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DD and eating disorder, please help

(18 Posts)
FloresCircumdati Wed 16-Oct-13 16:20:11

Mumorandom flowers

FloresCircumdati Wed 16-Oct-13 16:19:46

Thank you Greengap13 I'm listening to it now! The anorexia article is 20 minutes in

here is a transcript (with many of the 'and's removed so that it is easier to follow!

Mark Porter (presenter):
At least 1.5 million people in the UK are thought to have some degree of eating disorder. Contrary to the stereotypical image, they are not all teenage girls and young women, although these do account for a large proportion of those with the most severe form: anorexia nervosa.
Despite being both common and serious, anorexia remains poorly understood and surrounded by myth and prejudice. It’s only natural, for instance, for desperate parents to worry that something they’ve done is partly to blame. But, is there any evidence to support this?
Robert Spooner lost his daughter Melanie (who was a doctor) in 2011, after a 17 year battle with anorexia which started in her early teens.
Robert Spooner:
For me, if you don’t put fuel into the car tank, the engine stops and I said those words to Mel with tears in my eyes. I came across ..what we learned to live with which was a complete wall: the face locked up, her face locked up, there was a battle ground for a long time to come.

Bryan Lask:
My name is Brian Lask, emeritus professor in Child and Adolescent Psychiatry at the University of London.
For so long, parents have been blamed for bringing on anorexia in their children. It’s just nothing like that simple. In fact there is no evidence whatsoever that parents can create anorexia nervosa, even in a genetically vulnerable child. That evidence has never been shown. We believe we have got a much better understanding now and the way we see it is that there is a particular structure in the brain which is called the insula. The insula is a bit like Clapham Junction. It’s a major part of the network, and, [of] the messages that go around the brain, many if not most travel through the insula.
So, if the insula’s not working properly (which is what we believe is the case in anorexia) then messages get distorted or misrouted or lost en route. It has a knock on effect around the brain and it means that many different structures in the brain are not working properly as a result.
To give you just a few examples of that, one structure that is not working properly is the frontal lobe (that’s the thinking, planning, deciding part of the brain). It means that thinking is much more difficult when you have anorexia because it’s swamped by feelings. The feelings come up from a different part of the brain (the feeling brain going up to the thinking brain). Thus people with anorexia are desperately anxious.
In addition, there’s another part of the brain called the basal ganglia which is responsible for drive, for perfectionism, for exercise, for compulsion, and that is over firing, it’s overactive, because the insula which would normally modulate it or regulate it is not doing so.
So we now have very high anxiety, we have obsessional drive; we have inability to think properly.
And then another part of the brain that’s not working because the insulin is not working properly is the part of the brain that deals with visual special images. That’s probably why people have such a distorted body image in anorexia, they see themselves as fat when actually they are extremely thin and all that we attribute to the failure of the insula.

One of the myths that still persists is this idea that people with anorexia choose to go on a diet, choose to remain the way they are, choose to have all these features and that’s just as nonsensical as saying someone with pneumonia chooses to have a fever, to be short of breath, to cough and to be in pain when they breathe! None of that’s a choice and none of what happens in anorexia is a choice, so trying to convince someone with anorexia that they are thin, not fat; that they should eat; all those things; it doesn’t work because it’s like trying to tell someone with pneumonia, ‘Don’t cough’ or ‘Don’t have a fever’. Their illness is a very manipulative and controlling illness but they are not manipulative or controlling.
Robert Spooner:
By the time she [Mel] was 18 and leaving school, my wife had worked quite a miracle with Mel. Mel looked absolutely fantastic. And then off she went to Cambridge where she was driven, and one of the things about these people is they’re perfectionists. She was..
(Mark Porter: Studying Medicine)
Robert Spooner:
Studying Medicine and..well, she didn’t believe in herself totally. She also felt pressured by the university itself. There was one of her supervisors who told her she wouldn’t pass, and that was the year that she came first. And that was a bit of a nail in a bit of a coffin for Mel because a driven person was even more driven. And part of the dealing with it was self-denial of food. This was where she could…there was a buzz from not eating and she was away from home.
Bryan Lask:
Most people with anorexia are perfectionists, and are therefore compulsively driven to achieve at a very high level, they work extra hard to do so and that shows through in school work. It also shows through in the illness because they are desperate to achieve the lowest possible weight and starve themselves as much as necessary to do so. When people starve, they deprive themselves of essential nutrients, one of which allows us to develop the neurotransmitter, noradrenalin. Noradrenalin we do need for all sorts of things but one of the things is makes us anxious. If we get too much, we get very anxious. So, if we starve ourselves, we lose the nutrients that give us noradrenalin, our noradrenalin levels drop and we feel less anxious. Now, people who have very high levels of anxiety find themselves less anxious when they’re not eating therefore that reinforces the pattern of not eating. Then nice, kind people like me come along and make these people eat and they get anxious again, and they don’t eat and they get into a cycle. It is one of the reasons why anorexia is so difficult to treat. It’s one of the very few illnesses where people don’t want the treatment because they actually feel better with the illness than without it.
Robert Spooner:
All along the way, she had problems getting help, and accepting help. Bear in mind she was an extremely clever person, and may even have been cleverer than those who were trying to treat her. So she had the answers to things that were said, like,
‘There’s a problem with your blood test, potassium level’s low’
‘No, it’s not! This is the range and this is the tolerance, and it’s within the range’
Mark Porter: well, why wouldn’t she accept the help? She was very bright, she was a doctor, and she must have known exactly what was going on.
Robert Spooner:
She knew absolutely what was going on, it wasn’t where she wanted to be. We spoke about what was ‘Mel’ and there was a person called ‘Anna’, the anorexia. Anna was so often so much more powerful in her mind and just wouldn’t let her eat and drove her with an addiction. So she wanted to be better, she wanted to have a normal life, she knew what the effects were on her body and she was already starting to have osteoporosis, but she just physically couldn’t make herself eat. It just wasn’t going to happen.
Bryan Lask:
We’ve talked about rewards and addiction and so on, and if you’ve got an addiction you may not be motivated to overcome it, you have got a problem that rewards you (every now and then) like gambling rewards you, until you keep going. So anorexia gives a certain degree of reward, then there’s no motivation to overcome it. One of the most important types of therapy is motivational therapy, where we work on the patient’s motivation, to help them to gradually reverse the balance. The balance is so much in favour of the illness, the pros of the illness, and we try to help them work towards the cons outweighing the pros rather than the pros outweighing the cons.

Mark Porter: [That was] Bryan Lask and you’ll find some useful links on anorexia on our website.


Here are those links:

A good book by Bryan Lask.
And another

Greengap13 Mon 14-Oct-13 23:38:54

Sorry I don't know if the link will work but it was broadcast on the 8th October on BBC 4 radio. Available as a podcast. smile

Greengap13 Mon 14-Oct-13 23:36:31

Had to post this as it struck a cord with me. I heard it by chance last week and found the piece on Anorexia very interesting. Although my ds doesn't have an ED he is currently in a unit with a few children that do. I hope this helps.

08 Oct
InsHealth: Shingles vaccine, Energy drinks, Liver tests, Anorexia 08 Oct 13
Margaret McCartney reports on confusion around the new shingles vaccine - including how old you have to be to qualify…

Mumorandom Tue 08-Oct-13 10:14:16

...sorry, posted too early. Meant to send you hugs.

Mumorandom Tue 08-Oct-13 10:11:34

Sorry for late response Flores, only just seen your post. Did you call the surgery? I'm sure there is nothing to worry about, but getting things checked might help put your mind at rest. DD1 had an ECG when we first saw her paediatrician (as part of CAMHS referral, results were all fine).

FloresCircumdati Mon 07-Oct-13 08:48:24

..carry on as normal but has been hard. I dont know what to do. Cant stand by and risk her dying in her sleep of heart failure!

FloresCircumdati Mon 07-Oct-13 08:46:30

Got her a coffee to help warm her up and when we got home I took her blood pressure and pulse. Blood pressure normal, but pulse was 40. I dread to think how low it was at the hospital, and it is playing on my mind that it was a problem with her heart, not a fear of needles as the nurse thought. She has a phone app for taking her pulse and she says it is often that low. She took her resting heart rate this morning, 45.

I've been reading around this weekend and scared myself with scientific papers on bradychardia with anorexia. Not sure whether to call the slow eesponsive surgery today or wait until tomorrow. Have tried to keep calm and

FloresCircumdati Mon 07-Oct-13 08:37:56

Thanks Mumorandam.

Am waiting for blood test results. Can call surgery tomorrow.

Dd has times when she has a tightness across her chest, and sometimes dizzy spells. After her blood test was particularly bad and she said, as we went out of the hospital, that she could feel her heat beat and it was really slow.

Mumorandom Fri 04-Oct-13 18:23:37

Hi Flores - really glad you're feeling calmer etc. Wishing you & yr DD good luck from one Dolphin to another. Keep on swimming brew

FloresCircumdati Thu 03-Oct-13 21:55:34

Just wanted to give an update to you lovely helpful MNetters who have helped me. I have bought the Skills Based Learning for Caring for a Loved One with an Eating Disorder and am finding it is really useful. Already I am much calmer and feel I have got some practical advice I can work with and now know how to talk to DD about it all, and she is even paying attention and opening up a bit as well.

I've taken her to the GP and he has referred her to the ED team. DD still has the upcoming CAMHS appointment, which she keeps as well, so she has/we have some help from there until we get an ED appointment.

Dancing Queen thank you so much! I hadn't realised how much I was on the wrong track over the control thing. I can now see how it plays a part, but nothing like the way I was thinking, and it isn't about how the parent/carer controls the person with the eating disorder at all - not in our case, anyway. It was really helpful to read that I am not causing this.

Dancingqueen17 Sat 28-Sep-13 21:45:02

Message withdrawn at poster's request.

FloresCircumdati Sat 28-Sep-13 18:49:37

becs thank you for replying, and for sharing your story, it does help knowing that there are others who have got through this and put it behind them and don't have an eating disorder any more. It is hard to cut down on the work, but I can't risk doing something that I'll regret forever. If I'm not here for her, then who has she got? I could be the only person who will do anything, give anything to help her.

Mumorandum Thank you, that is good advice. I will get that book and look around for specialist organisations locally. She has weighed herself and I think she has a BMI of around 16.7 (Was 16.4 a couple of days ago, according to the wii fit). That seems to be in the anorexic bracket so I will contact the number I have for the mental health services on Monday.

I've had a chat with her and am pretty sure she is lying about everything she can, saying she isn't too thin, it's not dangerous. I am assuming this is the EA taking hold, and her fear talking. She says she thinks the idea that she could be in hospital if she carries on losing weight this way is preposterous. She won't accept that she could die. She has in the past mentioned that she knows she could damage her heart. I've said that she could damage other organs permanently, and her otherwise happy and healthy future self could be burdened by a serious health problem she will need lifelong treatment for. she listened without comment.

She has gone from a BMI of about 18 to this in about 2 months; since the MH services appointment, basically.

Mumorandom Fri 27-Sep-13 19:06:06

Hi Flores, so sorry that you are going through this. Not got much time but didn't want to read & run. My dd1 (12) has struggled with ed & anxiety for some years. Reasons are v. complex. I would think about ringing the MH service you are due to see and explain how things have deteriorated and see what they suggest. Perhaps they could bring appointment forward? Perhaps see if they have specialist ED counsellor? My dd is now seen by a specialist ED team with child & mental health service (CAMHS). In our case, dd seeing the school nurse, school counsellor and general CAMHS team was of no help - she really needed the specialist ED input. It helped to have her BMI (done by GP) so could illustrate how dire things were getting and could access the specialist service more quickly.

Also this book really helps me to keep things together:
Skills based learning for caring for a loved one with an eating disorder
(Gráinne Smith and Anna Crane). Sorry, can't do link.

We also have a specialist ED voluntary organisation in our area. DD can't access as too young but perhaps something similar for you? I was able to access some counselling, reflexology etc - helped me feel less isolated etc.

All best

becsbornunderadancingstar Thu 26-Sep-13 11:11:26

Oh Flores I'm so sorry. I'm mainly just keeping this bumped for you as I'm sure there are other people who have more experience of this than I do. My only experience is that I used to self-harm from my teens into my twenties and suffered with depression and addiction and I know how much it meant to me that my parents loved me and supported me through it all. (I'm fine now, 40 years old, happy and relaxed - I wish the same for your DD with all my heart).

It's good that she's seeing MH services. And I think it's a wonderful thing that you're cutting down your work to give her the type of mealtime experience that she feels she needs at the moment. There may be people who can give you more practical advice, but I think by loving her unconditionally, being there for her through it, and just taking her to appointments you are doing so much.

Hoping that someone else comes along to give you more useful advice. Have another hug - MN conventions bedamned!

FloresCircumdati Wed 25-Sep-13 18:32:46

It is heart breaking, and makes me panic at times. I thought she was getting better but just lately she seems to have taken a turn for the worse and I don't know why.

Thanks for the unMNetty hug, much appreciated!

Yes, I took her to the doctor and then to a referral appointment. I wasn't allowed in for these, just dropped her off and picked her up (because she didn't want me in there). She said she told the doctors about the self harm, but I don't know what exactly and she didn't think it would help. She has her first follow up of the referral (to arrange whatever happens next) with the MH services in a couple of weeks.

I am cutting down on my work so we can sit down together as a family at the table. She likes that, but it's because she doesn't want meal times to be about food, she wants them to be social occasions together.

becsbornunderadancingstar Wed 25-Sep-13 15:48:35

I am so sorry - it must be heart-breaking for you. Sending you a hug. It sounds like she needs professional medical help now. Has she seen anyone before - about the cutting for instance?

FloresCircumdati Wed 25-Sep-13 14:13:58

NC as I don't want to out DD because of any over sharing I may have some over past weeks.

I don't know where to begin with all of this. DD is 15 and is now looking very thin. She doesn't want to talk to me about her problems (she would go to the school counsellor last term but I don't know if she said very much) but has said that she has an eating disorder. As far as I can tell it is about 'control' and she does it to make herself feel better.

Over the last couple of months she's been exercising a lot which we thought was a good thing, and a distraction, and an improvement from cutting herself which seemed to be happening less. However, she is becoming noticeably thin and I think she is being sick (from the food I find stuck in plug holes). In the last few days I've noticed she has been cutting down on evening meals and breakfast to the point of eating very little. She comes up with lots of excuses and wants to control every aspect of any food, has to eat from a certain bowl, will only eat half a small portion and often no carbohydrate. This morning she said she wanted to walk home after school (over a mile) and then walk into town and back (over 2 miles round trip) and turned down my offers of a lift. I have been trying so hard to give her as many of her own choices, I don't want to make her feel I am trying to control her if that's an issue but now it is looking like this illness is controlling her and by extension me and the rest of the family as well. She is looking so thin now, eating so little, and with evidence she might not be keeping down what we see her eating, I am getting really concerned for her welfare and don't know what to do. How bad does it have to get? What can I do?

In reply to her wanting to walk so far after school, I said I'd pick her up and she could walk into town later, and eventually she agreed. every new thing that comes along I feel so unequipped to deal with. I am starting to feel as though I have to help her protect herself from her own instincts, and make decisions for her as though she is a much younger child again. Sometimes this seems to be what she wants, sometimes that turns out to be just the wrong thing and she storms off and won't talk about it. I just want to help and I don't know how to.

I don't know how to help her out of this. She says she thinks she has put the cutting behind her, but that she will have an eating disorder for life. I am so scared that she will do herself some permanent damage or get to the point of fainting from malnutrition and needing serious medical intervention before anyone tells me what to do. What can I do to help her want to stop losing weight?

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