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…

@LurkyLurkyLou
That’s great your dd tried different fruit. I totally understand why you want to capitalise on that. My dd has watermelon from time to time and used to live on cucumber (with ketchup), so I know what you mean about water masquerading as food... It does take time for flexibility to return, so it’s great you’re more open to trying different things. You’ve both worked incredibly hard to get to where she is. And I do hope that the CAMHS session has gone well today. I don’t have much experience of CAMHS, but the therapist sounds great and hopefully you managed to have a chat with her about things.

@Girliefriendlikespuppies
I hope you’ve convinced your dd that she should come by train. Idk how things are between you. But with my dd, I am now able to point out she has chosen to go miles away from home, rather like this weekend when she insisted on going up north. She told me she had a very uncomfortable 3 hour journey home feeling absolutely lousy on Sunday. Had she been too ill, I would have got her somehow. But she wasn’t and I think things like this build resilience.

So it sounds like it was fine to collect your dd when she was unwell, but it kind of set up an expectation. If she’s anything like my dd, continuing to do so will create dependence and entitlement, which have both been a big issue with my dd. And yes, I agree my dd is starting to grow up, which is great to see. She has come such a long way. At her worst at just turned 16, I was talking to her like she was year 5 or 6 as she was working at about age 10/11. So I’m really pleased with the progress.

I haven’t seen the tv programme. But that sounds horrendous. Poor kid. I didn’t realise boxers would restrict like that to get into a weight range. It is terrible.

@Weightlossworried
That sounds great. A little treat on a Friday. Perhaps not the meal as she chooses the lowest calorie. Tips from the coach if it’s really too low is to say, that’s not much, you need some chips with that (if she eat chips). We always ate at the same place with my family when she was really ill. The first time I said nothing and just ordered a couple of chips as a side and put it on the table to share and she had a fair few. Then the next time, I insisted she got her own saying the above. She always ordered a Pad Thai curry and no protein when she was ‘vegetarian’. So I gave her the choice of choosing the haloumi option or bringing along some cheese from home. She now eats chicken again, so that’s no longer needed.

And yes, it all costs money unfortunately. I cringe at the amount we’ve given to dd over the past 2.5 years to get her through this. I feel as if money slips through my fingers like water.

Thanks for all your well wishes. Dd is feeling so much better today. Now I’m looking after dh as he had quite a nasty day surgery yesterday. I am so much more aware of things dh needs help with (I need help with stuff dh is good at and I’m not btw, it’s likely all 3 of us are ND). And what I’ve realised is they both need telling when to take their tablets (ie planning and scheduling) and reminders and such like. It’s amazing what you just do automatically until you stop and think about it. I’m just really aware now of the areas dd needs help in, because helping dd to do things like organise herself will really help in the long run. She’s not playing ball atm of course…

Thanks @Mummyoflittledragon and @Weightlossworried
The appointment was a mixed bag. I did speak up and the weighing was much sooner, and we left sooner too to let DD do the work she needed. The therapist has also arranged for the dietician to see us, with an agreed brief given it's not gone well in the past. And is referring DD for adult CBT to help with her food behaviours and fears
But we've had another small loss, which is disappointing. She's at 92% wfh which is clearly not ideal but at least not alarming, for now. We're all a bit baffled as she's eaten more and exercised less than the previous fortnight when she restored. Small numbers, but we'd been hopeful we were on the right trajectory. We've agreed a tweak, again, and DD has identified being generally busy and ending up with less sleep won't have helped, which was music to DH's ears as he's always commenting on sleep. Half term next week will help with that
She's down of course tonight, but we've got an 'easy' meal and she has a commitment to go to later that will distract her.
And we just keep on keeping on like we all have no choice but to do

Sorry to hear she's had a small loss @LurkyLurkyLou I guess it could just be normal fluctuations that anyone could have. Well done for speaking up, I know how hard that can be!

I'm glad your DD is better @Mummyoflittledragon I hope your DH recovers quickly too.

With meals out my DD will not be nudged into eating more unfortunately which is why we tend to avoid it for a main meal. There's not much to lose with lunch though as she's never eaten as much as she should so whatever she chooses will probably be no less than she'd have had at home.

Hi I'm sorry for not being very active on here lately or being able to follow how everyone is doing - I've seen some positive updates however and I'm really pleased for those of you who are seeing some glimmers of hope.

Unfortunately things here aren't great and I am really struggling and now feel I have nobody to turn to.

DS is still restricting his eating quite significantly and on top of that is drinking excessively at parties - we have had to pick him up on numerous occasions now after phone calls from friends. He seems to only last a few hours and when my DH picks him up everyone else appears to be relatively sober. He is drinking really fast and obviously it's on quite an empty stomach. This happened again last night.

We were concerned about his eating last week and left messages for the ED team but nobody called us back. DH again left messages yesterday and eventually received a call to say that DS did not want them to speak to us and therefore they could not give or receive any information from us.

We have no idea how much involvement Camhs has with him, we don't think there's a lot.

I am absolutely incensed but also incredibly worried. I've googled the guidelines and it looks like they shouldn't be saying that so I need to take it further.

But honestly I'm just exhausted by this constant fighting. DS is angry all the time, the atmosphere at home is awful. We have taken a step back lately and just tried to be very calm and 'easy going' but that hasn't worked.

We have no family around, they're all some distance away. Oh and his private psychologist wants to end her sessions with him as she feels they aren't helping and he needs more 'specialist' support from Camhs (which is a joke obviously).

I'm sorry to rant. I just don't know how much longer I can deal with this fight.

I'm so sorry to hear this. You must be worried sick and exhausted.

You may not want this fight right now and that would be completely understandable. If you do want to pursue be confident there is absolutely nothing that prevents you from providing risk based information. It is not a gdpr breach, and it is not a breach of confidentiality, although services may try to tell you it is. You can funnel things through PALS although that is not super effective; and then go through the governance route of complaints, service manager, CEO complaint. I can see you might not have the energy to do that right now, but it is there and ultimately it will be successful because they are wrong and they can and should act on information you provide, even if they can't tell you they have.

Your MP will likely also help if you ask.

I am sorry all roads feel they lead nowhere. It will change, eventually.

I'm so sorry that you and your Ds continue to be so badly let down by CAMHs @littlebabycheeses99

I can't believe that they are telling you that they can't receive information - this is clearly wrong and absolute madness given there's a good chance he's not engaging with them.

You shouldn't have to be fighting like this, it's appalling.

I am so sorry that you are continuing to struggle to get the support and help your son needs @littlebabycheeses99 . We have had experience of CAMHS for both our sons, and some support was very helpful; other support was dire. 17 is a very difficult age with respect to services. When our eldest DS was 17, he needed intense support and provision (not for an ED) ,but because he would soon be 'transitioning' into adult services, the provision was never put in place. When our youngest was 17, provision stopped for him due to 'lack of engagement', even though it was known that he had a recognised anxiety disorder that made accessing any provision extremely difficult without support. It is only recently after several major crises that services have made an effort to engage with him again.

I do not know if this would help, but certainly I first approached my son's most recent mental health worker by sending an e-mail, stressing how caring for my son was affecting me. I asked for guidance on how I could support him and so on. This gave me the chance to share with my son's worker, the extent of my son's behaviours and perhaps, whilst not breaching confidentiality, to open up a little dialogue.

Drinking without sufficient nutrition and especially after purging, is an effective and dangerous way of getting the alcohol quickly into your system. I wonder if your son is trying to 'fit in' - my eldest son did this at 17 (indeed, he was thrown out of a tier 4 CAMHS unit because he bought alcohol in for other patients - he was 17).

You are correct, professionals should be taking this seriously. I wonder if, the next time your son is drunk, you take him to A and E or ring the emergency services!. It may seem a little dramatic, but people do not know what his electrolytes are like or whether the alcohol is really messing up his system.

Thank you @sum12luv @unbuckle and @Weightlossworried

I ended up going back to bed this morning as just couldn't deal with it. DH sent a strongly worded email to the CAMHS manager and other people dealing with DS (helped by ChatGPT!) outlining the law essentially and giving them some information. DS has been self harming too. It's a lot to deal with.

We'll see what happens. @sum12luv DS is definitely trying to fit in, we think he's autistic but he's trying desperately hard not to be!

I just wish he'd accept himself as he is. He is so funny, articulate and engaging but we haven't seen that side of him for a long time now. Breaks my heart.

@littlebabycheeses99 it is ok not to be ok. We have all been there. I used to struggle reading others positive posts, but we need them and our brains need to read them, as we need to know there is hope.

Thank god for ChatGPT. I really hope you get a useful reply. Your son one day will be very grateful for your help, for now, look after yourself and keep talking on here. We are here to help xx

Thank you so much. My DD is back from uni for an evening so I'm enjoying spending time with her and catching up. She's having a fab time thank goodness.

@littlebabycheeses99 I am so incensed for you. Your services sound awful. I hope that your DH email has some effect.

How has your DS been eating recently? Is he still losing weight? Surely he must be getting close to a point where there has to be intervention by force if necessary. Is his college still speaking to you ?

Well today DS has told us that he was discharged from the CAMHS crisis team 2 weeks ago and that he is also being discharged from the ED team because he is 'in recovery'.

@10YellowTulips he is eating well below 3000 calories. I'd say around 1000 a day if that. He has also started walking a lot.

He also has another party next week.

He has told me how much he hates me, that I'm completely responsible for him being unhappy his entire life because I pushed him into doing things he didn't want to do (not true - but that's his perspective) and that his poor mental health is entirely my fault.

I'm in bits.

Oh @littlebabycheeses99 I really feel for you. I'm not surprised you're in bits.

It may not be true about being discharged - I certainly hope it isn't and that something comes of the letter your DH wrote.

And I'm certain it's not true about any of this being your fault. The way you have been fighting for him as he continues to push you away makes you an incredible mother.

Mine was discharged under similar circs. They described it as being because they are totallly fine but the reality is it was because of non engagement. I'm shocked that could happen to a child. My experience is the hospital will do everything it can to stand by a clinician's decision, so if your DC is correct (they may not be, they may just be looking for you to stop asking) I'd recommend going via the gp and mp rather than the hospital hierarchy.

It is so so hard, and what helped one person may be absolutely wrong for another. I did try pushing back hard on the discharge and it got me absolutely nowhere. What has got me somewhere, slowly, is stepping right back. Doing a daily check of proof of life. Never giving advice. Waiting. I know @Mummyoflittledragon has mentioned Jenny Langley - her advice to me was to let the crisis happen. Weirdly enough, when I followed this, the crisis never materialised, and although i wouldn't speak of recovery, the weight and intake are very slowly very much better.

Jenny also has some great resources around carers rights, and if your DC has not been discharged I'd recommend these for a more proactive approach.

Thank you @Weightlossworried that made me cry. I just don't think I am, but thank you.

@unbuckle the letting him wait til he hits crisis point was what the doctor advised me (my doctor - after I hid rock bottom). And we've done that for several weeks now, thinking he had actually reached his rock bottom. But he's getting worse. We've had to collect him multiple times from parties as he's so inebriated and he's admitted to chugging straight vodka. He's really not eating much and he's walking a lot more. It's really difficult to stand by and let it happen.

I do feel that we don't have many options left open to us anymore though.

The one saving grace is that he is still going to college and revising for his mocks and is quite intent on getting to Uni. I told him yesterday that he will need to be 'well' for Uni, but he's very dismissive. I don't think he realises how unwell he is.

Will have a look at all the Jenny Langley stuff, thank you.

@littlebabycheeses99
I am so sorry. You must be absolutely exhausted right now. The mental load, the strain, the pain. I also spent so much time in bed.

Your ds doesn’t mean it. He loves you. He really does. It’s this dreadful illness and he’s lashing out with anything he can find. And none of this is your fault. Just remember this isn’t him. This is the ED doing it.

As the main care giver, you are the biggest threat to the ED and it is trying to wear you down. The ED loves if you get riled. So I tried to do the opposite, to keep a connection with dd. To ignore some stuff. And to say stuff like ‘that’s ok, I love you. And I have enough love for us both’.

My dd also signed off from CAMHS, as she was 16. She was too anxious to engage. It is terrible that they just allow this to happen. I wrote a very comprehensive PALS complaint, which was responded to by a colleague there. The complaints were largely ignored and glossed over and I felt very unheard. I didn’t have the energy to keep fighting. I would therefore do as @unbuckle is advising.

I hope you will find the strength to get in touch with Jenny and the Charlie Waller trust and do the workshops. I get how hard that first step can be. All the information is in the resource thread. Jenny has an amazing way. She speaks in a soft, soothing, but firm voice. Always so positive. Dd regressed to the maturity level of a 10/11 year old when she was really unwell And I learnt to talk to her in a soft and soothing voice. And started calling her sweetie. Sent her little texts of connection. She did respond positively to some degree, even though the face to face hatred continued.

I think @sum12luv is correct that you should take your ds fo A&E when he’s next drunk. His behaviour is extremely concerning. Even if he’s eating 1000 calories, I presume you don’t know if he’s keeping this down. And as he’s walking a lot, he will be shredding calories.

My dd masks heavily. And she tries everything to fit in as well. The masking and copying the popular year 11 girls, is what tipped her into anorexia in the first place. She came home on Saturday again. This time, because she didn’t want to go out and didn’t know how to tell her friends. And asked me to text her asking her to come home to see dh. I thought it a bit extreme to do this. But dh said he struggles to not get swept along with the crowd. So I can imagine your ds, who doesn’t have the resources my dd now has, may be using very maladaptive coping strategies.

It is great your ds has his studies as an anchor. He won’t be able to understand your concerns and university, because of the changes to his brain. And he is currently unable to respond to your reasoning. His brain is too starved. You can only really introduce the concept and realities of taking care of himself and introduce any kind of cognitive dissonance when he has started to eat enough. It sounds as if he is in a state of anasognosia. I have posted a link in the resources thread. https://www.mumsnet.com/talk/eatingdisorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults?reply=155561912

@LurkyLurkyLou
I hope you’ve managed to get over the blip. And that your dd is ok.

@Weightlossworried
My dd has never eaten much at lunch either, so I get your approach. I hope Friday went ok. Thank you for well wishes for dh. At least dd is recovered enough for me to nowcope with looking after him!

@unbuckle
I am pleased to read your dc continues to improve, slowly.

@sum12luv
How are things with your ds?

Oh @Mummyoflittledragon I notice your post is in the wee hours. Hope YOU are doing ok too. It's good your DD is leaning on you and DH to get through these challenges

My DD has been away for the weekend with my family, and DS. She went with lots of "safe" food, and she was with people who know she has an ED and broadly how to keep an eye on her. Of course I've been worried the entire time she's not eating, whilst trying not to hassle her about it. They're back today and she knows if she didnt eat enough we'll get back on track when shes home, and if needs be cut exercise. I know its and important step towards being more independent, and a safe way to do that, but I'll be glad when theyre back and I can check on her! Particularly as they have a long long drive to get home...

@littlebabycheeses99 my heart goes out to you. Hoping someone can provide some meaningful support soon

@littlebabycheeses99 this all sounds terribly hard. I dont think you should underestimate the strain this puts on you, so do rest. The advice to be kind to the child and try to ignore the ED driven horrible comments is really good advice, I think. And you are doing a great job at that. I truly hope you have some easier days soon.

As was said above I also wonder if the excessive drinking is to cover anxiety and to fit in. I was so shocked when I realised how much shame and insecurities by dd was experiencing - when all I saw was the anger she expressed. That seems to be a common experience seeing comments here.

@Mummyoflittledragon im so glad your dd feels she can call on your for support. It sounds like your dh 's perspective was useful and I love to hear how the 3 of.you support each other.

@Weightlossworried I have everything crossed for you, that the weekend went well. Even if it didnt go perfectly hopefully your dd had some fun and there were some good moments from which she can gain strength.

My DD who is 16 has just been referred for specialist support. She has a bmi of 14.1 but has never severely restricted, just not eaten enough to gain any weight about 1200-1500 cals a day. We noticed it got worse during her GCSEs but has taken months to get to the point of a referral. Any one know if she

Whether she is likely to receive any support and what form this might take?

Hi @Worriedmum2026

Sorry you have to join us here. I would hope she would receive support, she certainly sounds like she needs it. Some areas of the country seem better than others at providing it though.

When my DD was referred we had a long initial appointment where they took lots of information from us and did some physical checks; blood pressure, pulse, weight, height and referral for ECG and blood tests. We then had a nutritional plan from a dietician and weekly appointments with a nurse for physical checks and for them to try and talk to her - although she's never engaged.

The main treatment for eating disorders is family based treatment that involves us parents supporting them with 3 meals and 3 snacks a day. You take full control of what they're having and support them through every meal and snack (and afterwards where they may be distressed after eating). The aim is to restore them to a healthy weight as quickly as possible.

We had to stop all physical activity but she was allowed in school. We met her at lunchtimes to make sure she ate.

I hope you don't have to wait long to be seen - it was about 10 days for us although a nurse from the eating disorder team called us quite quickly to give us advice while we waited.

There's a great resource thread on this board that's worth a look at.

Thank you. We have been trying to gradually increase her intake with some success the last few weeks but really could do with specialist support as she has intrusive thoughts after meals and sometimes gets distressed. She gained 1/4lb this week though

The distress after meals is really common unfortunately. My daughter won't often. let us help with that at all but if yours would let her, try your best to distract her. Just get in the car and drive or do some colouring/watch TV/anything to help her get her mind off it. Mine likes jigsaws, we've done hundreds over the last 6 months and spent a fortune in hobbycraft!

There's a lady called Eva Musby who has some great you tube videos about how to help around mealtimes.

The recommendation would be to get her on as much food as possible as quickly as possible rather than a gradual increase, as incremental increases can be more challenging than giving her what she needs straight away. Most nutritional plans will be aiming for 2500-3000 calories a day although some young people need more than that.

It's great that you've seen some weight restoration already. Most services aim for 500g-1kg a week.

There's some really supportive and knowledgeable people on this thread and I'm sure some of them will be along tomorrow with more helpful advice x

@Worriedmum2026
I am sorry to see you join. And that is a very low weight. I can see you’ve had some excellent advice already on the thread. Your dd will hopefully have been referred urgently to CAMHS. In that case, she should be seen pretty quickly. Even though she’s not restricting below 1000 calories, over time, this leads to a massive accumulated deficit.

As your dd is 16, CAMHS will need her consent to talk to you. If she refuses, they won’t be able to. And I’m just letting you know in case you need to pre-empt that with a ‘they’re going to want to talk to me, is that ok with you’ conversation before attending. I presume that won’t be an issue for you. She seems pretty compliant atm. As she is under 18, however, they will want to take a family based treatment approach, which means your involvement. And ideally they will want to speak to you and her dad together if possible.

What generally happens from my experience is they will have a pre discussion with all of you, then will want to talk to you and your dd separately and take a full history from you. Then presuming your dd gives permission, they will then talk to you again at the end with their findings. They will also take bp, pulse, weight and perhaps bloods if your dd consents. And an ecg. Or send her for an ecg depending on their findings.

I can’t say what will happen after that. They may or may not give you a diagnosis. If they do, they will come up with a treatment plan. As @Weightlossworried has said, they’ll recommend 3 meals and 3 snacks. And start to taper the food amounts. I can see you’re already attempting to increase your dd’s intake. It’s great that she is responding. And she will get upset, feel guilty etc. The good news is that she’s aware and willing to change things, even if she’s finding it hard.

There’s a resources thread. And I linked it in my last post above if you want to take a look at what information is out there to help you. For now, it is very important that you stop all physical activity immediately. Especially because your dd is very low weight. You really want to keep her heart rate down. Exercise for someone so emaciated is dangerous.

@LurkyLurkyLou That’s lovely your dd is able to go away now. It’s so important to have some time apart for both your dd and you. Recovery is such exhausting work. I hope she’s come back refreshed and well nourished and that you managed to have some time for yourself.

I’m doing ok thanks. I hadn’t had the energy to catch up on the thread before now, woke up in the night and posted, then went back to sleep. I really wasn’t ok mentally by the end of last week and am much better after a good old cry and catch up with the coach. It just seems to be one thing after another here and dh’s surgery really has been too much. Lovely as it was that dd wanted to come back at the weekend, I really could have done with the rest. So I had a big nap in the day and am now just about ready for bed.

@Thisnowtoo As for dd leaning on me, yes, it’s good she’s realising she doesn’t have to be completely independent. She can go a little too far though. She decided to go for a drive in the stormy weather on Saturday, late evening. And when I tried to persuade her that going on a drive in pj shorts isn’t a good idea in case she breaks down, she told me ‘as if you’d leave me stranded’. 🙈 It’s so hard to teach all of these skills. And I’m really pleased to read you feel dh and I are supporting each other, because we’ve had such a rocky time over the past few years that it nearly broke us.

As for you. How are you and your dd doing? Do you think she’s still eating ok?

Thank you so much @Mummyoflittledragon for your detailed reply. Am going to book onto those workshops.

I hope your DD starts to be a little more settled but it is good that she feels able to come home and is happy to do that even if it's avoiding her friends at the minute. Hopefully she will gain some other strategies as time goes on.

I'm sorry that you have been struggling mentally. Having to deal with an ED on top of all the other 'life stuff' can be so so difficult can't it? It seems terribly unfair. We have got wider family issues going on that we are also trying to navigate and it is completely exhausting.

I hope you manage to carve out some time to yourself and that you are able to relax in some way.

@Thisnowtoo yes the drinking is definitely anxiety and trying to fit in, the speed that he drinks is frightening.

@LurkyLurkyLou I hope your DD has had a lovely time away and that you can now relax. Hopefully next time will be easier for you.

@Worriedmum2026 I'm sorry you're here. We are right in the thick of it but there are some wonderful posters on here who will be such a help and support for you.

As for us we have a phone call with the team manager of the ED team at CAMHS today so will see how that goes and if she will disclose anything.

I don't know how we're supposed to be navigating DSs eating when he won't eat anything we cook, there is no guidance or monitoring from anyone, he is now 'vegetarian' and he is continuing to eat so very little.