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…

I'm so sorry @littlebabycheeses99 I really hoped you would get some proper help tonight.

I can recommend Beat - they offer help for parents. We did a course with them and I'm waiting for an assessment to do coaching but they definitely focus on helping us as parents too. You don't need an ed diagnosis.

Might it be worth asking CAMHs if they offer any help for parents? Our ed team has a parents support group and have given us sessions on our own with the family therapist. Maybe something like that would be available in your area?

@littlebabycheeses99
It’s only information and suggestions so no need to apologise. I wasn’t trying to pressure you at all. I get you have help already and things are all very confusing. I would just ensure the psychologist you’re using with your ds has experience of working with ED. And as you’re paying the psychologist (idk if the psychiatrist is private as well), they should be able to talk to you and advise whether or not a dietician would be useful.

@littlebabycheeses99 im so sorry that things panned out like that. I would suggest getting the psychiatrist on board to speak to your. DS to reinforce why you called the ambulance.
From what I gather he is losing weight very quickly. When our daughter was down to one meal a day we were seeing a psychiatrist practically every day for blood pressure (sitting and standing) and heart rate. If he continues to restrict heavily, then he will continue to lose weight very rapidly and his bloods will be off and he will need a hospital admission.
You need to be very conscious of refeeding syndrome if he does start to eat again following a period of restriction.
i’m so sorry you have had such an awful day. What he said about going no contact is very hurtful but sadly not uncommon with today’s youth. Once he starts to eat properly again, he will start to think more rationally and he may not even remember instances such as this.
The Charlie Waller Trustand BEAT have free parent workshops, which I would recommend. Apart from EDs they also have workshops on self harm and they have support groups which you can attend and ask for advice.

Thank you @Shanghai101 @Mummyoflittledragon and @Weightlossworried

Am looking into everything you've suggested. I can't thank you enough for your help so far. I feel completely lost and overwhelmed and it's helpful to be able to chat to people who know exactly how I feel, because nobody can understand until they've been through it.

I'm so sorry for anyone who has experienced this, it's horrendous.

@Pearl97 yes it’s quite stressful to make all these meals and take them to the clinic. Although they’ve reduced the requirement to two meals a day for now due to her reluctance. She’s ok when she’s there - it’s just boring.
yesterday was another mixed day - she refused breakfast, snack and lunch. We had afternoon snack and dinner in the clinic which was ok. We’ve been given new therapists and had our first FT-AN session with them and that was really good. It makes me realise just how crap our original therapist was. They are leaving the service now. After the clinic she had a chocolate crepe from a cafe which was obviously a big achievement. But once we got home she was very distressed about it ,to the point where she was crying and hitting herself. So I am doubtful she will eat properly today - will go and try in a minute

@littlebabycheeses99 Im sorry you’re having such a tough time with your son and are struggling to get the support you need through cahms. Can you ask GP to refer to ED services? How long has he been struggling with food? In addition to resources recommended already I would also look at F.E.A.S.T - they have really good resources and also provide and advice service.

@littlebabycheeses99
I know it is all very confusing and overwhelming. And I’m sorry it’s so hard. I haven’t used FEAST, but have heard good things. The details of that are in the second post on the resources thread. The details of BEAT are in the first post. BEAT phones are open 3-6 Monday to Friday. I am not sure if you can live chat with them over the weekend. But there are resources online on both websites.

Did your ds manage to eat anything else yesterday? I think if he didn’t eat anything else (and at least 500 calories), you should be calling 111, option 2 for a mental health crisis. Maybe you will get a more knowledgeable/ empathetic person this time.

@10YellowTulips
I am sorry your dd is finding this so hard. She’s really challenging her demons. And although it must be difficult to watch, she’s actually working really hard. And I hope that’s a good sign.

@littlebabycheeses99 you may have to consider whether your ds will need sectioning, he sounds very unwell. Have they got any bloods from him? He sounds like he is posing a danger to himself.

Im sorry the ambulance crew weren’t more helpful.

We’re plodding on here, haven’t seen much of dd as she’s working long hours trying to get her money up before uni. We had a few days away last wend and I made her eat a cheese roll (cheese remains a fear food even now) she struggled and i caught her picking bits out of it but she tried at least.

I remain unconvinced about whether she’ll cope at uni but we’ll have to see…

That must have been so upsetting @10YellowTulips I hope things are going better than you expected today and that having a good therapist means she can deal with all those overwhelming feelings a bit better as time goes on.

It must be so worrying waving her off to university when you're not sure she'll cope @Girliefriendlikespuppies When does she go?

Yes he had bloods done last week at GP.

He's at a friends today and has eaten a ham and cheese sandwich with lots of butter and will be eating ramen later. I am hoping he doesn't throw it up, but we shall see.

Trying to avoid sectioning at the minute, but taking it day by day. He will eat a lot better outside of the house.

I am also worrying about him at Uni next year...

@littlebabycheeses99
My dd was literally only able to eat with friends for a while and not at home. If your ds is able to eat better with friends, are you able to get him to organise doing this? It could perhaps help in the very short term. However, due to the purging element, I would ideally want it to be at home, so that you can ensure he doesn’t purge. But I appreciate what you are saying about him eating better out of the house.

Unless a reliable adult watches him during and after he ate, you really cannot be sure that he really had that sandwich. Or can you rely on his friends to be truthful with you? At 17, his friends are going to know what’s going on. I did talk to my dd’s friends tbh.

As for university, this is a year away and anything could happen between now and then health wise. He may not even be well enough to continue to study or sit his exams. So please try not to think about something, which is over 12 months away. He sounds very mentally unwell right now. And this is the focus.

I do agree with Girlie about potentially sectioning. He sounds very similar to how my dd was, except she was not purging. And I know how scary this is for you. I absolutely get the reluctance to going down this route. Dd has a medical condition, that is triggered by medical environments. And I kept her out at all costs. I know now that I gambled with her life doing this. Dd was ok. However, your ds could get very ill very quickly. And it is absolutely essential that you do take him if he doesn’t eat enough in a day. Or if he purges after eating.

To ensure he doesn’t purge, you’re going to need to start to monitor him for at least 1/2 hour each time he eats and because he intake is so low, you’re going to need to tell him that if he makes himself sick, you will call an ambulance / take him to A&E and mean it. I would, however, talk to him when your dh is around. He’s probably going to really kick off.

@Girliefriendlikespuppies
I know what you mean about university. I am very relieved my dd will be so close by. How far will your dd be? She does at least sound a bit more malleable than mine (re fear foods, my dd would have a demand avoidance reaction). And she also has a much higher level of self awareness than my dd, so if she does get ill, she will hopefully be aware enough to let you know. I think being a couple of years older also makes a big difference.

Is your dd also adamantly refusing any help from you? It’s not long now.

@Mummyoflittledragon she will be about two hours away so not too bad, she goes in about 3 weeks 😳

She’s not really engaging in any uni conversations tbh, my friend asked me if dd is excited to go and I said I’ve got no idea!

I am glad she’s older though, it’s a shame your dd won’t consider a year out. Dds grown up a lot in the last year and it’s also good to know she’s got a decent amount of money saved up.

I hope all goes well for her @Girliefriendlikespuppies , it must be disconcerting when she won't talk about it as you don't know where her head's at.

Really hoping everyone is getting the support they need. @10YellowTulips I am so pleased you have a new therapist. As I have said on here before, it isn’t uncommon to have some pretty useless members of staff, which becomes more evident when you get a replacement. Most of us haven’t done this before so we trust the process and the staff. I’m really pleased you feel supported now. It also sounds like a good centre if it opens late so you can have dinner there.

@Mummyoflittledragon I hope you’re having a well deserved amazing weekend.

@littlebabycheeses99 how did things go yesterday? I really hope someone from the Eating disorder team starts helping you all. You really do need and deserve some help and support.

@Weightlossworried how are you doing? I really hope you’re feeling more stable. You are doing so well and need to hear that!

@CuppaTandBicky how are things going?

@StressedANmum how are you doing? It’s lovely to hear about your daughters results.

Is everyone’s daughter allowed back to school in September? I remember my daughter not being allowed to school during term when she got poorly. It was such a stressful time.

We're doing ok thanks @Pearl97

We had our second session with the psychiatrist this week and I really like him. He seems genuine and wants to listen to us and help DD. I think it may have clicked that weekly lectures on how bad everything is wasn't actually helping us. DD has started on olanzapine, it's wiping her out but I'm hoping the tiredness will ease. It's amazing how the change in approach has helped me challenge things a bit more. I got DD to agree to trying milkshake this week. She didn't drink it all but even getting her to give it a try was a win after absolute refusal of anything milky for 4 months.

She is allowed to start college and I'm being very positive about it to DD but worried about how she'll cope after so long out of school and the jump to a levels when she's still so unwell. We can only try though.

How are things with you @Pearl97 ?

@Weightlossworried I’m so pleased you feel more able to challenge things. That is the update I was hoping for all those weeks ago when you had the useless nurse! I think the side effect of wiping them out can be a good one. It helps the body to rest and reset which is a good thing.

I also think new surroundings can be good for them. New friends, new people to learn from. Most college students enjoy a McDonald’s most days! It’s good in college that they have access to all sorts of food etc. I remember having a hot chocolate at any opportunity. It all sounds really positive and I’m really pleased. It is really nice to see how far you have come.

@Pearl97 DD is allowed to go to school, she’ll be starting year 11. I wish the holidays were longer, I don’t think we’re quite ready for the extra difficulties school will bring and especially such an import year.
DD struggles with attendance and fitting in. She can’t wake up on time and it finds it difficult. She’s really bright but has a weird thing where not doing well or the fear of not doing well causes her to shut down and not attempt the work.
so we’ve got a lot of issues still to resolve there.
School have referred her to a review board to look at extra support or potentially a specialist setting. I expect we would hear within the next few weeks.

@Girliefriendlikespuppies
On the plus sides, at least your dd isn’t telling you regularly she can’t wait to move out. 😬 Two hours is a fair way. I do hope your dd will be ok and has a great time. Do you still think she’s in denial about going? At age 20, I would feel much more confident as a mum, because those extra years do make such a difference. Is her accommodation private or through the university?

I agree with you about waiting extra year. Dd definitely isn’t making any of this easy for herself. She is booked to leave in 2 weeks, because that’s when she’s paying from… and didn’t realise until she received a text today that the first rental payment is overdue. This means she didn’t read the agreement, just signed it. She then couldn’t find out how to pay and needed our help. I ended up telling her if she goes ahead and does stuff like book and sign for things without involving us, we are going to presume she doesn’t need our help. She replied she’s entitled to a holiday and I was ruining her holiday, didn’t thank us either. This is her 3rd holiday this year. And she still hasn’t worked a day in her life.

@Pearl97 thanks. We are trying. We had a really nice late lunch out at one of our favourite restaurants. Dd is so brittle at the moment with us that it did spoil things a bit as I ended up crying just before we got to the restaurant. But it was nice for the most part. We keep telling ourselves that her vile attitude to us is just a phase. I hope you’re having a lovely weekend too.

@Weightlossworried
I am so pleased you have someone you click with now. It will make such a difference. Things do seem to be a little more positive for you. Drinking any amount of milkshake is quite an achievement. So good job for getting your dd to do that.

As for A levels, maybe you’re aware that kids have 3 years to complete level 3 qualifications. You’d just have to ask the college if it is ok for her to study an extra year. She just needs to ensure she doesn’t sit any exams until she’s ready as once she passes at any grade, I don’t think she is allowed to continue for the 3rd year.

I hope everyone else is ok and has taken advantage of the weather before it turns.

I know exactly how your dd feels on that score of shutting down if she doesn’t feel she’s doing well. My dd does exactly the same thing. She has had lots of private tuition to compensate. Not because she is not bright. She’s very capable. She just struggles to access the classes.

Have you heard of twice exceptional or 2e? https://www.davidsongifted.org/gifted-blog/twice-exceptional-definition-characteristics-identification/

It was suggested to me by the clinical psychologist, who did both dd’s ASD and ADHD assessments that she might be 2e. I think I am as well, albeit not diagnosed with anything. I am a big underachiever and felt very stupid for much of my younger years.

Do you think the shut down could be related to rejection sensitivity dysphoria? Or do you think your dd could also potentially be autistic?

Thank you for everybody's help and support so far. I'm sorry I don't feel I know people well enough to comment on their DC but I will try and follow posts where I can. I am just feeling so distraught and overwhelmed at the minute.

After a better day yesterday and DS spending the day at his friends and eating a considerable amount, we have subsequently found concrete evidence of him purging and he has now admitted it. I think naively I thought he might not be doing it every time, but now I think it's likely.

I have now sent emails to his GP, CAMHS and college and will be following up with phone calls first thing. I have also asked the question 'at what point would you consider that he cannot safely be managed at home and requires hospital or assessment under the Mental Health Act? We need a clear escalation plan if he continues to refuse care'.

So I am preparing for some difficult conversations tomorrow. I understand how serious this is now and I just can't believe that we are in this position with our boy.

Please don't apologise @littlebabycheeses99 We can all relate to being completely overwhelmed and just needing to lean on others for some support.

It's such an awful thing to deal with. I think you're incredible for being so proactive emailing everyone and asking such a good and important question. It can be hard to take any action, let alone the right action when you're in the depths of despair.

One small positive from what you've written - he's admitted to purging. My DD admitting to deliberately restricting food definitely helped her get help. When they deny there's an issue some hcps give their denial more weight than they should. I will keep everything crossed that him admitting to purging, alongside your emails and calls might help get things moving for you.

@Mummyoflittledragon thanks so much, I actually wasn't aware of that. I'm going to speak to college as soon as term starts so I'll discuss that with them. It's a relief to know we may have some breathing space if she struggles.

@Pearl97 thank you, we're doing ok, she's had a nice few days with her cousins visiting so we've been to the cinema and bowling and a couple of other things.

@Weightlossworried so glad the psychiatrist is helping, just wondering, what time of day is your DD taking the olanzapine, is it in the morning? We had to experiment a bit, DD started taking it with supper, she's had sleep issues before so the idea was it would help her sleep, but that made it really difficult to get up in the morning. She currently takes it at teatime, which seems to work out ok.

@littlebabycheeses99 so sorry to hear how difficult a time you're having with your DD. My DD is currently sectioned for her eating disorder and is doing pretty well, it was the only thing that got her to eat a full meal plan, she had 8 weeks as a voluntary inpatient first and couldn't do it, sometimes the eating disorder is just so strong. It is really hard though. If you've any questions I'm happy to answer, although the details may be a little different since we're in NI.

@Mummyoflittledragon hope you have managed to enjoy your weekend despite your DD's moods, they do put us through it, don't they?

@10YellowTulips your DD sounds very similar to mine in terms of her feelings about education and mine is ASD too, so definitely worth considering. She's going to try one A level alongside a couple more GCSEs at college this year, with tutoring to help keep her on track, as she panics massively if she misses anything and really struggles to ask questions in class

Sending hugs to everyone, we definitely all need them!.

@littlebabycheeses99
It’s so kind of you to be thinking about our needs. You are in crisis and the last thing you need to be doing is trying to split your attention. So please, don’t worry about us. We have all been where you are and we are here for you.

I am also really pleased to read you’re now coming to terms with just how serious this is for your ds and are ready for the possibly of him needing to be sectioned. Hopefully they will be forced to do something now that you’ve put the issues down in writing.

I agree with Weightloss. Admitting to having an issue is very important, because there is very little to work with if the patient thinks everything is fine. My dd was totally oblivious to there being any kind of issue for at least 6 months into treatment. There’s even a name for this, anasognosia. It’s not the same as denial. Dd was just totally unaware, due to being very mentally unwell. Your ds otoh has a lot more awareness and is already ready to work with MH professionals.

@Weightlossworried
It isn’t standard for colleges to offer 3 years as they have to apply for additional funding and there is set criteria for when that can be offered. I don’t know exactly what that is. However, it’s for things like your dd’s circumstances, so retakes, illness etc.

@StressedANmum

Fantastic, lovely to read that your dd is doing well. Family time is so important.

And yes, they sure do put us through it. Much as I think dd moving out isn’t the right thing for her in so many ways, she is obviously so fed up with us, that it becomes the right thing. And the respite will do me a lot of good.