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…

@Weightlossworried I would agree too. I would also make it really clear to DD that you have changed the appointment for her.

Who calls you? I tried to make friends with th admin team so they could help me change the appointments!

Well done DH, we like other people calling!

@Mummyoflittledragon I really feel if she can find some good friends who respect their families and themselves, this could be her future sorted. I really do have a good feeling xx

The nurses tend to call themselves which is fine because we can discuss an appointment time but when it's the psychiatrist, his secretary calls and basically tells us 'Dr M wants to see you at this time'. It feels non negotiable and they can't change it without discussing with him..

I could be stressing about nothing and he'll be absolutely fine about changing it, you never know what you're going to get with him.

I've told DD that I understand her not wanting to go and I'll rearrange it.

@Mummyoflittledragon thank you. My dd definitely socially isolated herself, it’s this
awful illness. She was good at making friends when she was younger. Yesterday she admitted to ignoring messages from multiple friends who have reached out.
Hope the new friends your daughter makes at uni will be a good influence and will encourage plenty of trips home.
As for GCSEs, the special setting might mean a few less but not necessarily. They said they would really focus on the subjects she needs for the next steps. She’s adamant “she doesn’t care about the future because she doesn’t want one” so I will have to try and drag some sort of choice for a levels out of her so the setting so they can focus.

im totally with everyone on the appointment doom! Our previous worker has a habit of that and I felt really guilty as it was usually my work preventing specific times. Our new workers are booking things a month in advance which is great.

@10YellowTulips
Oh bless her heart ❤️. These feelings will pass. Now that you know your dd has ignored friends, maybe she will respond if you nudge her into inviting some over or even just sending a message / snap or whatever. Idk if that would work. It seems common to isolate from friends when restricting. My dd is the opposite and isolates from us, which I’m sure you’ve gathered by now.

I know what you mean about dragging things out of your dd for A levels. Hopefully your dd will work it out. My dd was a bit the same. But much worse for UCAS. With some help from others, I got together a last minute personal statement. I also emailed the HOY the course numbers and details dd had decided on with me as she wasn’t capable at the time of doing any of this stuff herself.

Writing this, I’m suddenly aware of how far dd has come in quite a short amount of time. It has seemed so relentless, constantly pulling her out of relapse and trying to keep her at least a little focused. She still has a long way to go, I know.

As for seeing dd, I put some ground rules in before she left. At least one text and one call a week and one visit a month. So now it’s action time. We managed to talk to her on the phone for almost 1/2 an hour today, which is a result. And we have now said to visit home within the next 2 weeks, otherwise we will go and see her. She spent last night 10 minutes down the road and went back without dropping in to say hi, so dh and I feel justified in wanting that.

Dd mentioned that the second girl she’s made friends with also visited home recently, so I think she is also close to her family. That’s really good news for us. And hopefully dd will eventually copy their blueprint. Dd apparently does something called ADHD Morphing, where she takes on the personality of those, she spends most with (the results aren’t always pleasant). Apparently it’s common and will resolve when she is more grounded within herself. Dd is really happy to be similar to the girl she gets on best with and has said they are basically the same person. And I’m really optimistic.

Hi all just catching up, had a stressful few days here as I had to do an emergency dash to pick dd up on Saturday as she’s really unwell. Ended up spending the night in A&e as they were worried about meningitis or sepsis. They wanted to do bloods and give her iv antibiotics but dd refused because of her severe needle phobia.

Anyway they tested everything else and decided it’s a bad case of flu. She’s hardly been out of bed since then and had to crawl to the toilet overnight.

Not great timing and she’s going to lose weight as hardly eaten anything.

@Mummyoflittledragon interesting re the morphing being an adhd thing, my dd does this and she also mimics accents. One of her housemates is Northen and you can hear DDs voice change when she talks to him. I think your requests are very reasonable, I actually like to hear from dd every day even if just a thumbs up to a ‘you okay’ text!

@Weightlossworried that’s annoying re the appointment, hopefully they’ll change it for you. Glad your dd is getting on at college okay.

@10YellowTulips I’m sorry your DD is struggling so much. Is she taking any medication? She does sound very low, my dd also used to head bang and it’s very distressing.

@Girliefriendlikespuppies I am so glad DD called you! It’s a horrible strain of flu. I reallt hope you can avoid getting it. I hope she feels better soon.

@Weightlossworried I hope you got the appointment rearranged. I used to have my hands over my ears when DH was on the phone to them, I just found it all so awkward!

Sorry I've been AWOL - I should have name changed before posting on the thread and it's possible DD could easily find me if she looked. I'll be back for the next thread with a name change as sadly I don't think things will have resolved by then. Safe to say we're getting support but it's being resisted. I'm finding all our posts very useful, if only for solidarity.

@10YellowTulips I'm so sorry to hear about the difficulties with your DD and how she is feeling so low. Is she on any anti depressants at all or any other medication?

@Girliefriendlikespuppies how worrying for you - am glad it was 'only' a bad dose of the flu and not something more serious. My DD has freshers flu at the minute and just started lessons today - a full day of feeling pretty ropey apparently, poor thing. I don't think it was full on flu though and nothing compared to your DD.

@Weightlossworried hope the appointment gets sorted.

@Mummyoflittledragon lovely to hear some good updates from you, I really hope your DD finds her people and that they are a good positive influence on her.

I hope everyone else is doing ok, sorry to anyone I've missed.

We had a better day yesterday with DS actually talking to us for once - this is fuelled by his desire to go to his gig on Thursday. We have set some ground rules in place and have said he can go if Camhs can confirm to us that he is 'medically safe' to do so at the minute. He apparently called or emailed them on Sat, then DH also called and texted today... and crickets. Not ideal, not only do we need to know he's safe, but we also need some more Sertraline urgently - it's run out and I'm giving him mine at the minute because nobody seems to be sorting it. It is incredibly difficult when DS is not exactly proactive or helpful with any of this - and when he has blocked us from talking to anyone. But you would think the GP or Camhs would be on it with the medication wouldn't you?

Hoping to speak to his college tomorrow so maybe they can give me a bit on insight.

There has been more talk of Universities and open days and I have reiterated to DS that he needs to be well in order to go and that continuing the way that he is will no doubt result in hospital admission, which in turn will mean missing college and potentially deferring Uni for a year - which he definitely won't want.

He starts DBT this week apparently - we'll see how that goes.

That all sounds really hopeful @Mummyoflittledragon , especially the 1/2 hour phone call.

How stressful @Girliefriendlikespuppies , poor you and poor Dd! I hope she has a speedy recovery.

@Pearl97 DH is much better than me at speaking to them, I don't think they stress him out as much! He just told them we wouldn't be going to that appointment and gave them times DD is available. I just have to not ruin it now by folding like a deck of cards if they ring back with an unsuitable time!

@chillikat if you ask Mumsnet they may change your username on this thread if you need the support and want to post? I accidentally used a different name on here that links to my other posts and they changed it for me.

I'm glad you've had a better day @littlebabycheeses99 I think the medication issue is appalling actually. Especially since they've cut you out of the loop. They've made themselves solely responsible and now they're failing him. I hope you get some joy from the college today

@Weightlossworried you sound so much like me!! Oh yes that time will be fine … knowing it won’t be! Maybe let them leave a message. I’m not adulting today!!

@littlebabycheeses99 can I just say how proud I am of you. You’ve come such a long way. It makes me happy to see you feel safe here and you are now able to comment to help or support others. Keep going and keep looking after yourself. I think we all find that we feel calmer (other than when the feeling of doom reappears!) but we do feel able to do things we never thought possibke a few months ago.

Chilli we would love to hear from you so def contact admin.

@Mummyoflittledragon I really do have a good feeling about your DD. I think Uni is actually just what she needs. To be around people that want to have fun but that look after themselves and love their family xx

Thank you @Weightlossworried and @Pearl97

I shouldn't have spoken so soon about DS. He has money for college every week for food but we've realised he's not spending it on food, and seems to have developed a bit of a shopping habit (which seems compulsive).

We outlined to him only the other day that we expected his college money to go on food and nothing else - and if that didn't happen then he wouldn't get the ticket for the gig. Last night there was a flurry of activity on the card and he's ordered himself some random stuff online.

So now we're in the situation where we have to tell him he's not going to the gig - which will mean he'll spiral. And of course he has no money left for food at college now.

It feels like we've got a whole host of other problems alongside the eating disorder tbh.

@littlebabycheeses99 that all sounds really tough. As you will read on here, having an eating disorder and particularly if you’re purging and low calories, means your brain doesn’t work properly. We could write a book on here on what our children have done while their brains were deprived of nutrients.

It’s almost a cry for help without them know if it is. I would say you really need to concentrate on the ED. He is spiralling as most of our children have. He needs support and it’s not fair that you are doing this alone. I really think you need to ask college for their support. I would let them know how worried you are xx

@Pearl97 I'd not thought of it like that - so compulsive spending could be part of the brain not working effectively without food?

We have nobody helping us with the food side of things unfortunately so feel massively stuck at the minute.

How do you think we should approach the not spending his college money on food situation? Do you think we are being unfair? I'd appreciate some help as we are fairly new to all this, and struggling. Thank you so much.

@littlebabycheeses99 I really do, he seems to be doing all sort of things he’s never done before, all at the same time as starving himself. He seems manic.

It is also really hard to talk to them at this stage or get them to understand you are trying to help.

It is totally understandable that you’re struggling. How is he doing at college? Have you any idea if he’s doing the work. Is he actually attending?

For the time being I would probably just reiterate that he must only spend the money on food. I think this week it will be this and next week it could be something else. He definitely won’t be able to think clearly or understand when you try and get him to think about what he’s doing. I really think try and keep
him safe and spend your time trying to get him help. He probably has no interest in what he bought online.

Keep talking. It always helped me to type it out as I had no idea what I was doing xx

Thanks to everyone who replied about periods, it does sound like there's no set pattern. DD is well past the weight at which her periods started (she started when she was just 11), but they stopped before she was even close to being underweight, so maybe her hormones are just particularly sensitive to restricting intake. I do plan to ask the hospital before she's discharged, but they've tended to be very vague when I've asked them about longer term implications.

In terms of a support plan for coming home there is very little so far, just one outpatient appointment per week with her existing therapist. Unfortunately this will only be for a couple of weeks as she turns 18 very soon after discharge. So far we have had no contact from adult services so absolutely no idea what they're going to offer.

@Weightlossworried I totally get the appointment stress but I would also second not letting them disrupt her college lessons. IME services totally underestimate the value to our kids of having some semblance of normality, and feeling like the eating disorder is not the only thing that exists in their lives. It gives them hope and purpose, and they really need that.

@10YellowTulips I am so sorry your DD is struggling so much. Not having a friend group makes this horrible disease even harder to cope with I think. I would definitely consider the smaller quieter setting, school can be so overwhelming. It's good that CAMHS are aware and making plans for more support. I hope you're taking care of yourself too, it is so distressing to see your child in that state.

@littlebabycheeses99 working with the college sounds like a good idea but I wonder if PALS can help at all at this point with the sertraline aspect at least? It can't possibly be acceptable for someone to be suddenly left without access to that kind of medication, all the literature says you mustn't stop antidepressants suddenly, so it is a safety issue.

I wish I knew what to advise about the spending, they definitely aren't in their right minds at that level of starvation. With the gig it's not so much about consequences for the spending, it's more the worry about him not being physically well enough. I'd be hounding CAMHS at this point I think, every professional we've been involved with has said "they can't make rational decisions while they're starved", it was the justification for sectioning my DD, so how can they argue he's rational enough to exclude you from being able to support him?

@Mummyoflittledragon glad your DD seems to have got in with some positive influences, fingers crossed things continue to go well.

@Girliefriendlikespuppies hope your DD is feeling a little better today.

Just had Camhs on the phone to tell us that DS has not been taking his meds since August!! I despair.

Gosh I'm so angry with him right now. We spent a lot of money on a private psychiatrist because the doctor wouldn't prescribe him Sertraline. He was desperate to go on it - it was all his idea. So we sorted it all and went to significant trouble to do so, and used money that we don't have...

@littlebabycheeses99 absolutely understandable frustration!!! Has he told CAMHS why he stopped talking it? Let’s see the positive that they spoke to you about it,but (insert swear word if you would like) you must feel so angry with DS!

@Pearl97 no, but I think it was around the time he was drinking excessively at parties and the psychiatrist told him not to - but he went and did it anyway so she said he would have to reduce his medication with a view to stopping it if he continued with the drinking.

He got really angry about all of that. And I think he stopped taking the meds in defiance. Despite knowing that he should have been reducing them slowly.

Thank you all for your uplifting messages for dd and me. It really is so nice to get some lovely feedback. ❤️

@Pearl97
Thanks. I do think you’re right about dd. I think it’s her time. Xx

@Weightlossworried
You didn’t really say how things are going. I hope that’s a good sign?

@littlebabycheeses99
Oh wow. I can see is that CAMHS have now breached confidentiality, which I can imagine is a slight relief. However, that in itself is very worrisome. Did they say anything else or indicate they would talk more to you?

As for the spending, we have been and are going through this with dd. Dh gave her his card on her phone from circa the end of year 11. He also put the app on my phone so that I could monitor what she was eating every day. She had a meal deal most days and ate out a lot. So with all her make up and other products, it was costing us a fortune. The coach kept on telling me to just let it happen if this is the only way she could eat.

It really started to get out of control after A levels. And culminated in her putting 1.1k on dh’s credit card in June. About £500 were clothes, most supposedly for her birthday… but she just wore them and complained about not getting much… It was only at this point that we said enough and gave her a budget from July going forward, which we thought should be the university top up from minimum to maintenance loan spread over 12 months rather than the 9. We did warm her to save some. However, she’s spending most of it on shoes, clothes, partying and also dipping into her savings, that’s before paying her accommodation (which she’s obviously paying).

Your ds sounds a like my dd in a few ways. The spending is a dopamine hit. Dopamine hits are addictive with ADHD. And dd has other addictive behaviours. Your ds’s drinking also sounds poten addictive?

Can you do like me and monitor your ds’s spending? As in if he’s going to Tesco as well as elsewhere and buying food? And maybe give him a budget for other stuff? I understand it’s infuriating. I have often sworn out of dd’s earshot.

Do you know what his step count is? Ie To see if he’s compulsive exercising. It’s another indicator of where he is. You can look if he has an iPad.

@Girliefriendlikespuppies
I hope your dd is feeling a little better. I imagine she will be feeling weak for a little while yet. Thank goodness it wasn’t more serious. Have you dropped her back at university? Or is she with you?

I don’t think dd would tolerate every day communication. Dh called her earlier (so that’s only 2 days later than the last call) and she’s agreed to come home next Wednesday to Thursday so that they can go and get her EU passport sorted. So we will see her. She was communicative and chatty and I’m presuming she’s eating, even if total crap.

As for the morphing, I hadn’t thought about accents. Dd had been morphing someone, who can be really mean. That’s why the coach first said about it. But morphing can be a great thing if the person is a good influence.

I joined Jenny’s monthly carer session last night. And our dd’s do sound to be doing better than the curve. One poor lady was so concerned that her dd isn’t eating at all. Jenny said BEAT researched that 60% go straight through university without needing to stop. And that of the remaining 40% many returned later to complete their studies.

Hi @chillikat I hope you’re ok and manage to get a name change sorted. I don’t name change. I have come to the conclusion my dd would rather stick pins in her eyes than read my posts. But I get the fear absolutely. I’m glad you’re getting help even if your dd is resistant. All you can do is keep plugging and nudging.

@StressedANmum
I hope the transition will be as smooth as possible for your dd once she leaves hospital and turns 18. I can imagine you are concerned as it will be a big change in approach. My dd decided my input wasn’t required. So until she left home, there were a lot of conversations saying I’d want to know x or y if she were 18, 38 or 58 (random ages) or saying I’d be checking dinner plans with dh in the same way if he were off out.

@littlebabycheeses99 I can totally see why you're angry. Thank goodness they finally got back to you. So has he actually been taking yours or potentially just faking it?

@Mummyoflittledragon I joined a Facebook group recently and felt the same - my DD is currently doing a lot better than most on there. I feel grateful for that but also very scared seeing how bad things can get. I've stopped looking at it because it's freaking me out a bit.

There's nothing much to report from me at the moment. Enjoy the peace from me while it lasts, we have an appointment tomorrow so I'm sure I'll be leaning on your amazing support then! First weigh in since college started so the stakes feel incredibly high.

@Mummyoflittledragon thanks dd is feeling better and wants me to take her back to uni today. I’d rather she have the rest of the week off but I can understand who she’s anxious about missing lectures this early on. She’s still in bed atm so I’ll see how she is when she gets up.

I am worried about her eating at uni, it sounds like she has dropped breakfast and she said she makes up for it later in the day 🫤 her ED started with dropping breakfast so this worries me.

@littlebabycheeses99 not that I want to stress you out further but do you know what has happened to the doses he didn't take? My DD stopped taking her meds at one point, I was handing her one capsule every day with her breakfast, and it appeared she was taking them. It turned out she was hiding them rather than taking them, and we only found out when she took some of the stash as an attempted overdose. Fortunately she didn't take enough to do herself any damage but that was pure luck.

I would be using this as further leverage with CAMHS that it's really necessary for them to break confidentiality at this point, your DS is still legally a minor and he's not capable of making rational decisions for himself at the moment. I would also be searching his room.

@Mummyoflittledragon thank you, we've now been offered a meeting on Friday with someone from adult services so hopefully we'll know more soon. I don't think she'll cut us out at the moment, she's not at all independent at this stage, that's something we need to work on, but I am worried that our relationship will be under a lot of strain.

Glad she's better @Girliefriendlikespuppies but I can see why the lack of breakfast is worrying. I wonder if she's seeing others in her accommodation not bothering with breakfast and is copying? Does she have the kind of insight where she might be able to see how that's something she needs to be careful with?

I'm glad you've got an appointment @StressedANmum I have read accounts from parents who said adult services were better for their kids than CAMHs, that the approach was more successful for them. Fingers crossed that's the case for you.

Thank you @Weightlossworried , here's hoping!