Eating disorders - advice please

[feelingpositivemum]

My DD has been referred to CAMHS this morning as she is becoming more and more controlling over her food, she is losing weight and sounding more and more troubled about her diet.

She is not restricting her food to lose weight, she has always been skinny, but to gain some control in her life. (Her words)

I split up from her father last September and it started from then really. It's been a very slow and subtle change so we've only just really noticed it's becoming a problem.

She is really receptive to help, she wants to talk and she 'talks the talk' but as she says, she knows she needs to eat but her head won't let her.

I am utterly terrified, she's such a gorgeous, sensible, level headed girl and to hear her talk she sounds so different.

Sorry for long post, i was just trying to tap into some experts here. Do I try and encourage her to eat more, how far do I push it, do I let her take complete control or do I keep control of her diet if only to keep her weight up.

She wants control but if that is not eating enough do I take over?

It's such a horrible horrible time, and bewildering too.

Onlinebookworm I understand what you mean about adding calories and DD finding out. We don't want her to deceive us but on the other hand we are considering deceiving her. I don't think we have done this too much to date and tbh DD's eating is better than it was. The biggest challenge is trying to establish what the underlying problem is. People don't just stop eating for no reason. DD had problems with some of the other girls at school earlier this year and it did make her anxious and worried. Those issues have gone away but she seems to have lost her confidence now and seems very withdrawn at times.

It is so hard to deal with, there is nothing worse than seeing your child suffer in any way. We love her dearly and will do anything to help her, it is just a case of knowing how to help. We are seeing the GP tomorrow and are hoping for a referral so that we can give her more help. Will let you know how that goes.

Feelingpositive I hope your DD's friends can come over at the weekend it might do her good and will perhaps give you a bit of respite. I hope she felt better by the time she went to school this morning and that you are not feeling too upset by it all. Take care of yourself - you have had an especially hard time recently and if you can just get out of the house for a while do so. Our DDs will get through this with our help and hopefully will come out the other end stronger and wiser.

feelingpositive it sounds as though your DD is so attached to you, that she's very able to communicate with you. Which, whereas exhausting and stressful for you, will almost certainly help. She sounds a lovely girl.

Maybe the going to bed early is a sign that she's not feeling well? As I said on the other thread, anorexia can cause real physical illness.

twentyoneagain (love the name - wish I was too) I agree with you about finding the underlying problem being the key. I hope the GP is kind and helps, and that you can get a quick, smooth referral.

part of my problem was also i felt embarrissed about eating i had 2 brothers who were pigs and worried that was what i looked like when i ate. And also when it was all out in the open i was worried people were judging the amount i ate and what i did and didnt eat.

my mum had a snack box that was just for me it stayed in my room and my mum kept it full. Noone else knew what or when i ate and my mum never commented on it.

I'm so sorry, i hope some of this is helping, its very difficult to talk about as it was such a dark time in my life and i still have issues. Eg i cant go to new restaruants and if we do, the first, second, third time its to get a drink and get a feel of the place, not to eat. I cant eat in a place i'm not 100% relaxed in.

And if anyone comments on food i'm eating, even if its just, that looks nice, i cant eat any more, its like a mental block. And its stupid and annoying.

The problems i had and have didnt just crop up over night, it started for the control reasons but then became habbit almost like an addiction and i cant stop, even as a rational thinking adult i will never be rid of it, but you can learn new habbits and what to do when you wnat to eat but cant admit it.

Like i said i really hope this helps even a little bit

It does really help, addicted, its very interesting to hear your point of view. It's so difficult to separate the actual eating with how it's actually nothing to do with eating, if you see what I mean. All the background issues going on as well.

And frightening how it can gain such a hold on you for so many years, even when you are rational adult as you say.

I've realised today that we haven't talked anywhere near enough about the separation, I've been too busy trying to sort new house out etc. I'm really going to concentrate over the next however long to talk about their feelings, how the separation has affected them etc. I've tried to appear so chirpy and to be honest have been so much more relaxed myself now I'm in a better place that they haven't been able to express their sadness etc very easily.

I think I've made them feel like they should be feeling better when in fact they are probably feeling a lot worse.

There are definitely control issues with my exH and food that I will have to raise and discuss with them. Perhaps just acknowledging these will help them.

I wondered if because of this control over mealtimes my dd has just removed herself from it by switching off, it doesn't bother her anymore because she doesn't engage with it - or eating.

I like the snack box idea, I think I will suggest that. I know she does eat bits of chocolate, just 2 squares a day.

Twentyoneagain, good luck with the GP and I hope you get referred quickly. I'm wondering how long it takes and hope its quick! Let us know how you get on.

Addicted, online and everyone else thankyou so much for the helpful comments. It does make a difference seeing things from another perspective.

One thing that is so lucky is that my two DDs get on very well. DD1 supports DD2 incredibly well and makes her laugh which is so very important.

Feelingpositive - I understand what you mean, you are feeling better because of the separation but obviously the DCs are not, and it will surely help to talk about it with them.

What happens when your DD sees her dad, does she still have meals with him and is he still trying to control?

Hi twentyoneagain, that's lovely that your DD's get on so well and she can be supportive. How lovely.

I have had a very long chat with DD this evening, and she seems quite ok about the separation. She and my DS1 both said they feel fine about it now, and assure me they aren't sad.

Anyway, long long talks about putting weight on, she absolutely can't imagine ever being able to put weight on. she understands all the rationale but just can't. She is hoping CAMHS will be able to help but can't see how they will be able to.

She has agreed to my friend doing reflexology, she really feels tense and wants to find a way to relax.

She is supposed to be running 800m on Thursday and high jump. She is 36 kg and 159 cm so I've calculated her BMI on the internet and she's 14.2, under the 1st percentile for her age. I tried to bargain with her, if she had margarine on her toast, she could do it. Then I was pathetic and gave in, I couldn't do it. Couldn't look at her sad face, and I know that it is good for her self esteem.

I can't quite believe we are here. I can't believe that she is so tiny, so thin and it's snuck up on us. I'm so angry at 'it' and for invading her.

And I'm not sure where to go from here, it's so exhausting. And utterly terrifying.

Sorry, twentyoneagain, I ignored your question, got carried away with my self pity.

She does eat meals with her Dad, he is so controlling but also keen to help. He has no insight or desire to recognise his control, so it is so difficult to cope with. I want to scream at him to lay off the stupid controlling games he plays, but I have in the past and he refuses to acknowledge. If he accepts any wrongdoing he wants me to accept something too, to make it fair. All far too complicated. Anyway, DD feels that it isn't an issue, she can cope with it, it's far more to do with puberty she feels.

Hopefully, CAMHs will be better placed to work it all out.

Hi feelingpositive - how are things now?

We saw the GP who was lovely with DD but very firm as well. He stressed that she was underweight and needed to gain around ten pounds, which didn't freak her out as much as I would have thought. We have been referred to a child psychiatrist who specializes in eating disorders and will be doing this privately as the wait is far too long.

Since the GP visit DD seems to be a lot better and is eating what we give her with a lot less fuss. She is also much more cheerful and is back at school - having been off Monday to Wednesday. Maybe - just maybe - we have nipped this in the bud, I know we were very lucky to have been given a lot of information by my friend. Even so, we are aware that something like this doesn't just happen, there has to be a reason and so we do need to be on guard still - and in the future.

Hope you are still around to post.

Hi twentyoneagain, I'm glad that your GP visit went well and you've been referred.

I think we will also go privately if the waiting list is too long as I feel we need to get going, she is at the moment keen for help and she is not wanting to put weight on in case they say she is better and discharge her before helping.

She is struggling with her eating, she will eat some but is always trying to reduce it and won't touch some things. She is adamant she doesn't want to put weight on, and thinks she's eating enough to get by. It is definitely puberty related as she brings this up everytime.

I keep trying to remember it isn't her, its the illness but it is sooo tempting sometimes to say, Just eat it! Especially when she complains of being cold, or tired, you want to say of course you are, you're stick thin. God its soooo hard. And I'm missing the old DD, who was so positive, chatty, fun and good company.

She is getting quieter and quieter, and more tense. She is very angry with 'it', she hates the way it has taken control, and won't let her eat what she wants.

I'm hoping her insight and keenness for help will be positive, although she is also adamant she doesn't want to put weight on.

Good luck with the psychiatrist, it will be interesting to hear how your DD gets on. I think I will push this week for something.

Feelingpositive - it is just so very sad to see them like that isn't it? That is exactly how my DD was and there are still several things that she refuses to eat now (which previously she would).

It has to be a good thing that your DD talks about it with you and that she agrees she needs help. Our DD agreed this also, and it must be a huge hurdle if they don't think they need it.

Our appointment is for Tuesday so I will let you know how we get on, and hope we get some good advice and help. DH phoned the consultant's secretary and managed to get a really quick appointment. Do push for some early help if you can - I know it is so much more difficult for you on your own - but we have to do everything we can.

It will get better, my friend's daughter had to be hospitalized and was very ill, but she is now back at school and eats well. In case you are wondering the two girls do not know each other and so DD was not influenced by the other girl.

Keep posting, it helps to get it off your chest sometimes .

That's so reassuring to hear your friends daughter is so much better, they can do it can't they?

Good luck on Tuesday, you have inspired me to push really hard for some help, I will do some ringing tomorrow.

She is so sweet, she is trying to think of a new hobby to distract her, as she feels better when she hasn't time to think.

She describes how, if she has eaten something she feels she shouldn't it replays in her mind all evening, how she ate it, even down to every last crumb, over and over, she says it's torture, and so it becomes so much easier not to bother. It sounds horrible, and as she says, torture.

She is having reflexology on Tuesday, so it will be interesting to see if that has any relaxing effects.

I think it is a huge hurdle that they want help, I think that must be one of the hardest things, to see your DC suffering but refusing any intervention.

Good luck! x

We were given an appointment with CAMHs - 1st June for an assessment to be then referred for treatment to start July! Agh..

I was a bit terse with them and was looking into alternatives when they rang back and offered us 1.45 Wednesday to see the Consultant - if we were really worried her weight had dropped dramatically. I took it, saying that it was more about her wanting help rather than weight. In 6 weeks she may be that much worse. So, thank God we've an appointment, i only hope they are not annoyed with me for pushing.Or do I care.

Good luck tomorrow.

Feelingpositive - that is so good. Hopefully we will both have some good news to report this week.

Do not feel guilty about pushing for an appointment, you did the right thing. Your DD's health is of paramount importance. We can both look ahead to getting the right treatment and hopefully seeing some improvements. I will let you know how it goes.

Well - a very good appointment with a child and adolescant psychiatrist. I will list all the things I can remember.

He did speak to DD on her own for a good half hour and then invited DH and myself in.
He explained the dangers very gently but very firmly. DD has to put on one pound per week and is to go back in two weeks. It is important not to put weight on too quickly as there are dangers in doing that.

DD is to have an ECG this week as the body uses up the muscles for energy and obviously the heart is a muscle. She is to do no sport until the ECG results are known. She is also to have blood tests to find any deficiencies.

Has to drink plenty of milk as it is important to get calcium and phosphates into the body.

Counselling is not appropriate at this stage, she simply has to put weight on first. Losing weight as she has done will damage the neuro transmittors in the brain and she will not be able to respond as he would like her to. The therapy will come later.

She is to be weighed every day so that we can moniter the increase properly.

That's about it in a nutshell. DD was very quiet and withdrawn last night - and was not happy with her evening meal - but this morning seems a lot more accepting. We are keeping a count of calories and are concentrating on calorie intake as opposed to amounts on plates. Lots of pasta this week etc. Even something like those petits filous yoghurts have just over 100 cals in a tiny pot. I suspect the whole family will put on weight over the next few weeks!

There will be other things to tell you but I have to leave in a hurry now and can't get back on today. I hope you have a good day Positive and that DD can deal with the stresses today. I will be thinking of you.

Thank you so much for your update, I am trying to work from home but feel physically sick.

Yours sounds very positive and I'm hoping for such defined guidelines. I think I am more scared that we will come away with not much to go on, and no definition of help if you see what I mean.

Will check in later to say how we got on.

Well, yesterday went well if a bit overwhelming.

She is anorexic and we are to immediately start increasing her food intake. She had blood tests taken and has been stopped from all sport - much to her disgust.

They wanted to lend me the book you recommended - about teens and eating disorders so were surprised I was already half way through it!

She is to start counselling and weighing next Tuesday and we start family therapy (oh joy, me, ExH and the DC's) next Wednesday. I did begin to wonder how on earth I had got here.

DD is wanting to get better but emotional about eating more, very reluctant and very, very bargaining. It's exhausting and I'm not sure how much improvement we will make in a week. Every meal is a complete battle of negotiations.
Can I ask, what you are doing about school. The psychiatrist wants me to go in every day to monitor her lunch and she has to eat a snack with her tutor at break time. I have spoken to the school and she is to have lunch with her tutor for the moment and to review, (she's going to be livid). They wanted her friends to do it but I said it wasn't fair on them as she is so difficult to convince.

We shall see how we get on - it's going to be hard work I think.

How are you getting on?

I wanted to add something to the thread having, through one route or another, had quite some experience with people with anorexia. It is going to be very hard work, I'm afraid, but at least you seem well prepared and supported.

It's very good that you've got medical support and therapy sessions, for example. Good too that the school are up to speed. I would suggest that her friends are included rather than given responsibility. Friends can be very helpful but if they don't know the situation and inadvertently put their foot in it, can easily put treatment back months.

The one piece of advice I'd pass on is not to enter in negotiations at meal-times. It's a tough call when it's your own child but there can't be any back and forth bargaining. If you struggle with this one then pass the buck to the doctors and therapists. You can only obey orders, as it were. Any concessions or changes she has to work out with them, not you. The therapists will work on gaining agreement from your daughter so that she feels a degree of control in her own progress. So remind her 'you agreed to do this'... again, it shifts the responsibility back to her.

And the other nugget I'd pass on is how important food is now. I know it sounds like stating the bloody obvious but malnutrition is a big part of the ED vicious circle. The brain stops functioning normally and the irrational becomes rational. I know so many people who talk about a 'fog lifting' once they got their nutrition up to a certain level.... they can think more clearly, they feel energised, they regain their rationality. It doesn't mean they are cured but if you're dealing with a rational patient they stand less in the way of their own recovery.

Thank you Chil1234, I am reading your advice just after I have sent a very upset DD over the her dads for tea. She feels disgusting as she has eaten so much more today than normal (sadly not anywhere near what they told us she had to eat).

She is continuously bargaining and it is so hard to know what to say. I know we have to be cruel to be kind but its very hard as you know.

I have just texted your advice to her dad who will be struggling the same, it's very useful so thanks.

It's difficult with the school too, they have done very well and her tutor sat with her for lunch, but she didn't have pudding and he obviously didn't feel brave enough to insist, even though I had said he must. I'll have to monitor that and ask the doctor next week.

I feel more positive, it's lovely to have the support around us now and know we have someone to see every week.

We found a week or so ago that we were being drawn into negotiating with DD, and very quickly we found it was on DD's terms. We now allow no negotiating, she is to eat in order to put on one pound per week as the psychiatrist advised and we have so far found it to be working, (I know it is early days).

School are monitoring from a distance and letting us know what she is eating. We are quite lucky here as DD is adamant that she does not want them involved. We have therefore told her that as long as she eats lunch and puts on weight as she should - then we will leave it. If, however, she doesn't eat, then we will involve school and her eating will be supervised. This is something she really doesn't want and so I think it is working in our favour at the moment.

I am so glad you are now getting the help you need Positive. It is really hard to stay firm at times and they make you feel as though you are being really cruel to them, when all you want is to make them well again. Remember that your DD's perception of things is completely distorted at the moment, and that this isn't really her doing the talking , it is the illness. One day she will be back to her old self, and you have to hang on to that thought.

Thankyou Chil1234, it does help when others post with advice.

Continuing with the struggle, it is incredibly hard work and I don't think she will have put any weight on this week.

Her tutor wasn't available to watch her eat her snacks yesterday so she didn't eat either. She said she couldn't. They struggled to eat with her at lunch also, but they have arranged for her to eat with the school nurse on Monday, I am going in to see her to emphasise the importance and urgency of this.

We have to repeat some blood tests on Monday as her U&E's aren't right and her blood sugar is very low, even though she had had a decent breakfast before they were taken.

I went with her to a school play her year had put on and wanted to weep my way through it. They all look sooo healthy and fit and twice the size of my DD.

Anyway, fed up this morning! Must go out in the sun and get some positive vibes.

It's just her and me this weekend, so an intense weekend a head.

Hope you are having some success, twentyoneagain

'ahead', I can still spell I think!

This may help and make more sense the books www.lpch.org/clinicalSpecialtiesServices/ClinicalSpecialties/EatingDisorders/week.html.

Hope it works I'm not too good with links.

Will be back on later to posst properly.

Will be thinking of you this weekend. Be strong.

Sorry it looks like I've been drinking this morning !!!

Hi twentyoneagain, how was your weekend?

Ours was up and down. Sometimes I think we are doing really well, then other times it feels like a brick wall.

On Saturday night, when she was refusing half a glass of milk and was in such torment, I wanted to go and find my desert island again. I'm not sure how you do it for months and months.

In between meals she is her normal self, a bit quiet perhaps but when food is involved the other self arrives, she says so herself, its as if she's been taken over and the real her has disappeared. She says she does disappear and the anorexia inhabits her whole brain. She has this 'dead' look in her eyes and it's quite scary really, I can't see her in there.

Then after the meal is over, she arrives back. She says she is not drinking because the thoughts of food so overwhelm her that she forgets about drink. We have been encouraging her to drink to try and improve her blood results on Monday.

I am going into school tomorrow to discuss eating in the day. I don't think she can be trusted to manage it herself, she hides her food if she thinks I'm not looking and can't eat her snack unless with someone.

Anyway, onwards and upwards, she is definitely eating more than she was and hopefully we will see some improvement on Tuesday weigh in.

Hope you are all ok, and feeling positive.

I watched Jim Lock on the clip you recommended, it was useful wasn't it. I'm glad we are following the Maudsley - family therapy route. Is that what you are doing too?

And all I can say is I'm glad we don't live in France, can't visit or phone for at least a month?! We would have to run away, I feel!