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

[Mummyoflittledragon]

New thread. The old one is full…

@Raspberrysins is it the eating disorder clinic who take the blood? Did they say what they would do about the liver etc?

It is great that she eats with you and is sticking to the plan.

I know from experience and from people on here that exercising in their rooms etc is a big thing. I didn’t realise until people on here mentioned it. I am not saying your daughter is, but they can repeat the blood test soon and you can then see if they have changed. Did she previously like exercising?

I hope the holiday packing so stress free. I hate packing when it’s hot and everyone is wearing their summer clothes … I can’t wash stuff in time, stop wearing it!

I am so sorry to return to the thread and to read so much sadness and struggles.

@Raspberrysins unfortunately it is relentless. You have made progress, it just doesn”t feel that way. The progress is that there has been no more weight loss. And I am thinking that you and your dd have learned a lot. She is again committing to eating the increased meal plan. That is so positive and shows she does want to get better, even if she doesn’t know how to do it or what recovery looks like.

As for the throwing of food, she knows you think there may have been some kind of incident. In a quiet moment, if you want to, you could tackle this and say you were concerned at the time that she may have thrown some food away that day when you talked about it. That you really love her and want her to feel she can be honest about anything with you. Because you can see how committed she is and how hard she’s trying. And if she will take a direct compliment, that you’re really proud her.

If you do, it is just some soft support and hopefully she’s at the point to be able to hear it that way. And she may tell you she did. Or that she didn’t. And you can handle this either way. If she tells you she did, you can just thank her and tell her if she feels this way again to let you know and you’re there for her.

@CuppaTandBicky
As Girlie said, the starved brain is not rational and becomes more rigid. My dd is likewise ND and has a fair amount of anxiety based demand avoidance. So I get what you’re dealing with. As your dd begins to respond to the eating / feeding, you will start to see miniscule glimmers of hope. They will be tiny, but you will see them. And receiving nutrition means your dd will start to return to herself. The starvation based rigidity will remain, but lessen slightly as she progresses. This treatment does work. I know it doesn’t feel like it at the start.

You can do this. Just trust the process right now. Your dd is where she needs to be at the moment. And as she receives more nutrition and her brain starts to respond a little, you will start to be able to look back and see the progression.

My dd is 2 years into treatment (that’s 90% me btw when I say treatment as she won’t see anyone) and almost 3 years from the beginning of all this. And she has made massive progress, with lots of regression and relapses along the way. She still isn’t ready to take control of her recovery. But it’s coming. I can feel it, slowly, and I am really hoping this time, she won’t run away from it again, like she did last September.

@Weightlossworried
I’m really crossing My fingers for you that your plan will work. On the one hand, CAMHS are so heavy handed and offering very little support on the other. I get it’s hugely frustrating. We didn’t get anywhere near as far with CAMHS as you. The irony I find is that for somewhere set up to treat EDs, which by nature are massively inflexible, CAMHS is likewise showing a massive amount of rigidity. I don’t see where and how this can be useful to treat the patients, who don’t fit neatly into the boxes they seem to categorise people. And there seems to be very little appetite to address that or work with those, like my dd who we now know is ND and needing a ton of adjustments.

Just trust that you know what you’re doing is right for your dd and family right now. If it doesn’t work out the way you want, you have a lot of support around you. You have the therapist and CAMHS, and you have us. And remember that this is a process. There will be a lot of bumps along the way. And that it is scary. And you have this.

As for us, we are away, near dh’s dad. It’s going pretty well from a holiday perspective. And she’s eating ok, needing nudging for a tiny afternoon snack and staunchly eating breakfast and morning snack together, meaning if she eats breakfast early, she’s basically restricting at lunchtime as her lunch isn’t enough by that stage, whereas if she eats it at 11, there is an argument there she genuinely isn’t hungry. But the ‘I’m not eating to plan’ corner remains turned for now.

I’ve worked out a great programme for the week, so that dd is happy. And dh took her to Center Parcs for the day yesterday (you can do that in France), which made her happy. And went to Paris on Tuesday.

I now need to book a hotel for a night Friday to Saturday as I want to take dd to Germany - dh and I lived there for 4 years before dd was born. Friday night should hopefully be vibing. She’s down to do French and German, but wobbling, and saying it isn’t the course she wants to… but she is refusing to go to the university that offers what she wants. We need to address what she wants to do and maybe change courses (through clearing), even if is is at the university she’s down for. So this is an opportunity for her to have a think.

Dd is no longer complaining about being on holiday with us when before she left, she was telling us and I imagine her friends, she was dreading it. Dd used to love riding, but now doesn’t want to. I think it’s OCD based - the muck, dust and dirt, especially that getting in her hair. She I are off to a chateau today to see a horse show. And as a bonus, we have a horse and a Shetland right next to our holiday house. The owner said she can groom and feed them titbits, so I hope she will do the grooming. Then there’s just Sunday. And we are lunching with dh’s family and packing up. Back home Monday.

@Mummyoflittledragon it's lovely to hear how positive you are sounding about the time spent with your DD this holiday. Obviously there's still concerns and challenges but the activities you have planned sound perfect

@Weightlossworried so sorry to hear camhs are being so difficult. A meeting with all parties does sound sensible, hope you make some progress and find a way to work together

@Raspberrysins @CuppaTandBicky sorry things are tough.

We're back from hols and DD is currently with her therapist. They agreed she'd be weighed today as shes had a few recent losses and was anxious about being away, so today we find out where we're at and make a plan. She had one big wobble, and one incident of throwing away food whilst we were away, but otherwise coped well. And today despite only waking up 3 hours before her appointment she was determined to have her breakfast, snack and part of her lunch. So there's glimmers, again, but I'm preparing myself for some hard work ahead

On that note, those of you that have had your own therapy/counselling, how did you go about sourcing that? I feel I need to stock up my own resources ready for the next phase. We were also away with extended family and its shown how I'm a classic sandwich generation candidate with parents needing more support whilst I have teens. I'm going to investigate hrt too, but belt and braces feels wise right now!

My DD is back on a refeeding schedule. Doctor wanted to put her on the 6 week plan at the hospital but it would mean being off sick from work and she’d no doubt lose her job. The doctor seemed incredulous that this could happen 🙄. Dd has agreed to try and put 6 kgs on but the doctor telling her she was very sick has sent her anxiety spiralling. She seemed so positive a few weeks ago. She is relying heavily on my support, over the phone, which I am finding utterly draining.

She is eating a lot more and has been gripped by massive hunger a lot of the time which Google tells us is the body rebalancing itself. Her brain is opposing everything.

It’s so tough.

Sympathy to everyone coping with this terrible disease.

I'm glad to read a positive update from you @Raspberrysins, I hope today is going a bit better too. Bless your daughter and her commitment to locking in despite it being tough.

I'm so glad the holiday's going well @Mummyoflittledragon

I hope it's your turn for things to turn a corner soon @CuppaTandBicky, that all sounds incredibly tough.

Fingers crossed the way in goes ok today @LurkyLurkyLou

Sympathy to you too @Desdemonadryeyes , it must be a whole set of different challenges supporting an adult child through this.

Our appointment today was a bit of a shit show really. DD too distressed to eat or drink beforehand - or possibly too concerned by the scale. This meant her obs were shit and they want us back on Monday. She'd lost 200g in 3 weeks. Although it doesn't feel like a loss really when it's so small and probably a result of her not eating or drinking today.

This means she is now 43.1kg and 78%wfh. We are up 2kg since march. Not ideal but not awful in my eyes but not in CAMHs eyes unfortunately. Crucially when she restored 1kg last month she was destroyed by being 43kg but she didn't seem concerned by seeing that on the scale this time. She came back and ate her lunch.

Feels like a small win to me but the nurse was very unhappy. Talking about hospital admission and she'd have to be in an adult ward. I don't know if it'll come to that but any advice on what that would look like would be gratefully received. Would we have to provide meal support on an adult ward? If so I don't understand the point really.

Nurse also referred to us needing to go 'back on meal plan'. I pointed out that we've never been off the meal plan and she backtracked but I worry that reveals what they think we're doing (or not doing)

@Pearl97 yes bloods are taken by the CAMHS team, the Dr phoned us the next day to talk to her and wanted to ask lots of questions as they were worried about liver function. She basically told DD that she really has to push now with the meal plan, as it's affecting her vital organs. I think this approach works for her as she was definitely taken aback by the phone call. We are now on 3000 cal meal plan, which the dietician said should definitlye mean weight will be restored. it's what we've been trying to follow already, but when we told him her meal diary, he said it was more like 2500. She's been scrimping a bit on the snacks, and portion sizes. Honestly the amount she has to eat is quite a lot. Today she is on day 2 of sticking to it 'properly' and she's feeling so bloated and uncomfortable.

I took her shopping for some holiday clothes which was quite stressful as she basically hates what she looks like at the moment. She seems to actually want to put on weight now because she wants a 'proper' bottom and boobs. None of the clothes look the way she wants them to..

I am hoping that the meal plan will start to become a normal routine, and that one day it will just feel a bit less overwhelming and a bit less of a battle every day. I don't know how long that will take though but it feels relentless..

Sometimes I think a hospital admission might have actually been good for her, but it's hard to know isn't it.. she has said that there is actually an element of not feeling 'sick enough' because she hasn't been admitted.. and therefore she's not really ill.. but luckily with this Drs phone call she knows that's not true. Something that helped her was being told she always has a choice - she has the choice to go back to anorexia, or the choice for recovery. There is no middle ground - this is quite good for her black and white thinking

@Weightlossworried Your meeting today sounded tough, but also not terrible. It's interesting how they can respond to these meetings in different ways - e.g. your DD won't eat, but mine is the opposite and eats much better the day before the appointment as she doesn't want to 'get into trouble'.. however it's usually too late by then :( Don't forget that your DD has made progress overall, and should be proud of that too. xx

@Raspberrysins I totally get what you mean about hospital. I suppose if you knew it would work it would have been a good idea, the issue is, if it hadn’t you would have the trauma of the hospital etc. It is so difficult to know. It is good the GP is speaking to you though and your daughter has realised how serious this is. I reallt hope the 3000 calories starts weight gain quickly.

How are you doing? I know I ate the same as my daughter and my goodness did I see the weight gain. I really struggled with the amount of food and the constant tought of food. I had always eaten what I wanted when I wanted and found the structure so difficult!

@Weightlossworried I have restrained from swearing up until now, but I feel like a for fucks sake is needed here. You must feel like saying can you either put her in hospital or stop talking about it. It’s like a teacher at school that just threatens detention, keep saying it makes everyone think it’s not going to happen.

Why would it be an adult ward and are they saying an eating disorder clinic or a hospital ward? I don’t know why she would be admitted to a paediatric ward. Also, what grounds are they admitting her on? Her lack of weight gain? Did they do her obs again and like @Raspberrysins are they doing bloods? I really think they need to be more helpful in saying what you need to do and what they aren’t happy with. Do you see a GP or just the nurse? Could you ask to be weighed by a GP? Are you at an ED clinic or just Camhs? I really am so sorry this is all happening to you. I wish they were nicer and more helpful to you xx

I feel absolutely paralyzed by fear in the appointments when they do this stuff so I can't challenge it.

They're talking about a ward in our local hospital,..she said below the age of 16 that would be the paediatric ward but over 16 it would be an adult ward. The grounds of admitting her are that she's not making enough progress and won't engage with them. She said the would refeed her in hospital. I do feel it may

They did her obs and her pulse and BP leapt up on standing as it often does - but she hadn't drunk anything all day. She had bloods done 2 weeks ago but when I asked her for results she said there were 'concerning markers' but didn't say what they are. And then she terrified me with hospital talk so I was too frozen with fear to ask.

We are with an ed team within CAMHs. We see a nurse each week. We asked about obs and weight being done at a gp surgery but apparently they can't allow a GP to 'take responsibility'.

I'm going to make some notes ahead of Monday of things I want to ask. I get so frozen in the appointment. I kept thinking in the car on the way back that I just want to run away with my DD!

@Weightlossworried I can’t stop thinking about you. I absolutely know what you mean by the fear and I’ve definitely thought about just keeping driving!

Could you e mail them to ask for the results? I asked my GP to help me as I was so stressed, but he seemed as scared of them as I was!

Like @Raspberrysins if your daughter knew what was wrong with the bloods, it might help her to see why they are pushing the meal plan.

Or, could you call them with a list of questions? I just wonder how we can get the answers you need not in the actual meeting. Who are you meeting on Monday? Xx

On Monday we meet with the male nurse we used to see, as the head nurse who we saw yesterday isn't available. He's not at all approachable. DH plans to ring or email today and ask some questions.

I've decided to take a notebook to meetings from now on where I can write down questions and stuff they say to help me stay on track. I'm going to write down all that we're offering her and what she actually eats too so I can show them as I do think they've lost trust in us.

I'm not convinced that DD knowing the blood test results will help - she was really happy after the appointment yesterday. The ed side of her loves being told how she's really ill and might go to hospital. I think issues with the blood test results might go down the same way. For example, she had some spotting a couple of months back and thought her period might be returning. She was really upset. If her blood test results show low/no oestrogen she'll be happy I reckon.

Thank you @Pearl97 for your support. I can't express how much I need it right now.

@Weightlossworried my heart hurts for you, I remember that feeling of powerlessness and fear to your core as well.

Please be kind to yourself, caring for a child with anorexia has to be up there in the top worse things a parent can go through.

What @Girliefriendlikespuppies said, unless you’ve been there you can never understand the feeling of doom!

A notepad is a really good idea. Even if you just write down this man is a tw@t it might help you! Jokes aside though, if you list questions before you go and then literally just read them out.

How likely do you think hospital is, and how helpful would it be for your daughter. Also, do you feel it could help you? You are doing so well, but it is a very lonely road xx

Thanks both.

I feel conflicted about hospital. There's no doubt we're not managing to get the full meal plan in her. And I know the longer this goes on the worse the prognosis is for dd.

If hospital had ever been presented as a source of help and support I'd probably be feeling upset but ok with it. Unfortunately every conversation has involved them telling us how hard hospital would be, it's talked about like a punishment really. This means, a) it's hard to work out if they are just trying to scare DD into eating more rather than actually considering it b) it's hard to be anything other than terrified by the prospect.

The nurse yesterday actually said about the adult ward that they don't really know what it would be like if she was there because they 'dont have a relationship' with the adult ward like they do with the paediatric ward. It's not reassuring to hear that as a parent. How am I supposed to have faith that this might be something helpful for DD when they say things like that? What if she eats less there than at home? I can't see them backtracking and letting her out.

I also worry with DD that the harder you push, the harder she pushes back. When they came to do meal support at home she refused to eat at all. What if hospital is like that? And what will that do to her mental health?

At home we're seeing her mental health improve and these little steps towards recovery. It's not enough but it is progress

Glad to hear that those doing holidays are having/have had a reasonably successful time, you deserve it! And hugs to everyone else that's struggling.

@Weightlossworried I am so sorry to hear that you're having such a difficult time with your daughter and the ED team. I absolutely hear you about the hospital as punishment thing, this was exactly the tone we had from our team too with hospital and subsequently with Ng tube feeding and sectioning, everything seemed like it was being held over her head as a threat, but they were very slow to actually implement anything. DD17 was threatened with the adult ward, but we got the inpatient ED unit admission before it got to that stage so I don't have experience of that one. I suspect they would want you to do meal support as I doubt they'd have the staffing to cover it.

Do you have any kind of advocacy services where you are? Our ED service has a patient advocate for the kids and a parents advocate, both of whom will accompany you to meetings if you want independent back up. Worth enquiring about for the review meeting perhaps?

My feeling is with ED services that they do not consider any other aspects of mental health to be important compared to the ED. DD is autistic with a serious trauma history and we have found that asking them to try and balance the treatment with the impact on her general mental health falls on totally deaf ears. Every change or concession she asks for to help her manage her PTSD or depression is "just the ED talking, and we don't negotiate with terrorists" (how I hate that phrase!). I can understand that it's a priority to treat the ED as it's immediately life threatening, but I fear in the longer term we will be returned a teenager who is weight restored but whose mental health is in shreds.

They will only be able to insist she stays in hospital if they section her, but it did seem to be relatively easy for them to do that in our experience. So sorry it's so difficult at the moment, but you're doing an amazing job.

I am so sorry @Weightlossworried. If they want to take your dd in, can you fight for peads? In my head I thought she was only 16. I’m presuming she’s therefore 17. When is she 18? I would also be concerned about what other sufferers will teach her, especially adults. Even just dd being around friends, who restrict has had quite an impact.

It is very unfair to make you feel this way. I presume it is a tactic you try to shake your dd into eating more. As for how to make her eat in hospital if she won’t, unfortunately as you know, forced NG feeding is a last resort. It must be brutal for sure.

As for letting her out once in, it seems adults do this way earlier than CAMHS and the threshold for admittance is pretty high.

Thanks @StressedANmum I'm busy looking into advocacy now, I hadn't thought of that but it might really help. And I agree re not looking at other mental health issues, the ed voice seems so much quieter when her mental health is good. So I worry about what will happen if she's in hospital.

@Mummyoflittledragon .she is 16 but apparently that means adult ward here. That's one thing I am hopeful of - the threshold will be high for admittance because they don't just have beds free I'm sure.

@Weightlossworried the whole system is broken. I would be surprised if your daughter fitted the criteria for admission as she isn’t refusing to eat. It would all be done on obs and blood tests.

There would be no need whatsoever to admit her to an adult ward in a hospital. They sound to sort of weirdly enjoy scaring you all. I hope you can show them that you won’t be pushed around like this. You all have the welfare of your daughter as a priority, but unless medically she needs hospital, she is definitely better off at home.

I am glad you are talking to us, as I remember how I felt like I was going mad, and I wanted to talk to my daughter about it all, but that definitely didn’t help! Xx

In terms of blood tests, previous ones have showed things like low vit d, no oestrogen, low phosphates. Concerning of course but I can't believe they would reach the threshold for hospital admission. I did check nice guidelines on admission for anorexia though and they can do it where parents are deemed unable to support recovery.

The nurse actually talked about ensure drinks and Ng feeds if she didn't complete the meal plan in hospital. I had assumed Ng feeds were a last resort for kids who are eating dangerously low amounts of calories. That's actually never been DD since we started treating her.

@Weightlossworried I think an advocate would be really helpful if you can get one, it's really hard to keep everything in your head and ask the right questions in those circumstances and they can help by taking notes as well.

My DD ate 500 calories a day or less for months. We were with outpatient ED team from November to May, she never put on any weight in that time and she was down to 73% WFH by the time she was admitted to the ED unit. In all that time she never met the threshold for admission to hospital on the basis of her physical observations. Obviously every child is different but I wouldn't assume they'd automatically be able to get her admitted.

It is really difficult when you end up in the position of not trusting the professionals you're working with though, it sometimes feels like they're making an already incredibly stressful situation worse rather than better. We've got to that stage with our consultant unfortunately, and it's awful.

@Weightlossworried Forgot to say, we were given ensure style drinks to use at home, have you been offered that (and would DD accept them)? They were prescribed by CAMHS for us.

@Mummyoflittledragon the influence of other ED patients was one of the things DD was really worried about going into inpatient care, but it hasn't turned out to be an issue, there's been no sharing of strategies or anything like that. The main issue is DD comparing what she looks like to new patients coming in, but she's managed that ok so far.

We're in the opposite position to some of you in that DD has started to put weight on scarily fast. She was sectioned 15 days ago, had 4 days on three quarter portions and has now had 11 days on full portions and she's put on 11 pounds. The consultant originally said up to 2kg a week was safe and if she put on more than that they'd reduce her intake. I dread to think what message DD would take from that - the anorexia would be delighted I'm sure!! However the consultant and the dietician are both on holiday now so I suspect she'll be kept on full portions regardless. She's really freaked out by the speed of the weight gain.

We haven't been offered those drinks,.no. I'm going to put that on the list of things to ask.

I do feel like I'm losing faith and I hate that. I want us to work as a team. I don't want to do this alone. We are seeing the family therapist on Wednesday and she's always been lovely. Maybe if we express our concerns she can intervene a bit on our behalf.

I'm sorry your daughter is struggling with weight gain -. This bloody illness gets us all ways doesn't it? Even good news is hard!

@Weightlossworried you're so right there!

DD has Ensure on the ward, we had Fortisip at home - if there's a choice DD says Ensure are nicer! She's not a coffee drinker but the other kids like the café latte flavour.

Best of luck.

@Weightlossworried In hospital we were given the firtisips if the full portion wasn’t eaten it is definitely worth asking but don’t be surprised if your daughter doesn’t want them!

I agree about working together. Hospital should be a last resort though as the bed space isn’t there and they can’t just admit people without a medical reason. The medical team would have to agree to admission and they often don’t. As other posters have said, lots can hardly eat but their obs are ok!

I would put hospital to the back of your mind and maybe write something down about wanting to work together. Could you be assigned a case worker who goes to all appointments with you? Someone who can ask questions etc for you as they know you? Xx

@Weightlossworried I also think it’s bullshit re admitting to an adult ward rather than a peads, I don’t know why they’re even saying that.

I mean ultimately you all want the same thing for your dd to follow the meal plan and recover but I agree the empty threats aren’t useful.

Does your dd take a multivitamin? Thats one of the things I had to do with dd although when she was v ill she wouldn’t even take a multivitamin tablet 🙄 I found them spat out all over the place.

It is tricky when they eat just enough to keep ticking over but not enough to get well. My dd would eat 1500 calories or so quite happily but wouldn’t gain weight on this, even at her worst restriction she ate around 1000 cals a day and lost weight on this.

It’s a misconception that anorexics don’t eat anything, they can eat quite a lot and still be really ill.