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'm sorry I don't have the experience to comment particularly but the fact your DD is nearly up to pre ED weight is amazing! I hope they agree to stop weighing her if that's what's needed.

@Mummyoflittledragon the college appointment was good in some respects, however I did lose it and had to leave the room to sob at one point. My DSs personal tutor was there (who hasn't been great tbh) but also the safeguarding lead - who was excellent and did give me some reassurance. The college is quite a high achieving one (lots of the kids go on to Oxford / Cambridge). She said they have plenty of experience of young people with EDs because unfortunately there is a lot of perfectionism among the high achievers. There is also a lot of neurodiversity.

So it does make me feel a little better that there should be some good support there, however I think DS is going to be furious that we've spoken with college.

They've also spoken to CAMHS and are awaiting a multidisciplinary meeting on Tues before deciding on the next step. She did keep saying to be 'one day at a time' and I know I need to take it day by day - but unfortunately I am a massive catastrophiser and can spiral very quickly.

We also found out that FIL has cancer yesterday so that is something else to deal with amongst all this other stuff 😥

Thanks @littlebabycheeses99 As you can tell I'm also a catastrophiser, hence really struggling to see the positive in the weight restoration.

I'm so sorry to hear about your FIL, what a blow when you're already dealing with so much.

The college appointment sounds promising though, especially as they will work with CAMHs. I'm sure your ds will be angry but you're doing the right thing. Unfortunately I think, we have to make them angry to help them recover.

@Weightlossworried I'm so sorry you are so worried about your DD, although brilliant news of course about her restoring the weight.. is your DD open to talking about how she's feeling? Is she able to separate the thoughts at all? - remember it's not HER who is angry and upset with you - it's the anorexia that is angry. If she is able to see that maybe it will calm her down.. ??

Also, I remember reading about 'extinction burst' which is where nearing the end of weight restorating, the ED has a stronger reaction .. as it dies off ..

My DD has become so sick of the whole thing - the thoughts, the food noise, the constant snack bars, the dietician, CAMHS etc. etc ,.,. so one method she is trying to tell the 'voice' "You're so boring now.." as she so desperately wants to be living a normal life again..

Sending hope that things calm quickly for you all - remember it's just a wave that we need to ride!

@Weightlossworried amazing news about the weight gain! I think maybe we can draw positives from this, I know for you this sounds crazy, and I am a huge advocate for blind weighing, however people can spend months and months blind weighing, then when they do find out their weight, they react like your daughter and go back to the start. We all have to remember that we’re not just trying to gain weight, we’re trying to get them mentally better so they aren’t battling the anorexia every day.

The ED team should now be helping you with the reaction if they don’t want to blind weigh. We can just yo-yo on the scales, your daughter needs actual help, especially as she is essentially weight restored. Have they said what wth they are looking for?

I don’t want to sounds like I’m not agreeing with you, you know I’m a big fan of how you are dealing with things, but I also know what it’s like to go round in circles etc. Sometimes knowing why they won’t blind weigh and if they’re looking to challenge your daughter, is much nroe helpful than we don’t like blind weighing! Keep talking to us, it’s ok to be pissed off xx

How are you @Raspberrysins and how are you feeling about the return to school? Sending positive thoughts. I really feel next summer will be a great one for you! Xx

@littlebabycheeses99 I am glad college were sort of helpful. Please keep asking questions and let them see how emotional you are. It’s ok to struggle with all this, it’s a lot to deal with. We’re here to help l xx

Thanks @Raspberrysins She isn't very open to talking. We can sometimes catch her at the right time but she'll need to calm down a bit from where she is now I reckon. She hates any talk of the ed voice so we never have any luck with that.

That's interesting about the extinction burst. I'll have a read around that. We've had such a positive week where the ed seemed to relax it's grip on her. The weighing has just ruined it.

How is your DD doing? If I recall right she's been struggling to restore weight despite eating to plan, is that right? It's great she can recognise the voice as a separate entity and tell it to shut up.

Thanks @Pearl97. It's ok to disagree with me! The ed team have offered therapy but DD continues to refuse to interact with them at all.

I am going to ask about what would a healthy weight look like for her. Although she is almost back at her pre eating disorder weight, if my WFH calculations are correct that still puts her under 85% and I can't imagine they'll feel she's weight restored there.

I really wish she'd engage with some sort of therapy. She desperately needs it.

@Weightlossworried for me it feels like we have to battle with the ED team. We know our children best. I think you need to have more of a plan. You seem to be like me and like to plan. I think they need to tell you their plan. I feel they may not have one and they should! I would ask them to look at her red book etc and work out her projected weight not others or her height xx

I do like a plan. Weight restoration has seemed such an impossible dream that I haven't even discussed it with them. I will do now though. I know she's at a weight where she could return to riding as we discussed that a while back. When she's more receptive I'll see if we can get her back at the stables.
She's not eaten at all today though other than breakfast.

@Weightlossworried sometimes I wonder if getting their life back helps too. All the talk of food etc etc must have an impact on their mental health. Feeling ‘normal’ must help so much.

You’re in control remember. I know you need to hear it as I definitely did xx

@littlebabycheeses99
It is great the college is taking this all very seriously. I can likewise be a catastrophiser. It’s difficult not to be when dealing with this stuff. They are right about one day at a time. You can’t project at all how things will go. I really thought my dd would be pretty much recovered by now. The coach did too a year ago. Yet here we are. In contrast, other people have zoomed along.

I hope you will see some positive changes from your ds soon. When is he supposed to be going back?

@Weightlossworried
Idk if this is extinction burst. Or whether your dd needs to put on weight. Weight restoration isn’t always enough. Not that we have ever got anywhere near. It can be weight restoration plus 10%. As for riding, I think that is something I’d definitely pursue. There doesn’t seem to be a reason not to at your dd’s current weight.

@Weightlossworried my DD also hates calling it the ED voice - she said it's just her thoughts - so that's what we say instead.. but the anorexia is clouding her thoughts. Do you think your DD was underweight prior to the ED, or do you just think she's smaller than average for her age? They do like to know about how they were growing up as children too for this reason.. I have also been told 110% WFH is often required, but I haven't worked out what that means for us.. we have such a LONG way to go still!

@Raspberrysins i was very reluctant for a long time e to work out what 110 percent would be!

I then heard from others about the red book. Like when we go to the doctors and they ask about birth etc and you wonder why it’s relevant, they went through the whole red book and somehow worked out what her weight should be. It actually wasn’t 100 Percent weight to height, it was lower. For some it will be 110 Percent etc but it is worth having hope that they can recover and be a stable weight that is achievable xx

Thanks everyone for your support yesterday. I really thought we were in for a terrible time of it. However, while she struggled to eat enough she did eat a small amount and to my astonishment by the evening she was doing a lot better mentally. She spent time with me and opened up a bit. I couldn't believe it. I don't know whether it's her being a bit more weight restored or the olanzapine.

Frustratingly she's blaming the olanzapine for the weight restoration and wants to stop taking it. She refused it last night but I have said she needs to take it until we see the psychiatrist on Tuesday in case suddenly stopping it makes her feel unwell.

I really appreciate you all talking me down though when I was in panic mode.

As for her weight, I think she probably was underweight or on the brink of before the ed. Looking back at photos she was very slim from the last years of primary onwards. Her sister was the same. I have her red book and will have a conversation with the psychiatrist.

@Weightlossworried so glad to hear it wasn't as bad as you were expecting!

As far as the olanzapine goes, I'm sure you know but the way they explained it to us was that it mostly is for quieting the eating disorder thoughts, with the added useful side effect of stimulating appetite a little bit (other meds like mirtazipine have a stronger weight gain effect I believe but are less well tolerated - DD was more or less instantly suicidal on mirtazipine, they took her off it after 3 days). Olanzapine doesn't in itself cause weight gain. DD is on three times the dose your DD is on, and while she did put on weight quite quickly for the first three weeks or so, it's now settled down to a much slower rate, which is in line with what you'd expect when eating about 500 calories a day more than normal.

Hopefully the psychiatrist can talk her out of that view, because I think it is really helpful for them.

Thanks @StressedANmum I did explain how the olanzapine works. She's agreed to give it another week which is good - I really do think it might be responsible for her being able to process the weight gain a bit better this time.

She ate ok yesterday, almost back to normal levels which is a huge relief.

Hi. It's a long time since I've posted on mumsnet... but I'm glad I've found this thread today. My younger DD (just turned 13) has been gradually reducing her food over the last 6 months which has got worse over the summer and after some false starts she has an appointment to see the ED team on Tuesday. Initially (about 4 weeks ago) I self referred and they declined to take her on saying it was anxiety linked to her autism but we've now been referred back as the end result is the same. She's currently eating a kefir yogurt for breakfast and a small evening meal cooked herself (boiled egg or tofu and veg). Maybe a go ahead slice as a snack. She fainted when she had bloods taken at the GP yesterday. The general advice from the ED team a few weeks ago was to provide all her meals but this resuled in complete refusal. She won't eat anything I've made or bought, even if she likes it. I'm letting her cook as I'm thinking it's better than nothing at all.
She's a great cook - this time last year she was happily cooking fantastic meals and I was more concerned about the amount of cream and cheese. She would bake when she was bored. I think part of this has been caused by her being labelled as the chef/baker in the family and it was all grandparents would talk to her about.
Is it likely she'll be hospitalised with the appointment on Tuesday? She's lost an additional 4kg in the last 2.5 weeks.

@Weightlossworried I'm sure that's a massive relief! It's great that she's able to calm down and return to baseline more easily now.

We're struggling with the start of the school year here. DD had originally wanted to try going back into school this year for sixth form, but the ED scuppered that. Then she was considering a couple of part time courses to try and get more GCSEs and maybe start an A level, but the medics are being very discouraging about it, so she's getting quite stressed about having nothing productive to do this yearvand getting even further behind her peers. We've tried to encourage her to prioritise recovery and doing some fun things, but it's really difficult when she doesn't really have many friends.

Hope everyone is having a decent bank holiday weekend.

I'm sorry you find yourself here @chillikat I really don't know if they'll hospitalise her but they may do based on her incredibly low intake of food. They'll probably also do her obs - heart rate, blood pressure. They may even refer for an ECG. They'll look at all that as well as her blood test results. On this board there's a thread of resources and it includes a link to what are called meeds guidelines which is how they assess risk in eating disorders. You might find that helpful.

There may well be links to how you tackle eating disorders in kids with autism, as a different approach may be needed.

I wish you all the best for Tuesday, keep talking to us. We'll do our best to help if we can.

@StressedANmum your poor Dd. Why are they discouraging her? If they're not actively stopping her based on health concerns, can she not just do it anyway? I get that recovery has to be a priority but a bit of hope and something else to focus on could help with recovery couldn't it?

Thanks@WeightlossworriedShe had a GP appointment yesterday at the request of the ED team. Her BP was low but didn't change on standing. She then fainted after getting bloods taken. I hoped that might frighten her into eating more yesterday but it seems not.

Hi @chillikat , welcome, sorry to hear about your DD
Sadly whilst fainting may have scared her, an ED will probably mean eating scares her more. Enjoying cooking and wanting to cook is also common, but the ED won't 'let' her make meals with the fat and carbs she needs
The suggested approach is calmy reassuring 3 meals and 3 snacks is what she needs, but that's easier said than done
Good luck for the appointment

Well done @Weightlossworried I think that’s testament to you and how you are handling things. I am really pleased things are going better. Great idea to say to speak to the psychiatrist. I’m really pleased you have this support. Let us know how it goes.

@chillikat I am glad you have found us. None of us ever thought we would be here, but you have found people who understand and genuinely want to help you. As frightening as Tuesday will be, it will hopefully be the start of you getting the support you need. Hospital is always a possibility to us all, but is it a last resort and they will try and keep her at home with you if medically your daughter is able to,

We all fear hospital, but for most of us it has been the best thing that could have happened in the circumstances. I for one couldn’t cope at home and I was so worried about my daughter, being in hospital made me feel better as she was being monitored. Please keep us updated and if you have any other questions we’re here. It’s lovely to see people who were in your position very recently, feeling strong enough to offer you advice. We’re a friendly bunch and we really do help each other xx

StressedANmum ·

Just skimming through posts again.
Cahms also did not want dd to attend school. Spoke to the school who absolutely agreed with dd to attend.
They said they had had disagreement wih camhs in the past regarding this.

It was so important for dd to attend, to have friends to talk to etc. Better than sitting at home stressing about food.

Obviously each young person is different.

@Anothersetback I agree. I think if they can show it’s medically dangerous for them to attend school, or if there is no way of knowing if they eat any anything, it’s understandable why not attending should be considered. They definitely take a cautious approach. Attending has many benefits and not attending for long periods seems to reallt set a lid of children back.

@chillikat Hi and sorry you also find yourself here. I hope this next appointment is more helpful. CAMHS is really frustrating as they seem to want to categorise exactly what the issue is to allocate you to the right place before offering any real help. And if they think it is anxiety based, they don’t seem to take it seriously at first, because they think this is possibly fixable without much intervention, so they send you away, telling you to get your child to eat.

I think this model is possibly based on the more likely behaviour of someone, who is NT rather than ND. The thing is, seriously restricting your intake causes anxiety, so if can be very chicken and egg. And the treatment for restricted eating is always the same: Getting your child to eat. The standard being 3 meals and 3 snacks regularly throughout the day, every 2-3 hours.

As @LurkyLurkyLou has said, your dd will be more afraid of eating than of fainting. Seriously restricting food creates changes to the brain and these changes drive anorexia.

It is very common to want to prepare all your own meals and cooking lots is a clear sign of an eating disorder. So if you trace this back you may actually realise your dd has been restricting far longer than you think. This was definitely the case with my dd. And you are right, if the only way to get your dd to eat, it is better to do this. From what you’ve said I also suspect that your dd will be omitting the fats and oils from her food at least.

@StressedANmum
I also agree with sending your dd back. It doesn’t sound as if she’s at medical risk when she’s been doing so well. Isolating her from peers is unlikely to help her to eat more. And can have the opposite effect. I really don’t understand why CAHMS would suggest punishing her for having worked so hard and put on a great deal of weight.

This weekend with the big family gathering has been pretty dreadful on the eating front. Dd came back from holiday with an upset stomach from holiday and has hardly eaten. She has been brittle and frosty at times, but all in all not too bad. Such a shame as she was in such a good mood when she came back and actually sort of ok with us. I even got a couple of messages with an x at the end.

As for the stomach issues, it’s like we are right back to where she was 18 months ago with the issues she had with stomach pain and stomach migraines. She’s even more adamant than before she can manage this and is choosing to eat next to nothing, but stuff like almost a punnet of strawberries today, which is going to perpetuate this. And hasn’t been taking supplements since things blew up in January. She has zero understanding of nutrition. And no desire to learn.

And she’s still telling family she’s moving out in a week. Her friend is supposed to be taking her to halls. I haven’t managed to tackle that one just yet. I’m firefighting right now and she’s told me more than once that I’m the problem. If I just left her to it, it would all be fine. When she was feeling really crappy earlier, I managed to give her a little hug and tell her the sorts of foods, that work well with an upset stomach. Not that it is likely to much of a difference.

And to top it all off, the key fob on my car isn’t working and we tried to get into the car by dismantling it and the alarm has been going off loads. We have the RAC coming out to check. It’s possibly the battery. But the fob plays up from time to time. It’s a known thing on my car. And dh has never believed me. He does now. And I told him how dangerous this is for a lone female. Penny drop moment for him. He’s unable to see things from anyone else’s perspective.