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

[Mummyoflittledragon]

New thread. The old one is full…

Hi we are in a similar position but it's only our first admission. We also had to ask the GP to be referred to the ED services and by the time we were seen she was very poorly.

Are you with your DD pretty much 24/7? I'm finding that although they said there were strict rules regarding meal times it's left to me to ensure she eats the meal plan.

We are allowed to leave the ward but not the hospital and only with wheelchair, but I'm not sure maybe that will depend on the obs readings? We were told a HR of below 35 would mean admission to high dependency instead which I guess would be a lot less freedom. Luckily we are hovering around 36 as the lowest reading at thats when sleeping.

I asked that same question to the doctor and she said with some people the readings improve within a few days of following the meal plan but it's unpredictable. We are day 4 and it hasn't improved yet. Its a bit demoralising when there is no improvement but I guess just keep on going.

@ThatSparklyOliveBird
Hi, I glad you’ve found the comments useful and I am sorry you’re finding your dd needing to be admitted for a second time. Idk how long heart rate takes to increase. Dd won’t do medical obs, but I did get some done in 2024.

All I can say from looking at the readings I have noted for dd (I took her twice to a cardiologist privately in 2024), it increased by about 7 points in about 3 months.

In that time, dd lost weight and put some back on again and I’d say she was around a kilo heavier than the first reading. But that could have been the kilo that made all the difference iyswim.

@Pearl97 and @CuppaTandBicky thanks both, she was only in for a week the first time and honestly we both think she was allowed home too quickly, her refeeding bloods were normal and she was following the meal plan so we were sent home with just a weekly follow up. On that admission it was the same as for you @CuppaTandBicky, with all the pressure on me. Having now lost more weight despite my best efforts I feel the ED team are taking it a lot more seriously this time, and we're getting meal support for every meal and snack, either from them coming in or the ward staff. It's now so much easier for me as I'm not the bad guy, and they've already said once home daily support to our home will continue, so I'm feeling much more positive overall. It's scary we've got to this point, with cardiac monitoring needed overnight, but her heart rate didn't drop below 40 last night 3 days in so must be going the right way!! Think we're seeing the ED consultant tomorrow so will ask her about getting out a bit more then, and how much the numbers need to change:) hoping for a positive week for everyone ahead!

That's positive about it staying above 40. We are still waiting for that. The night monitoring is brutal because it has to make a sound whenever it's below 40, which is just whenever she sleeps!!
Have they said they'd like it to be around 50? I think that's what they've said to us but they've said so much stuff I can't remember!

Is she getting on ok with the support from other staff? It must be a relief for you. I just can't imagine my daughter complying with anyone else as she cannot stand eating when others are around

Thank you everyone for the advice and support.

I do think the ED team are serious rather than threatening, we’d already had threats previously. I just wish they would consider something to help her with the distress - she hits herself and causes bruises and scratches - it’s really bad. They don’t seem to take me seriously - maybe I need to get more graphic with the descriptions or they need to see one of the episodes themselves.
i guess I will find out on Tuesday where we are at - if I possibly can I want to try and delay the intensive treatment for a few weeks. It would be a lot less disruptive if I could have a few weeks - there’s so many important things happening in our lives for the next month or so.

as for private - it is priory I have been referred to by insurance. The problem was that they sent us to the wrong branch and it took a week to figure that out and it’s still not fully resolved.

@ThatSparklyOliveBird and @CuppaTandBicky sorry to hear you are both in hospital. Hope your DDs weights and heart rates pick up soon so you can get out and about. I imagine it’s horrible just being stuck on a ward. How do you pass the time?

She isn't much liking it however is a very 'good' girl at school and not a rule breaker, so isn't kicking up a fuss and trying to just get on with it, obviously with some level of upset, but managing. She's been a huge negotiator with me recently which has been part of the problem, but she knows with the staff she has to eat what she's given, so seems a lot easier all round.
Hoping the above 40 rate wasn't a fluke, and we get the same numbers tonight! Hope your daughter's levels start to climb soon x

That's great she sounds like she is complying. Are you managing to get some time to yourself then? I'm in a dilemma of I really would like to sleep in my own bed and us both have some space to ourselves but she is too anxious for me to leave (I would have to stay for supper and get there early for breakfast anyway) I wonder with time I may get maybe 11pm - 7am at home but it's impossible at the moment. And if I did do that would I be laid in bed wondering/worrying what the numbers on the sats monitor were all night? 🤔

@CuppaTandBicky if you’re allowed home I would. I wasn’t allowed but if you are I would take the break. Even if you don’t sleep well you will be showered and rested. You have to look after yourself too. When you get home there’s a lot of intrusion in the house, any time you can get to yourself is good. Your daughter will be home 24/7 when you get back which was very alien to me. She was usually at her friends or sports clubsc so having her home was difficult for us both.

@ThatSparklyOliveBird it is great your daughter is cooperating. There is a lot of hope this will continue at home.

@10YellowTulips as I say you do have rights. It will depend on how poorly they think your daughter is. It is always worth telling them how you feel and what you wohle
lkle to happen. They may not agree, but I have learnt you must ask.

@10YellowTulips
Have you figured out which one? It may not be your insurance company. The Priory itself didn’t know what it was doing 2 years ago. I was self referring.

The forms came from North London if that helps. I’ve looked it up in my emails. They wanted to do a triage assessment, then realised this wasn’t necessary, because it’s ED and it was very obvious / specific what dd needed and they would go straight for a face to face assessment in Birmingham. Dd wasn’t diagnosed (still isn’t), so this was for a private assessment, so it may be different for you.

It took so long that in the end, I went with the ED coach. She used to work as a MH nurse the Priory anyway. We were self funding. So it was cheaper. The only thing is we didn’t get a diagnosis. But no biggie as dd wouldn’t work with NHS CAMHS.

As for us?
Just needing a moan. The agreement to go on meal plan for the holiday lasted one day. Ie the day after the holiday was booked, I reminded dd of the openness required. She griped but told me. And she ate a full morning snack that day. The next day it was as if the agreement had never taken place. ‘I can eat what I want, when I want. You can’t stop me.’

Dh and dd are in London today. And I tried to get him to put going to London with her on the line if she wouldn’t agree to meal plan today. All we are asking dd to do is to add a pain au chocolat to morning snack as she only eats a tiny amount mid morning. And this battle has been going on since the end of January.

I know for an outsider, wasting over £100 or whatever it is on 2 tickets to London seems ludicrous for a pain au chocolat. But that’s the reality of living with ED. The money spent on the train is a sunk cost. And that’s only one tiny bit of the battle, because she needs to go back onto proper morning snack meal plan. This is just stage 1. She needs to be eating a balanced diet.

Idk if she’s had the pain au chocolat. I imagine not. And dh wanted to take her to a restaurant for a proper lunch. I guess he worked out a plan with the ED coach, but I don’t think he gave dd a heads up yesterday on the expectations. You need to tell her the day before! So they had sandwiches at Pret.

And this is why he can’t take her away without me anymore. Because he brings her back in an awful state and I have to turn her around from relapse. And she’s now highly resistant to all the techniques I learned to save her. ‘I’m an adult’. Well, she is almost. So it’s going to be fun tomorrow… because she’s got no reserves. And you can instantly tell if she’s eaten enough or not.

As for the booked holiday, she’s saying ‘I’m going to be an adult, you can’t do anything. I’m going to leave home as soon as I’m 18, you can’t stop me. I’m going on this holiday. I’m paying myself (we said we’d pay but she has decided she’ll pay and not do meal plan). I’m going to block you. There’s no agreement in writing.’ And lots of of other stuff, nastiness to me of course as she’s an angry anorexic. And all targeted at me as I’m a big big threat to the illness. Dh just wants to cave on everything as she will be an adult soon and will be out of control. But you can’t. This is the moment to get it right. We have a few weeks.

As for the plan now? Obviously dd is going to be needing to be eating enough to go on that holiday with her friend and family. And I do have a plan. It’s just when I action it. But I should have listened to my gut when I was astounded at how readily she agreed to the terms.

She also has the other holiday in 6 weeks just with her 2 friends. I was relieved getting her back onto meal plan. Now I’m increasingly worried.

Sounds stressful @Mummyoflittledragon it must be really hard at that age when they are almost adults.
On the plus side she seems to be enjoying life and has friends. I know this can go hand in hand with social isolation. I honestly don't think my daughter has one single friend at the moment. It breaks my heart nobody will even likely notice she isn't at school so just hearing of your DD wanting to go on holiday gives me hope. But it must be worrying not knowing whether she is eating a safe amount when she is off having fun.

@Pearl97 good to know about rights and I will be asking questions and speaking up for what I think would work for us. Fortunately my DD has recently had a full physical at a&e and is still just about a healthy weight. The main concern with he is the trajectory of rapid weight loss and her eating almost nothing.

@Mummyoflittledragon it’s north London priory my insurance suggested and who said they don’t have a suitable clinician. They will send us to another priory now. I’m hoping they will provide the middle ground that feels right for us at the moment.

must be tough with your DD dangling the adulthood card and wanting to listen to her ED instead of doing the right thing. When does she turn 18? Fingers crossed you can turn it around. It’s good that she has friends though - hopefully it will give her motivation.

my DD is like yours @CuppaTandBicky and is quite socially isolated. She’s struggled with friendships through secondary and it’s made her really lose confidence and I think has probably contributed to the ED developing. She recently changed schools because she was struggling so much socially at the previous one. Unfortunately the new one is not much better - I think dd just lacks confidence to put herself out there and really takes any setback badly. She does have some friends but she’s incapable of seeing things in a positive light and keeps saying she has nothing to get better for. It’s heartbreaking.

I agree I very much think my daughters struggle with self esteem and friendships has contributed to this in a big way. It is hard to motivate someone to get better when their baseline life is quite miserable.

Celebrating a night of slightly improved HR and BP readings. It's taken 4 days of following meal plan. Hoping things will continue to improve now. @ThatSparklyOliveBird hope all is well with you guys?

Your posts resonate with me so much @10YellowTulips and @CuppaTandBicky 'It is hard to motivate someone to get better when their baseline life is quite miserable.' This is exactly it for my daughter.

She's also quite socially isolated and was struggling for a couple of years before this. She also knows to recover from the ed she has to feel worse at first and she absolutely cannot face feeling worse than she already does.

I honestly don't know what the answer is for us. There doesn't seem to be any help for solving that bit of the puzzle.

Glad to hear of the improved HR and BP though, that's really positive.

Thankyou.
Being here pretty much 24/7 I've been thinking a lot... The help just isn't available for kids who are not in dire situations. My daughter has probably needed help for a long time. And we tried to get it but were told she never met the referral criteria for mental health support.

School tried but it was only quite weak things here and there, and they seem to have bigger problems, the kids who are more severe. I feel like she was one of the lost "coping but not ok" kids.

I'm not sure what support will be available as regards the problems that led up to this, or whether it'll just be a case of tackling the anorexia and getting her eating. Obviously they will feel better when they're not malnourished but what then?

As I've been passing the time on thinking I've wondered about private psychotherapy and medication for depression... They're my only ideas so far.

I guess I can't see much beyond the immediate problem of sorting out the medical danger first....

I feel really sorry your daughter is in this situation too @Weightlossworried

Oh that all resonates too - she was well behaved and did well academically so I just couldn't get enough help for her at school.

Unfortunately with this illness you absolutely have to focus on the medical danger bit first.

CAHMs have said they will do therapy when our DD is close to weight restored to help with all the reasons behind the ed. I just don't know what we do in the meantime to help her mentally.

I hope your DD continues to make progress. I do a course with Beat for parents and they tell us to look for 'green shoots'. You've definitely got some there with her improved obs

Ah that's good that CAMHS have mentioned support after the weight restoration.

Another trouble is getting them to actually accept help. That's a big hurdle to get over.

In the meantime the only things I can think of are watching box sets, art, me trying to be funny (and usually failing), planning on maybe some shopping trips and concerts once she's fit enough... Just trying to make quality time with her that she can get some enjoyment from.

I am sorry your dds are all so socially isolated. I understand that must be a massive strain on you, becoming their everything. What you say about your dds is heartbreaking, especially not being missed at school. I am sure some people will realise.

My dd will be 18 next month. Her ED started at the beginning of year 11, so almost 3 years ago. At that time, dd decided she wanted to become the most popular, the most well liked, the most beautiful. And started skipping lunch.

For dd, it’s all about appearance. Being constantly in contact with friends online, on the phone and meeting up to have fun is stopping her from recovering. She wants life to be a big, long party. But what she actually needs is some solitude and to learn to sit with discomfort, to like and love herself. But she won’t slow down. Because that would be too hard. And whenever she’s doing anything, she forgets to eat or take care of herself, because eating isn’t fun.

It’s kind of 2 different sides of the same coin in terms of coping mechanisms.

@10YellowTulips
Your dd can still be very physically and mentally unwell and within normal weight range, so please keep an eye on her. Although dd was underweight, she never got down to the low wfh some kids get down to. Due to her natural build, dd was very physically unwell, had no energy, very cold, developed Reynaud’s etc. ED services are supposed to recognise this, the starting point is very important.

My dd is now within normal weight range, but definitely not normal for her. For if it were normal, she’d be recovered both mentally and physically. And she is not. She has nowhere near as much energy as she used to. And mentally still not well at all.

I hope you get somewhere with The Priory.

@CuppaTandBicky It’s good to hear your dd’s BP and pulse are heading in the right direction.

@Weightlossworried
It’s great that your dd recognises she’s unwell even if she’s not yet ready. Please just keep giving your dd loads of love. She will get there.

@Mummyoflittledragon it absolutely is like 2 sides of the same coin. It must be a very difficult line to walk, keeping those social connections going but now allowing that to impact on her physical health

Hi everyone, a question regarding hair loss which I know is a common side effect of AN. My DD is in very early recovery stages, and has now stopped all exercise for around 6 weeks, and been eating 3 / 3 since that time (although not as many calories as the meal plan, but getting close to). We have only just seen weight gain for the first time last week with an increase of 0.8 which was a relief. However, for the past two days she has noticed a massive increase in hair loss and is starting to panic as she's not had this symptom before, and was starting to think she was moving towards recovery. Has anyone else experience of this happening?

DDs hair is taking a little while longer to recover too.
I had hair loss with a health issue a few years ago and was told that response is delayed. The trauma that causes the loss tends to be a while before it actually falls out. There are cycles of growth and loss naturally and when something interrupts that it isnt necessarily seen immediately. I cant remember the details buy that was the gist
So if your DD is recovering her hair will start to reflect that, but in a little while longer

@Raspberrysins hair loss can be a symptom of anaemia as well as a few other things so it would be worth asking the ED team about getting bloods checked. Is she taking a decent multivitamin? Dd was told to take an A-Z vitamin (which she did periodically) vitamin deficiencies can also cause hair loss.

I agree with Girlie about taking a decent multivitamin. Until dd refused to take supplements at the start of the year, she took one from Nutri, which is really good: https://www.amazon.co.uk/Nutri-Advanced-Essentials-Multivitamin-Vegetarian/dp/B09MS8Y216/ref=sr_1_1_sspa?crid=7LA8Z1ZI9E77&dib=eyJ2IjoiMSJ9.s-xphBgs5_C6nBLwcpoCMauLfAgwWWv-s9iDzuyJ7hhWbqrA-_VfsVHFJBHaGBfNm7mSZlsgNEk_SmSklX2wAJ4sDChGiF8EpRF7xIJYBFIrN3IMASKyWM2sDbtoyvZJ7viV41wdGfptq3LFxnsQ6ewS-x-Wv_uivGcKg9MFaYo3jVTctAGTDOddgHbOPQNYOUnH2HWziMaAXyIzr__dqTVXECNEUTqemz0bFGICF1Y9JEa-Eip2ffz72XVqbSbUjcPsRiPlYm4rI_rlH-QvhXoZDj5yLiTHo4Pxij4Ipqc.z0bT37j6agwJy2nexOPRIhBeyiS9PpzIxkI0Yvi_Tj4&dib_tag=se&keywords=nutri%2Bmultivitamin&qid=1780362160&sprefix=Nutri%2Bmulit%2Caps%2C117&sr=8-1-spons&aref=ACk1S3ri9i&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1

If your dd’s iron levels aren’t optimal, but not needing separate iron supplements, Nutri also do one for pregnancy, that has increased iron. You can get that on Amazon as well. I used to alternate between the two every other day.

I’ve googled the delayed response to trauma. Trauma puts up to 30% of hair into a resting period. Hair rests for 2-3 months before it actually falls out. So this is perhaps why it’s happening now. My dd’s hair also thinned considerably and took time to grow back. Her hairdresser said you can always tell if someone is or has been restricting from their hair condition.

The weight gain must feel good. Hopefully this will continue.

@Weightlossworried
Yes. It’s like she’s trapped on a hamster wheel.

We were prescribed forceval by our ed team/dietician - they're pretty strong multi vitamins I think. Might be worth asking about something like that @Raspberrysins

I'm finding my CAMHs appointment jitters are setting in earlier and earlier. We don't have the appointment until Friday but I started fretting about it yesterday. I think I'm finding it hard because I don't have any idea how it's going to go. DD eats a consistent amount - around 75% of what's on her meal plan - and yet her weight is up and down constantly. Week before last was a drop of 1.4kg and last week a gain of 700g. She ate the same amounts both weeks. The nurse keeps saying how worrying this is but I don't know how or why it's happening so I don't know how to stop it.

Any advice from anyone who experienced similar would be gratefully received!

Morning, oh that's interesting about the hair loss @Mummyoflittledragon , I've definitely noticed my daughter's losing a lot more hair recently which would tie in with her significant weight loss for the last 2-3 months.
Our update, we saw the consultant yesterday and had her first weigh in as an inpatient, only gone up 0.1kg despite all the food, but at least it's up, not down! They're getting stricter with what she eats, such as removing the slightly lower calorie options from the snack list, unfortunately she knows the calorie count for absolutely everything! Heart rate still shooting up when they take a standing BP so think we're stuck on the ward with no trips downstairs for the time being. But, positive thoughts, she's going to eat everything needed today and fingers crossed the weight increases again tomorrow 🤞

@Weightlossworried I would ask for a different nurse. The human body varies in its weight and while it is reasonable for them to expect a trend over time it really isn't as simple as 500g like clockwork every week and they should not be making you feel it is abnormal if it is not.

Over several weeks if there is no increase it's reasonable to look at if something else is going on but in two weeks it really isn't. If it was simply calories in/calories out and fat loss you'd need a 1000 cal daily deficit to lose 1.4kg in a week, and it is incredibly unlikely you would not have noticed that if your DC eats in front of you. It could be absolutely anything, physically or behaviourally, in only 2 weeks.

My DC struggled to put on any weight beyond what was required to stay out of intensive treatment and also had these seemingly massive swings each week. They should also be taking measurements like arm circumference which are a more objective measure of progress.

It is so hard. I stopped looking at the number. The difference between real life and and a smooth linear increase is too great