Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

@SendTheNextOneIn
It’s lovely to hear your dd is getting on so well. It sounds as if she had a turbulent time with schooling. However, she’s aware advocating for herself, which is wonderful. I hope she manages to catch up, especially science, which is possibly delivered over the 3 years from year 9 - you would have to check with the school.

@littlebabycheeses99
The nastiness is so so normal for some, including my dd. Please try to see that this is the ED, not your ds. He’s inside there and loves you very much.

Presuming all is ok with your dd, I think it’s good she is moving out. She will be able to focus on her stuff and you can focus on your ds and check in with her once or twice a week or whenever needed, without feeling guilty or overwhelmed that you’re not meeting her needs.

I’ve just had a session with the coach and feel so much better. We have a plan for the next few days and I will probably have another session on Saturday, because this is crisis mode here right now. She gives parenting coaching support, which has helped so much with my mental help. And a way to communicate with our loved ones. I’m not trying to force this on you or anything. Just reminding you if it’s helpful… and I appreciate none of this stuff is cheap.

Thank you for spreading some hope @SendTheNextOneIn, it really helps! I'm so glad your DD is doing well, I hope this school move works out for her.

@littlebabycheeses99 it is so so hard at the beginning. You don't really have a plan of action yet. I hope you hear from the MDT review very soon and that they'll be offering some much needed support. I do recommend Beat and their courses if you do manage to come up for air and feel able to look at what they offer.

Big hugs to you @Mummyoflittledragon too. You are trying so so hard for your DD, I wish she could see how lucky she is to have you as her mum.

Hi thanks for the update it's so nice to hear of successes. Your story sounds very similar to ours.
We were on the verge on T4 admission not long ago but luckily appear to have turned a corner these last few weeks so we have avoided it. I'm still aware it's a possibility. It's good to hear it helped. Were you able to visit much?

Have you had her assessed for AuDHD before? It has also been mentioned to us as it may help tailor the ED support for her. I really hope it helps her to learn more about herself.

@CuppaTandBicky we were able to visit two or three times a week, yes. We were about half an hour away from the unit (although with traffic it could take an hour to get there sometimes). We have a younger DD as well and we didn’t want to drag her over to the unit three times a week so we soon came up with a schedule of myself and husband going over for a couple of hours individually on two week day evenings, the other stayed at home with our younger one, and then all three of us went for a family visit at the weekend. After a few weeks DD1 was allowed local leave, and then home leave, so we kept up the weekday evening visits but she’d come home at the weekend.

We’ve not explored any neurodivergent diagnosis before, no. She’s always seemed neurotypical, just with some quirks that we always put down to her being a quiet introverted person. As she’s hit the teen years, it’s become a bit more evident that perhaps it’s more than just being an introvert, and that there could be more to it.

That's good she got a place not too far away.
I was very nervous about tier 4 admission and wanted to avoid it at all costs at first but I now think maybe "blasting" this illness with everything available whilst they're younger may be a good thing. We have had two admissions to general ward but left both times having been "re-fed" in a safe way but not much else in terms of recovery.

Reading some of the posts on here with older teens it sounds very difficult. I really feel for you all. Especially when they're an adult in the eyes of the law but still need so much guidance and support.

I really hope school goes well next week.

Thanks @Weightlossworried. I think all of our dcs are so lucky to have dedicated parents and wish they could all see that.

@CuppaTandBicky Yes, definitely blast it when they’re younger. It was so much easier when dd was year 11 in comparison to now.

Gosh sounds like everyone has been super busy posting - I’ve been off the thread for a few days while we were on mini holiday. Will just do a quick update and a couple of comments - otherwise I’ll be here all night.

First day of the mini holiday DD freaked out about what she ate the day before and ate nothing. She was also weighed the day before and had gained 4kg in the two weeks since being hospitalised - I reckon some of it is just the weight of having some food in her body. I thought that was it and she would stop eating again but fortunately she started eating the next day. Overall she ate quite a lot, although every time she eats a bit more she still get incredibly guilty, says how fat she is and paces incessantly. She is gets very hungry all the time - is that normal ?
Tonorrow we have our next review - DD no longer wants to do the observed eating clinic, let’s see what they say. I think maybe if she’s eating on at home it’s ok - I certainly don’t live going there all the time trying to juggle my job - it’s a 40 min journey each way.

@chillikat - sorry to hear about your DD. Mine was like yours - completely refused to eat and was losing weight very rapidly. Getting hospitalised really helped - having observed meals there 3 times a day for her back to eating - although I would t say we are out of the woods yet.
@Weightlossworried sorry to hear your psychiatrist was not helpful. We’ve been told dd is not allowed therapy yet because it wouldn’t be helpful. However they say she can have it once she’s gained weight and is on the path to recovery. At the moment we just have FT-AN but they will provide CBT later

That sounds like things are moving in the right direction @10YellowTulips ? The fact that she was able to come back relatively quickly from the distress over the weight restoration and was able to eat for the rest of the holiday.

I have no personal experience but I have read extreme hunger is very normal as they recover.

It'd be good if they can listen to your DD on the clinic seen as she's doing so well. Fingers crossed for you both!

A quick update... she was sent from the EDteam to hospital for assessment and that's where she's been since. Its going OK though. Complying with what she needs to eat. Fingers crossed we've got it early enough.

Hi @chillikat it’s good to hear from you. I’m glad you are getting the help you need. Are you on a general children’s ward? Take it one day at a time, hospital was definitely what we needed and like you say, having early intervention really helps. Keep us updated when you can. It is worth staying in hospital longer than you many think as sometimes they don’t do what you think when they get home xx

How is everyone? It’s a funny time of year isn’t it. We return to school tomorrow and there seems to be a real shift in energy etc. The weather has changed and everything feels different.

How are you @Mummyoflittledragon? Not just how is DD but how are you? I am so glad you have the coach. With DD I think you’re doing eveything right, you have all along and you can only do so much. As for the idiot that mentioned food, well I won’t say what I think he is, but I think we probably both have the same word in mind.

@Weightlossworried I am still not over what the psychiatrist said! As others have said, why is there such a difference in treatment and why are some ‘professionals’ so useless. When does DD start college? I hope she is excited and you definitely are doing the right thing sending her.

@littlebabycheeses99 I remember how hard it can be to type etc when things are so hard. It can help to tell us how you’re doing. No pressure ever, but we are here and there is no need to ask about anyone else, it’s ok just to tell us how you’re doing.

@10YellowTulips I really hope today goes well. We did home visits for food, but I can imagine the clinic is difficult, so perhaps ask if they can occasionally call
in at home. We did spend a lot of time in clinic and I know how draining it can be! Remember to ask for what you think is right, sometimes we don’t ask and then we don’t get what we need.

@CuppaTandBicky How are things going with you? I hope you’re ok and things are progressing well.

@Raspberrysins I hope the return to school went well and you’re enjoying being back.

I remember when we chose not to go to school so we could see all meals etc. To anyone not returning atm or ever, be kind to yourself and remember things do get better. Sometimes having the time out of even being in hospital etc can really help. Some Of the best outcomes on here have come from hospital and clinic admissions. Sending hugs to everyone xx

Thank you @Pearl97 I am struggling with keeping up with what everyone is posting when my head is so scrambled.

We had the outcome of the MDT meeting yesterday, they spoke to my DH after he had to chase multiple times. They've basically said DS is not at an acute stage - even though we have outlined the MEED guidelines, and reiterated that he is eating under 500 calories a day and is purging multiple times a day too.

Because he has explicitly told CAMHS not to involve us they really won't tell us much or guide us at all. They've advised a 'hands off' approach with us - and said to basically leave him to it.

Bear in mind that he's autistic, can't cook - and the only things he is making for himself are small packets of super noodles.

He is also responsible for going to medical appointments etc (which he has previously ignored). Apparently he needs an ECG and they've asked him to attend a clinic to do that - I will be surprised if that happens.

So it seems like we're just going to have to wait until he needs hospital treatment before anything gets done.

I was so so upset yesterday - but now I'm angry at the system and the way these kids are just left to flounder. He's 17 with serious mental health issues as well as anorexia but apparently he's been deemed to have 'capacity' so we have no say whatsoever it would seem.

@littlebabycheeses99 I am angry for you. It’s such a broken system. I can’t believe how ridiculous it must all seem to type that out! For now I would try and look after yourself and make sure document everything so you can complain in the future. Also, please don’t worry at all about reading anyone else’s updates or replying. Just concentrate on you and your family and know we are here for you xx

I've been thinking of you @chillikat so thanks for updating. I'm so relieved you're getting the help you need. I've read lots of positive posts from people on here about how hospital was a good kick start to recovery for their kids.

@littlebabycheeses99 I was wondering if you'd heard about the MDT review. I'm also very angry on your behalf. I can't believe they're going to allow him to continue such a low intake unchecked. I also can't believe they're not offering you support - I understand they can't share information without his consent but they can still support you. How can it be right to advise you to leave him to it? I'm so sorry.

@Pearl97 I'm feeling a lot more positive today. Dd's first day seemed to have gone well. As ever she seems to have eaten better with her peers too. I managed a trip to the gym which always makes me feel mentally stronger when I've been feeling a bit weak and pathetic!

I hope nobody minds me posting another update. I’ve had so much kindness and useful advice on here already and I really appreciate it. I’m sorry I have no useful advice to offer anybody else at the moment — we are very much in the trenches and I feel like I’m just trying to get through each meal and each day.
Since I last posted, things really haven’t improved. She still refuses to come downstairs for breakfast, snacks or lunch at all. Dinner is the only meal she will come down for, but she never eats all of it anymore and there are lots of eating-disorder behaviours around it.
We have had food thrown, food deliberately made inedible so she then “can’t” eat it, complaints that the food tastes wrong or that I’ve cooked it badly, arguments about what has been served, and lots of blame directed at me or the meal itself. Even when she does eat some dinner, it is generally only part of what has been served.
Meal support are now coming to the house every day, with the crisis team covering at the weekend. She still refuses to come downstairs for them and instead stays in bed hiding under her duvet. They will go into her room, sit on the bed and try to talk to her, but she simply ignores them or pretends to be asleep.
Her physical observations are also becoming more concerning. Yesterday her blood pressure dropped from 109 lying down to 90 standing and her pulse went from 80 to 107. CAMHS have now submitted the paperwork for enhanced care and the ECRT have agreed to come to the house to assess her. Hospital admission is now being talked about very seriously.
What I am really struggling with is that she just does not seem to believe any of it is actually going to happen. Everybody is telling her very clearly that if she cannot eat and things continue like this, she is likely to need hospital. She just laughs or brushes it off and is completely adamant that she will not end up there.
I find that incredibly difficult because I think if admission does happen she is going to be genuinely shocked and devastated. I don’t know whether I should keep talking about it and trying to make the reality sink in, or whether there is absolutely no point because she simply cannot hear it at the moment.
There is another thing I would really appreciate advice on from anybody who has been here.
I need to pop out tomorrow to pay a cheque in and DD wants to come with me and go into a couple of shops. She has suddenly said that she will eat lunch tomorrow so that she can come.
And I just cannot get my head around it.
Today she cannot eat lunch despite meal support being here and everybody telling her where this is heading — but apparently tomorrow she might be able to eat because she wants to go shopping.
Has anybody else experienced this? Did you use things your DC wanted to do as motivation to eat, or does that risk turning food into something they only have to do in return for something else?
I feel as though every time I think I am beginning to understand this illness, something happens that makes absolutely no sense to me again.
If anybody has been at this point — home treatment really struggling, enhanced/inpatient assessment looming and a child who absolutely does not believe they are going to be admitted — I would be incredibly grateful to hear what happened and how you handled it.
Thank you again to everyone who has replied before. I really do appreciate it more than I can say.

Hi @Holly221288 you are very welcome here an lad we are always happy to reply to your updates. Please always ask here for advice. In real life most of us don’t know anyone that understands.

Firstly, I would just say this sounds so tough. I temper the feeling of doom before they arrive for meal support. It sounds like you have the right people doing the right things.

This is a really difficult time as when my daughter was poorly I really thought she would just eat when the going got tough, if you know what I mean. Like when the teachers say they’re a joy at school, but they’ve caused you chairs all day! The team will be used to people not engaging at all.

it does sound like hospital would help you all at this stage. I know how daunting the word hospital seems, but they won’t allow her obs to stay like this. I would say in the next few days you will be asked to go to A and E for them to assess her and probably admit her for refeeding.

They will take blood daily for around 14 days abs monitor her. It is the best thing that happened to us. I felt better as soon as we arrived as the pressure was off my shoulders. They will feed via tube if she refuses to eat their plan, but this will be discussed etc and isn’t something to fear either. The lack of nutrition makes them do and say things they don’t always mean.

Have they said what the next steps will be and when? I don’t think any of you can go on like this, it must be so hard for you each day xx

@Pearl97 thank you so much for replying. They are very keen to avoid her going to a paediatric ward and instead are hoping to do a controlled admission to an eating disorder unit. They have submitted the Form 1 today so someone should be coming to assess early next week

I would say getting specialist help @Holly221288 in a unit is a good idea. In paediatric you have to be very involved as parents. I think a unit would be able to really help her. I know it’s terrifying and you would rather none of this be happening, but in the circumstances I would say this is the best things that can happen.

You really are in the trenches @Holly221288 so don't apologise.

I don't have a lot of advice to give you but logic definitely leaves the building when an ED has moved in. My DD has said she likes being threatened with hospital, it makes her feel validated. She is completely unable to process the logical side to it where she would actually find it very difficult. In a slightly more logical conversation she has also said that she feels like being admitted would take away the choice and force recovery which she does want on some level.

Our DD has never responded well to us trying to use eating as motivation, she gets very upset and sees it as us punishing her by denying her nice things because she's ill. I think the pressure is too much.

However, on a practical level, we are very clear that in order to be physically safe she needs to eat a certain amount in order to do things. So, she has to have breakfast to go to college for example.

It does sound like you have a very proactive and supportive team looking after your DD which is good. We're here too whenever you need to talk.

@Holly221288 my dc would often say they would do things if they didn't need to be done today. They'd agree to eat so they could go to a party say. But then that became i'll eat at the party. And then it became i've already eaten. Except of course they hadn't. Same with going to appts. They really want to go, of course, but not today.

I don't think its manipulative, i think two things can be true at once and as well as wanting to do some normal things they want to protect the ED.

We can all drive ourselves crazy trying to hope and care and understand. I hope your DD gets the medical care she deserves very soon

Hi, I've been exactly where you are very recently.

My daughter also didn't believe she would ever go to hospital and was really upset when she was told she had to go.
You might find she is on a children's ward whilst waiting for an ED space as they're quite sparse.

My daughter also never believed she was underweight, or that she would be tube fed, or would have to do any of the things that happened. As each thing that I said would happen actually happened, it was sad but helpful in a weird way.

Hospital is the best thing, honestly. A new environment with staff who are trained to deal with this is definitely what is needed, as daunting as it is. Also medication really really helps!

Also I use doing things like going shopping as a "reward" it's actually got us through some really hard situations where I thought she was never going to eat. Especially when they aren't allowed to do much and the boredom sets in. Always make sure she has the food before you go anywhere though and I always find going literally the minute she finishes eating is useful because then she won't have time to dwell on the eating part.

@10YellowTulips
I’m glad to see things are looking up. Dd experienced extreme hunger shortly after she went onto 3 meals, 3 snacks. The body can go into hyper metabolism. This is where food is burned incredibly quickly and needs a lot to sustain weight, let alone gain weight. A lot of repair work needs to happen first. I totally understand the anxiety around not wanting to be monitored. My dd struggles to eat with us.

@chillikat
I hope things go well for your dd. It sounds as if they are taking this seriously, which is really good to know.

@littlebabycheeses99
I am so cross for you and for your ds. This must be so difficult for you.

How much contact do you have with the psychologist and psychiatrist? Much as there is a certain level of confidentiality for your ds, they are being paid by you and you presumably signed the contract.

I know CAMHS are presumably thinking your ds has capacity. Do the psychiatrist and psychologist concur? Because intelligent, motivated kids can very easily pull the wool over the eyes of CAMHS in my experience. My dd did it with both the CAMHS psychiatrist and clinical psychologist together when she was 16. The psychiatrist declared in front of dd, in the process, doing untold damage, that she doesn’t have an ED.

Your ds has likely had the benefit of quite specialised therapies and methodologies by the sound of it. He may be using his knowledge to pull the wool over everyone’s eyes. Just a thought. It should be less easy for the psychiatrist and psychologist, because it sounds as if he has an ongoing relationship with them, but not unheard of.

Are they aware of his level of intake and purging and are they specialised enough to be able to deal with it? Because ED is a highly specialised discipline and they need to have a track record of working within it to be effective. Are they aware that he is red on MEED and that he has been told to get a second ECG within a short space of time?

And are you able to find out what they are doing with your ds, maybe the types of therapies and the sorts of areas they are discussing? I would want to find out the sorts of things they are doing for him. And asking them about their code and ethics and at what point will they break confidentiality for your ds’s wellbeing.

@Holly221288
It really isn’t uncommon to be blissfully unaware. It’s called anasognosia. This is the term for someone, who is mentally ill, but totally unaware of the fact. My dd suffered from this for at least 6 months. She was totally bewildered as to what all the fuss was about. At that point, her brain was basically telling her that food was poison, so of course logically when I said she was eating less than a baby, it was fine, that was different.

It sounds as if your dd is probably at this sort of stage or getting there. When we tried to get dd to eat, we had violence, nastiness, screaming, kicking, plate throwing, trying to escape etc. It’s the brain defending itself.

From everything people say, going to a unit was the best thing for their dc. We don’t have experience and did not take dd to A&E due to extreme fear of hospitals and a medical condition. But for your dd, absolutely take whatever is on offer. It sounds as if it will be so much easier for you and your dd if you do than trying at home.

And I concur with Cuppa. Using incentives, things that our dc want to do more than restrict, is a large part of getting them to eat. So it’s great you’ve already found something.

@CuppaTandBicky
It is so nice to see you so enthusiastic. I hope all is going well.

@Pearl97
Thanks for checking up. I’ve had a few victories. Dd is allowing us to drop her off next Friday rather than Monday with her friend. That was a work of art. I’d been waiting for dd to say about it again, which the coach told me to do. And it went from full on spiteful (said to hurt me when trying to get dd to breakfast), to agreement within hours, using pretty much every technique the coach taught me, finished off with the autism centred argument she suggested. It’s so complicated…

Dd is also letting me take her to buy any stuff that we don’t have. Also a victory, was to be with another friend. I’ve also steamrollered telling the university about all her diagnoses, including autism as she’s not accepted that one. I had no choice, needing to align for DSA and the adjustments are on the ASD report. There is an event for disabled students tomorrow at the university and I’m going to be very frank with them about her complex needs. Dd is totally oblivious, I’m hoping she will gain a little insight.

I’ve joined the fledgling thread for parents of teens off to university. It’s heartbreaking. They’re chatting about the excitement of it all, sending their dc off to the big, wide world. I feel we have nothing in common and desperately wish to be able to do the same. Since dd came back from holiday Friday night, she completely dropped breakfast (and morning snack, which she amalgamated with breakfast months ago) around the tummy issues. Her stomach has clearly shrunk. Saturday, Sunday, Monday, she didn’t eat until gone 2pm. I managed to get her to eat a tiny amalgamated breakfast/morning snack Tuesday onwards, but not until just after 12. Today I managed 11.45.

The coach and I discussed the possibility yesterday of giving dd the option of agreeing to therapy or not going if she can’t find a solution to eating correctly. So we have a bit of a crisis going on right now. I have now booked extra sessions with the coach. Dh tomorrow and me on Saturday to try to break this. And what dd really needs to know is that we really really want her to go. I get she isn’t exactly ready. But I don’t want to clip her wings and I think it would do her the power of good. She will only be an hour away door to door. And we all need a bit of space.

Thanks, we are doing ok. We are out of the critical, awful, panic stage and able to do a few normal things again.

I haven't dare say that before because I have thought that before and I know things can turn so easily. But must also be optimistic! This and past threads on here were a lifesaver, just to feel less alone and also realise how serious it is. Once under a team they do hammer home how serious it is but having been on here that didn't come as a shock. I think I would have coped a lot worse if I hadn't read of others with similar experiences.

I really hope it goes ok with your daughter at uni. I can't even imagine what that must feel like and I can't imagine mine ever being independent enough to even consider it (I pretty much do everything for her because she's so anxious) so if she ever does I think I'll feel just like you.

She knows you're there for her and she's lucky to have you.

@chillikat I’m glad to hear your daughter has been admitted - sounds like she needed it. Do you know how long you’ll be there? Is it general paeds? I hope it turns out to be a good thing like it was for us. It’s changed my daughter from eating almost nothing to eating again - she no longer looks gaunt with massive bags under her eyes.

@littlebabycheeses99 Im so angry and frustrated for you. It must be awful. It just seems wrong they are ignoring him in this state and not including you when he isn’t even 18 yet.

@Holly221288 sorry things are so hard. Hopefully the admission will help. It sounds like it might be next week, is that right? My daughter also seemed in denial about hospital or just acted like she didn’t hear me when it was spoken about. It was only the last few days before it became a reality she started freaking out and acknowledging that’s where she was headed.

We had our review appointment yesterday - she asked to not do outpatient meal support and they agreed as they really want the patient to be involved. And she’s still eating. They’ve also decided it’s best to not weigh her for now. So she will just have FT-AN and we will see how we go.
May the moment she is super anxious about school - she doesn’t really have friends there, the ones she had were year above and they left. She’s also anxious about it being year 11 and the amount of school she missed last year. I’m worried it will have a negative impact on her eating - she already ate less yesterday. I just wish I could make school easier for her. She has been referred to have a review for additional support - possibly a special setting.

@Mummyoflittledragon I really hope there's a bit of a turning point with your DD and that she makes the decision to eat properly and therefore be able to enjoy her time at Uni as much as she can.

Does she struggle with you having 'control' at home? My DS seems to eat much better outside of the home - at a friends house or restaurant. He will barely eat at home and we definitely can't be around if he does.

DS now has an 'extended assessment' with CAMHS next week. Not sure what that is going to entail, but thinking it's a good thing if they're going to be a bit more thorough. I think DSs presentation is a bit complex and I suspect he is also making up some plausible lies (he's very clever and went to drama classes for years). He has not been officially diagnosed with autism but I think everyone around him suspects it - but he also has quite significant depression and intrusive thoughts.

Am hoping that CAMHS might share some more information with us next week but won't hold my breath!