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?

Hi Feelingpositive - I don't know what type of therapy we will be doing. DD has only been having problems eating for a few weeks, and I think is not anything like as bad as your DD has been (although I do know what you mean about the look in her eyes and not seeing your DD there). The psychiatrist said that he was so glad we saw him when we did and that we hadn't left it any longer (I don't know how long we would have waited if we had not done this privately). He did say that much longer would have made things so very much more difficult.

DD has put on half a kilo since last Tuesday - which is about what the psych wanted - so we are on target. DD argues whenever we try to introduce more food, but we have noticed that after the initial fight she seems to accept what she must do. Her mood is definitely lifting and she is coping with school exams this week and hasn't really batted an eyelid.

I am hopeful that we are beating this but I know we will be on our guard for a long while to come.

How did you get on visiting school today, and did DD have the blood tests? You are being so incredibly strong and brave - I know you have no choice - but it is very hard especially being separated from DH. Hopefully the therapy will have a positive effect tomorrow, and of course you have more on Wednesday to think about. Let us know how it goes, I will be interested to hear what the therapists have to say. Keep posting...

Thanks for replying, I will keep posting. It's really helpful to hear how you and your DD are getting on.

My DD had the repeat blood tests. They told me that last week her blood sugars were 2.2, so she was hypoglycaemic and her urea and creatinine were elevated due to her being dehydrated.

I asked her why she wasn't drinking and she said that because she is so consumed with the food she just forgets to drink. I have tried to encourage drinking and she has definitely eaten more so hopefully, the results will be better this week.

I really think today that she is happier and more like herself than she has for a while. I think she must have been feeling awful esp with a blood sugar so low.

The school nurse was good and DD seems happy to go with her to pick up her meal and eat it in the nurses room. The nurse has done it before so hopefully that will work until she is able to eat on her own.

I feel its us against 'it' and 'it' absolutely is not going to win.

Anyway, she is to be weighed tomorrow, so hopefully, there will be some gain.

I look forward to hearing how you are getting on. I'm so pleased you have managed to catch it so early, it will hopefully mean a fast recovery and minimise the damage to her body. I don't think we will be able to relax for a while though do you?

I do hope you see some improvement today and that the session goes well, I am thinking of you both. It is good to read that you are literally living up to your name and feeling positive. Remember when you do feel a bit down that this is a battle that you are going to win, there is no alternative. Your DD sounds as if she wants to beat it also, so you will be a formidable force .

Both sessions went well, she had put on 350g and her blood sugar levels had improved. Her urea and creatinine are still raised so they are talking to the renal people to discuss implications of that.

However, the fact that her blood sugar has gone up and she's put on weight means that she has pulled right back on her food and we are really struggling. The psychiatrist says we have to feed her, but at the end of the day, if she refuses it's impossible to get her to do it. She will be hospitalised if she loses much more weight or they will pull her out of school, both of which we are desperate not to happen.

So, I thought we were doing well, but now feel its sliding. I'm supposed to be away this weekend, staying with my sister and going to the Chelsea Flower show. I am desperate to go, but feel bad about it.

Her dad is just as able to cope as I am and I feel I need the break, but is it mad to go? I think I will, but probably feel very guiltly!

It is really difficult. Did the therapists give you any advice on how to go about this? I know that my friend was told to put food on the plate that she expected her DD to eat. Nothing was to be left and she had to sit with her DD until it was eaten (even if it took a few hours)!! I don't know if that's a good idea for everyone but it worked for them in the end. I understand that your DD now feels scared because she has put on weight. My DD leapt off the scales in horror at putting on any weight but is much more accepting now.

We were told that there would be good days and bad days, and we have had a couple of bad days with DD seeming very down. She does seem in a better frame of mind tonight but the important thing is that she is eating.

I think you should go away, you deserve a break, and as you say, your husband can cope. Indeed it will maybe recharge your batteries, you still have to have a bit of a life and should not feel guilty about it (although that is easier said than done). We do seem to carry all the guilt don't we?

I think one thing that worked in our favour also is that DD has not shown any interest in working out calorie content of foods. She has her own ideas about what is acceptable but hasn't really studied the subject. Therefore she is happy to munch sultanas etc not realising how high in calories they actually are. Combined with a tiny yogurt they can soon add up to a good snack. Would your DD consider anything like this?

Thanks twentyoneagain, the therapists just said she has to eat! And we were to persuade her, they said not to leave it more than half an hour and to then go back to it. However, she is totally adamant. I know that if she is admitted thats what the nurses would do, I don't think they do 'no'.

She won't snack at all, that is one of her 'rules', and certainly not dairy foods. They are banned as are any fat at all. I think that we just have to try our best and if she has lost weight she has lost weight.

She has been referred to the renal team at the childrens hospital as her kidney function tests aren't as good as they could be.

I'm worried about my ds who is 12. He is very worried and offering suggestions about how to help her eat, some of them very good! He is trying to counsel her himself which I have tried to stop as it is so exhausting and not his responsibility. Poor thing, he is definitely coming with us to the family therapy!

I'm so glad your dd is eating, it is such a relief isn't it. I hope she is feeling more positive and better about herself.

To be honest DD is eating but doesn't feel particularly good about herself. I don't think she has for a long time and I suppose that is where the problem started. We are doing everything we can to help her but it is difficult to deal with.

We will be seeing the psychiatrist a week on Tuesday and we will have to see what he says. It is a lot harder than I imagined to put on a pound a week and it just shows how much they do in fact need to eat. DD is maintaining her weight during the week and puts a bit more on over the weekend. It happened the same way last week and the weight was put on over the weekend when she was at home eating what we gave her rather than chosing at school. We do know that she is eating at school but not as much as we would have her eat at home.

I hope you have gone to stay with your sister this weekend, and that you manage to get a much needed break. Take care of yourself your DD needs you.

Hi twentyoneagain

I haven't gone to my sisters, DD was admitted into the childrens hospital on Friday night. Since Wednesday she had spiralled really and with her kidney function not quite right we took her to A&E as she was becoming more and more tormented really.

They have been lovely, she is also bradycardic with a pulse of about 45 so she is having daily bloods, vitamins, phosphate supps and help with refeeding. TBH, it is a relief really, the last couple of weeks have been hell and were getting worse and worse. She is more relaxed and it's really nice to be sharing the burden of refeeding. They are going to monitor her until Tuesday and make a decision then. Her creatinine levels need to start falling first, they rose again today.

I didn't mean to be glib about your DD feeling better about herself, I'm sure she doesn't and that will take more time and help I'm sure. I think I wrote that quickly whilst having my own nervous breakdown.

I'm feeling much better, and almost don't want her home yet until we know that she won't spiral quickly again. She also wants to stay until she feels more stable.

I know what you mean about trying to put on the weight and how much they need to eat. It is a lot more than you imagine isn't it. Just goes to show that even eating a bit just isn't anywhere near enough.

Good luck next week and I hope you continue to make progress with her eating. At least then, she will be hopefully thinking more clearly in order to try and find out why she is doing it.

Sorry this is a bit rushed, I've just got in.

Thankyou Pixie, that's very kind and means a lot. You are not gatecrashing, its an open thread!

Feelingpositive - I am so sorry it has come to this, but I totally understand how you are feeling right now. Your DD is now in the right place and I can relate to the relief of being able to lean on someone else and let them take some of the responsibility for getting her well.

I know you weren't being glib about DD feeling better, I certainly didn't take it the wrong way.

Don't forget - my friend's daughter was in hospital last year - and now is eating normally and feeling so very much better. Hang on in there, you are getting the help you need. Let us know how things are, we are thinking about you..

Ahh, I typed out a long message and then the stupid computer lost it all.

She is improving in hospital, she is having a scan of her kidneys but they think her high levels are just dehydration.

Mentally, she is a lot more relaxed than she was last week and we have CHARTS. We have established that she needs charts to do anything.

She can't just drink x amount a day even though she knows her kidneys are struggling, but the dietician has written on her chart when to drink 250mls at a time and she drinks!

She also can only eat what is on her chart. We are just struggling with one snack which is always a step too far but she has had the ng tube wheeled up to her bed twice and both times she has eaten last minute. I'm wanting to take one home and hang it in the kitchen!

She will probably be out this weekend and we are spending next week sticking to the chart rigidly so that we can settle into some routine.

She is still tiny, a whole kilo lighter than last week but she herself is more chirpy and relaxed.

Anyone who comes to see us from CAMHS or docs tells us what a long road ahead we have, its sooo depressing because I would like it sorted by next week. So your post about your friends daughter who is better a year later is really reassuring.

Hope your dd is continuing to put on weight and you managed to have a good half term.

Feelingpositive - so sorry I haven't been online for a while but things have been a bit hectic. We have been making good progress but it has been incredibly hard to put on a pound per week. Amazing how quickly they lose weight.

DD is now up to 3000calories per day but is burning it up so quickly. This has been explained by the psychiatrist we saw today. I have become quite expert in putting calories into meals without making them too large. DD's mood is definitely better than it was but she did go through a very dark time last week and the week before. She has done the lightning process (which is normally associated with chronic fatigue - something she suffered from two years ago), and this has helped her (I think). It is not a treatment for eating disorder but she has managed to use it now to help her deal with some other issues.

How is your DD and is she out of hospital yet? Do keep in mind the fact that she will get over this and let me know how she is.

Sorry this is a bit rushed, I will try to spend more time tomorrow and post again.

Hi, another quick post.

It is so incredibly hard isn't it. 3000 calories is a huge amount to try and feed someone, especially when they are so reluctant. We are 2500 and not managing that to be honest.

She is out of hospital and we are on a trial run at home to see if we can keep her out of the teenage eating disorders unit. I would like to because I think it will be full of older very good anorexics with lots to teach, my DD is still very naive about it all. However, at least twice a day, I feel so helpless I would dearly love to drop her off and let someone else do it.

She is desperate not to put anymore weight on than a pound a week, so I dread weigh ins in case she's put more on.

We're hanging on in there, we came out Sunday and have already dropped morning snack and really struggle with evening one. We really have until next Tuesday when we go and look round eating dis unit to see if we can manage.

I do hope so but then last night when battling with evening snack, my DS (12) is weeping beside me I think maybe it would be better.

It would mean her missing all summer hols etc though because they keep them in there for weeks. My DD is so underweight that she wouldn't even be able to attend their inhouse school let alone do anything else. My heart weeps for her, she is so upset about it.

I'm sorry your DD has felt so low, it is the most cruel illness and everyone keeps telling me how we will always have it with us, even when things are better. Lovely!

And I am sick of the number of people who say, tell her to eat or she will make herself ill! Really? We hadn't thought of that!

That is interesting about the lightning process, I don't know anything about it but I will have a look. Your poor dd, having this after overcoming chronic fatigue. It certainly doesn't seem fair.

I do agree with you. It affects the whole family in such a negative way and makes you all feel so bad. I know that DD's black moods seemed to just drag everyone down and I understand the longing to put her back into the unit. Feel so sad for your poor DS and hope he isn't too badly affected by it all.

I do think that our DDs will not remember all of this though, I spoke to my DD about how she laid on the settee in a foetal position, shivering and couldn't eat one rich tea biscuit. She couldn't remember it at all, so maybe as the weight goes back on the neural pathways start to repair and some of the ugly thoughts disappear. Don't know what anyone else thinks about that - maybe some others with experience could let me know?

DD is in a better state at the moment. Her behaviour is more positive and upbeat and she is coping with gcse modules this week - although I know she has not done nearly enough revision. Hopefully she can make up for it in the future.

Is it really true that anorexia never goes away? That is a truly scary thought, especially as we will be pretty powerless to insist on the eating later on .

Try to stay strong, and I hope your husband is giving some support. I imagine it is hard for you to get out on your own, but if you do get the chance you should try. Keep posting...

Thank you Pixie - it is good to hear from you and what you say makes sense. I am glad you are over your problems .

www.feast-ed.org/understandingeds/treatingeatingdisorders.html. This website has some good advice especially wrt meals etc. Have you discovered fortified milk yet? Just add two ounces of skimmed milk powder to one pint of full cream milk - really helps add on calories especially when mixed into a build up drink (found that one on a hospital website).

Pixie, you haven't rambled on! It's interesting hearing your views and reassurance.

twentyoneagain, thanks for the website reference. We're struggling to get a balance between putting on weight and too much. She has just been weighed and has put on 300g in 3 days. She now feels that it is on target to be more than the 500g a week she knows she has to do so is going to struggle with her snacks. We have just stood in the foyer with her nurse, who has insisted she has 3 snacks a day to which she nods away. We walk out and she is now refusing potentially all of them. I could scream!

They keep saying the parents are the resource who help the child put on weight. But if it's an outright no what do you do?

Does you DD ever just say no, with complete intransigence.

No - DD has never flatly refused to eat something although there were times a few weeks ago when she was heading that way. I'm not sure what the answer is here. Do you weigh her every day and are you keeping a record of daily calories? Can the nurses at the clinic give you any advice on this?

I know that my friend simply sat with her daughter until the food was eaten and there were times when it took hours! Apparantly she also got used to cooking extra portions to replace those that were thrown across the kitchen .

It seems that it gets harder to put the weight on as time goes by so, remember that the increase will possibly slow down.

We don't weigh her everyday, they just want a weekly weight and I have hidden the scales!
I suppose so that she doesn't become obsessed. CAMHS just say, be firm but kind, which is all very well but doesn't always work!

Interestingly, we've just been to the supermarket and saw an adult with an obvious eating disorder. She was the worst I have ever seen and how she was walking I don't know. My DD noticed her first and was very interested. I asked her how she felt, she said that two weeks ago she would have been jealous because she isn't allowed to get that thin, but now she isn't jealous and wouldn't want to be like her. So, a small positive, although it is utterly terrifying that these two people, one being my dd have the same illness.

I feel more positive now, due to my dd mainly, she is such a positive person, she always manages to give me hope. She has had a good lunch, as have I. I sit with her and eat the same, I feel so full!

So glad you are feeling more positive . Isn't it hard to eat as much as them? It really does make you aware of how difficult it must be for our DDs.

DD has gone to spend the night at a friend's house watching movies and is going shopping tomorrow - all the things you want them to be doing. I am not too sure that she will eat well tomorrow but am prepared to overlook it as I think it is important for her to be able to enjoy life and to feel as normal as possible. We will get her back on track afterwards.

The psych doesn't want to see her for eight weeks so that really shows that she is not anywhere near the danger zone that your DD is in. It almost makes me feel a bit guilty - knowing how much you have been going through - and I hope that things are still ok for you. Is DD with you or her Dad this week end? I hope that wherever she is, she continues to make good progress.

Well, we went to visit the adolescent unit yesterday as planned and they strongly advised that DD should be admitted. They think that she is too anorexic for us to manage at home. They offer a very intensive about 3 month programme that covers everything from self esteem building, family therapy, individual therapy, support groups etc.

They want her to put on 1kg (!) a week which is music to my ears but totally impossible for me to do at home.

So, I feel slightly relieved that I no longer have to do the refeeding, pleased that she will have all this amazing support and it promises her a much better recovery and totally devastated that she is going there for several months and I will miss her beyond belief.

We can visit in the evenings so I'm sure we will settle into a routine, although as ever I wonder how to fit it all in.

And don't feel guilty about anything, I'm really pleased that although it is a tough battle your DD is managing to cope and put on weight. Hopefully, she will avoid all of this.

And, having spent years in counselling/therapy with exH trying to sort out marriage, I now have months of endless appts/ therapy with him again! I appreciate its about DD but yesterday I was beginning to want to kill him again, life can be cruel sometimes!