difficult once they're 18.

After 3 years you must be exhausted by it all, I know I am and my dd is not as ill as your is 😕

Nan did they section your dd in the end?

Love I hope all your dds are doing okay.

Hi everyone. I’m so sorry you’re all struggling and that your kids are so ill.

Has anyone actually ever heard of anyone properly recovering from being as ill as our children are? I’m starting to lose all hope.

After 20 months, my daughter got to 83% wfh. Yet despite the anorexic cognitions still being strong, and not ever eating anything without being watched and forced to, her team decided to give her a month’s “break” from treatment. Told her she was in control of her eating. So she immediately started restricting again. I am furious that they thought this was a good idea and furious I didn’t put up more of a fight against it.

5 days in I took back control, but she still lost half a kilo.

The team want to just carry on with the treatment break, but there’s no way in hell I’m just going to let her keep losing weight we half killed ourselves getting on her.

It feels like CAHMS are just making up their own narrative (that she’s burnt out with treatment) when she needs some actual bloody help.

I appreciate she is not in an immediately dangerous situation, but this is only because I am keeping her afloat.

I’m coming to the realisation that the so called experts have no clue how to help. It’s devasting.

Apologies for typos. I wish we could edit our posts!

Aranan I agree that is completely insane 🤯 unfortunately Camhs are so hit and miss. I wonder if they are actually wanting your dd to fail in order to get her an admission or something, I honestly can't think of any other reason.

Fwiw I absolutely believe recovery is possible but it is backbreaking work to get them there. Is your dd on any meds? Generally on this thread the most unwell children have needed medication (either antidepressants or anti psychotics) to get them better.

Thanks for your reply. She’s not on meds but the psychiatrist did say that we may need to go there if this experiment didn’t go well.

I feel stuck though - I can’t sit back and watch her fail. But if they weigh her next week and she’s regained or maintained, I worry they will take that as proof that she can do it alone, which she can’t. She’s still having to be topped up with Ensure and calogen even with my help!

@Aranan
I’m sorry to hear your experience. CAMHS never had any therapy available for DD during the 2 years we were seeing the nurse as DD did not reach the wfh threshold and there was a very long waiting list. Then at 18, DD was discharged due to age not recovery. There was no onward referral as there was a long waiting list.
We do cling onto the fact that all her friends from the same group who became anorexic before her, have now fully recovered. I don’t wish to sound glib as I know from bitter experience that this disease is horribly tenacious and doesn’t release people easily but one had private therapy which they responded to, 3 of them recovered in long term relationships! My DD is interested in neither atm.
It’s interesting about the medication mentioned on this thread as a potential route, though, again, as DD is an adult, we have no say in her treatment and DD is completely against taking anything (even paracetamol is difficult!).
I know this may sound a bit crazy but we also cling onto the progress being made in medical trials of psilocybin on depression and anorexia.

@Aranan I wouldn't be so foolhardy as to say that DD is recovered, but at the moment I would say she's living without anorexia. We do keep an eye on what she's eating but we let her have sleepovers, school trips etc where we can't supervise. This morning she didn't feel hungry so I let her just have yoghurt and fruit, something that I wouldn't have tolerated when she was in the grips of it.

It turns out I know a lot of recovered anorexics - women I've met through having kids. I always ask them the same thing: how did you get better? And they all say, I don't know, one day I just woke up and the world seemed to offer me that not eating did. Or words to that effect. They could never pinpoint a treatment or event that precipitated this epiphany.

DD had a lot of private therapy, something I know we were very privileged to be able to afford. However, it didn't seem to help and she was stuck bobbing around at about 45kg when she needed to be 50. Ironically, what proved to be the turning point was exactly what you've been through with CAMHS. She negotiated with the psychiatrist that she be allowed more independence around eating and mealtimes (eg me not coming in to school at lunchtimes, no more snack supervision - we just did breakfast and supper). Initially she lost a few hundred grams and they wanted to stop this experiment. We argued that she be allowed to continue. Her weight loss wasn't so bad as to be significant and life was a lot more pleasant for everyone. Then she argued that she should be blind weighed but we, parents, weren't to be told the weight either. Oh and that she should be allowed to do PE.

It was all very unorthodox and counterintuitive.

Within three months her eating seemed normal, her moods were better, there was less strife. I was thinking about the biggest change in her, other than physical, it's that she's funny again. She's got a brilliant sense of humour, is really observant, loves word play. I don't think she made a joke or laughed the whole time she was ill (18 months).

I think, for her, she needed to feel empowered, that it was her choice to eat rather than anybody else's. Obviously this doesn't work when they're immersed in anorexia. She was also taking 75mg of sertraline.

To this day I have no idea what she weighs and haven't since June.

BTW I'm not advocating this approach for anyone else, I can see it's unconventional and high-risk. It was just that we tried the other way and were completely stuck so it was worth a try in a fairly controlled experiment. I think what it proves is that there is no one cure and also how woefully under-researched the area is.

Thank you @Valleyofthedollymix for sharing. One of the problems that we’ve had over the course of my daughter’s illness is that every time she has gained weight, she has shot up in height, therefore an overall drop in wfh. It really has prolonged things and even now at almost 16, she is still growing.

The second problem we fave is that she has GCSEs in May. So I do understand why they wanted to try this now and not nearer to the exams. But she is also just not ready. They tried this weird her last summer and she tumbled right the way back to almost where she was at the start, it was hideous. I just can’t let it happen again!

I think one thing that worries me long term is that I know women who have never truly recovered. I went through this with a friend when I was the same age as my DD and it took decades for her to live a normal life. And even now she is haunted by it.

So thank you so much for sharing more positive stories. And for sharing about your daughter’s meds also.

And well done for getting your daughter through this. She sounds amazing.

Aranan to me it's crazy they would be suggesting handing any sort of control back while your dd is still so obviously in the grips of it. I would want some really clear evidence and a rationale from them as it feels like they are playing a dangerous game and ultimately gambling with your dds life.

I would be pushing for meds as well, it sounds like your dds anxiety is really high so something to take the edge off would help. I'm having a mind blank but there's a anti psychotic medication that's been useful for anorexia as it's quietens the internal voice - someone else will know what it's called!

My dd was handed back some control once we established a decent routine, she was being blind weighed and she had gone back to school. I negotiated a deal with her that as long as I was happy with the weigh ins I wouldn't insist on supervising her eating lunch at school. She was so desperate to avoid that!

She was well over 90% wfh at the point and I would have taken back control if she'd lost weight. I still prepare all the food to give her, make her pack lunch etc.

Dd's moods are hideous and getting worse even though she's sticking to her meal plan and the weight is slowly going on. She's rude and selfish and when we pick her up on it she tells us we don't care, don't listen and don't respect her feelings (the irony!). She's not going to college and barely sees friends. She spends roughly 3 hours a day showering and doing hair and make up - to not go anywhere 🙄

I know she's ill and can't help it but I feel like I'm being abused in my own home. Just because she can't help it doesn't make me feel any less affected by it.
Will there come a magic day when she'll suddenly want her life back and will become a daughter who I can spend time with without feeling completely exhausted/broken? I really need some positive stories today after a hideous morning.

(Sorry for the moan)

@Aranan thank you that's a very generous thing to say - DD is lovely and amazing, most of the time. I can't believe she's doing so well and I give her most of the credit for that. However, I cannot tell you how unbelievably unpleasant she was when she was in the grips of it. There was one remark she made about the pointlessness of my life that can only make you laugh and wince in equal measure.

This ties in with what you're saying @BagpussSaggyOldClothCat. I lost sight of who DD was for the time she was really really ill. I couldnt remember what she'd been like before and began to think that this was her, this vile, hurtful, sullen, joyless, violent person was just who she was. But it wasn't her, it really wasn't, I can see that now. But it's still so hurtful and I couldn't help but be affected by it. I'd never have let a friend, boss or partner treat me that way.

Hello everyone - can I join?
I am sorry to hear what you are going through at the moment and I hope it gets better for you. I am here because I think my dd 13yo is starting to develop an eating disorder and I don’t really know what to say/do? I don’t think she’s overweight at all, but she wants to know workouts to make her thighs thinner, wants to keep track of her weight and is limiting her eating.
She is part of a ice skating club and I think she wants to be slimmer - more like the others. Also there are many dancers/gymnasts in her year who are kind of influencing her. I really don’t want her to have an eating disorder and go through this. Do you have any words of wisdom?

Hi zebra ir definitely sounds like your dd could be at the start of developing an ED.

I would check her phone and remove any apps that track calories,count steps etc. Also check what she's looking at on social media.

If you have weighing scales in the house hide them away so your dd can't weigh herself.

Keep a close eye on how much she's eating and don't be afraid to push food, if she wants to do sport - she has to eat, make it non negotiable.

Anorexia is triggered in part by weight loss so it's really important to prevent weight loss. Lots of high calorie meals, full fat milk, add in a pudding and snacks etc.

Hi everyone. Just an update. My DD has been tube fed under restraint for two weeks now. An outside team brought in as consultants have recommended a Tier 4 referral, which has been made, but DD's team are telling her she won't be going and will be home in a week or so. DD has just started to eat small amounts, but has been explicit with me and the nurses that this is so she can go home and 'lose weight again'. Since admission she has tried to abscond from the hospital 4 times - once got down 4 flights of stairs before she was stopped. I just don't think she'll be safe at home. She ate nothing for 5 days before we persuaded her to go in - we'd been trying to take her to A&E since Saturday night, she missed an emergency appointment on Monday and was finally admitted (by which time she was very ill indeed) on the Tuesday. I've been invited to a case conference tomorrow. Would welcome some ideas on what to say.

Nan no direct experience, if you're on the fb group definitely ask on there as that's the sort of thing they're very good at as the moderators will have direct experience.

I would be saying what you've said on here that you don't feel you can keep her safe at home, and if they are sending her home that is a massive safeguarding issue. I would literally say that every time they mention her going home 'yes but I can't keep her safe at home.'

Gosh I'm so sorry @NanFlanders this must be very traumatic for you all. It's so utterly bewildering. It's so hard not to think, just effing eat you idiot and everything will be better. I think Girliefriend's advice is good - if you keep mentioning safeguarding, you've a chance of spooking them into keeping her.

@Zebrazz I think Girliefirend has given you great advice too. My daughter was 13 when she started using MyFitnessPal, she lost weight quite quickly but not dramatically and always appeared to be eating (because she was - she was having a normal amount of food when with us, it was lunch etc that she was skipping). I didn't realise about the MFP but called the GP when she went about three months without a period, though it was hard as they were still erratic anyway as she'd only started the year before. I got fobbed off and she was diagnosed 2 months and 2kg later with full on anorexia and a very low weight.

The things I regretted and kicked myself over were:

1. Not realising about the MFP - her sister had but didn't tell me.
2. Not being more alarmed about the evident weight loss. She'd put on loads of weight over lockdown so I thought she was just readjusting.
3. Not realising that at that age they quite often put on a substantial amount of 'puppy fat' in order to fuel growth
4. Allowing myself to be fobbed off by the GP - it didn't help that it was covid so a phone appointment.
5. Massively underestimating the amount of food that a growing girl needs. I think we get given the message about teen boys and their massive appetites 'oh they'll eat me out of house home' etc but double standards mean we don't expect daughters to have those 6 weetabix last thing at night etc.
6. Associating an eating disorder with eating next to nothing. They only need to eat a few hundred calories less than they need. i think she was eating about 1500 - which if it's all in front of your parents can look like a reasonable amount.
7. Being scared to talk to her about it. I think I worried that if I confronted her, I'd pathologise normal teenage behaviour and make it worse.

I think if suspect something, you're probably right. However, you sound much more on the ball than I was and if you act now, you've got the chance to avert. I would watch what she's eating and maybe try to talk to someone at school about lunches (discreetly). If you can surrepticiously keep a food diary, tot up how many calories she's getting. Look for odd behaviour around food - pushing it around the plate, cutting it up into small pieces, becoming interested in the nutritional information. DD burst into tears one day because she said 'nobody' eats breakfast. In retrospect, it was a huge red flag.

Valleyofthedollymix

Thank you, that really helps. The only thing keeping me going at the moment is the hope that my dd is still in there and I'll see her return one day. I'm a bit shocked by how low this has made me feel. Thank goodness for everyone here. We really need to hear that there is light at the end of the long dark tunnel.

NanFlanders

Once again sending love and support. So sorry I can't be of more help as don't have the experience. I hope the meeting goes as well as possible.

Hi Zebrazz Yes those are certainly concerning signs that an ED could develop but really good that you've spotted it early as early intervention really is key. Under no circumstances should she limit eating and you have to be quite forceful and get in control of all meals right now. Keep her away from the kitchen when cooking and make it clear you know exactly what she needs to be healthy. Comparing themselves to others is really hard and I wish I had a magic wand to take that away from all our dc. All we can do is model our own body confidence and rope in other family and friends to do the same and try to find good role models in the media, but sadly there are unrealistic images everywhere and it's impossible to shield them.

@Zebrazz I echo all @Valleyofthedollymix has said.
No 13 year old should be dieting unless medically advised to do so. They need huge amounts of cals for growth and puberty.and She is physically active.
Any restriction can lead to rapid weight loss. Rapid weight loss can lead to AN (in those with a genetic predisposition). Regardless of starting weight.
So take back control.
All meals prepared by and eaten with you
Snacks provided and eaten before and after training. And before bed.
No repetitive exercising to target certain areas.
If she doesn't comply No ice skating.
It sounds draconian. Her reaction to this will likely give you an idea if she does have an ed. Extreme reaction indicates probably. If she rolls her eyes and gives a oh mum but eats it anyway prob not.
I made a huge mistake tiptoeing round my 13 year old Dd worried confrontation would make it worse, allowing her to dictate meals and cook them. She was not eating snacks, secretly exercising along with her elite football training and her weight plummeted. By the time I took my head out of the sand she was under 5 stone and skeletal. What made me realise? When she threw toast I had put butter on across the room....
Well done for catching her early. Act now and she should avoid a full blown AN.

@NanFlanders so sorry to hear this. No direct experience but clearly she cannot come home safely. Thinking of you