False Dawn

The Waif has lost a little weight again :-( She is now bang on 37kg (fully clothed) on the good scales and 35.8kg (fully clothed) on the reserve scales that the Waif then insisted on trying :-( :-( On the plus side, she has grown a cm since July so must have some spare energy somewhere.

Older Daughter came along too which leavened the session a little - it was Waif, OD and me with the psych. The psych said that ideally they would like both parents at sessions but fully understood that real life could get in the way.

He showed Waif her weight chart (far from upwards) and explained how he wanted to see a gentle up hill slope, and how that was important for bone formation. He then told her that she was by no means the worst case and that some girls, with the anorexia talking, eat salt and drink water before weighing to try to seem as though they have put on weight. I gave him a slight dagger stare at that point as I bet a thousand pounds that Waif would never have known that unless he had said it, but is quite clever enough to file it away as useful information.

Waif refused to let me mention the possibility of a new school to the psych, so I couldn't. So we talked about the usual mundanities, with OD there to help.

It ended with the weighing, finding that Waif was now 37.0kg in her school uniform (including jumper). I had pointed out to the psych that the time she had apparently put on weight was the time she wore her blazer as well. He took that on board and determined that from now on she should always be wearing the same clothes.

I was slightly worried as the psych clocked Waif's wrist support: she had fallen in the kitchen on Saturday night (having been fine skating on Friday night), and classically put out her hand to break her fall, but instead hurt her wrist. We have a hard solid marble floor.

I was quite in favour of a wrist x-ray but my husband and Waif both thought they had seen enough doctors. The psych had a look at it and his expert opinion was that it was probably a sprain but, as there was no swelling, was unlikely to be a break although only an x-ray could confirm it one way or another. He said that was up to Waif.

The psych finally seemed to take seriously my contention that there might be a physical cause for Waif's weight loss as she has been eating lots at home, at least in the last week - probably 2,000 - 2,500 calories a day. Mind you, she looked terribly thin a week ago and I also bear in mind that perhaps she lost weight in the fortnight before and has only just started eating properly again. I wish that the psych would tell her to keep a food diary EVERY day and not just for the week before appointments as it really focuses her mind on what she is eating rather than a general impression.

Anyway, the pscyh is going to consult a paediatrician and find out what blood tests might be useful for Waif eg Coeliac disease tests. He reassured Waif that he could categorically rule out cancer. She told him that he couldn't possibly say that, and he had to agree. We settled on wording that "there was no reason to believe she might have cancer." Apart from the weight loss, my subconscious couldn't help adding :-( :-(

I didn't have a chance to talk to the psych on his own to point out that Waif was doing OCD calorie checking on line. He is to call me later int he week about the blood tests, so possibly I can tell him then.

He is also going to try to arrange a neck scan for Waif via the paediatrician or, if not, then her GP.

We have our next appointment in a fortnight by which time we should have blood test results.

new hope

Waif has eaten so much better and so much more cheerfully since the middle of last week. This has coincided with talk of a new school......hmmmmm......it has also coincided with her keeping of the food diary so perhaps that is an alternative explanation.

I looked round the prospective school this morning and talked to the Headmaster. It is less academic than the one Waif currently attends (but, you know, still 60th or so in the country so a good prospect), and so will be less pressurised. I was pleasantly surprised as it has improved tremendously over how it was 6 years ago when I looked around it before Older Daughter's secondary transfer. It is mixed (70% boys) and much closer to home. I suspect both these factors will help. I also liked the art that was going on, which is Waif's main hobby so very important to her. It is much less "posh" which could be good, too, in terms of size zero mothers.

I have been given the HM's secretary's number to phone to arrange a day next week for Waif to sit a couple of exam papers and to meet the HM in person. I will call tomorrow after talking to the Waif's psych at the Maudsley today to see what he thinks of the idea. I am also taking OD along for the first time - without any real idea of whether the psych will want her in the consultation or not. I suspect he will find it instructive if he chooses to have her present.

Wish us luck this afternoon at The Maudsley....I sooooooo hope Waif has gained weight. I am fairly confident so will be shocked and saddened if not.....and elated if, say, she is over 37.9kg. I will post tonight with news.

This is Waif. You can't see her beautiful blonde hair or her large blue eyes, but otherwise it's not a bad portrait. She made it herself from a photo.

Treading on eggshells

Being a parent to a child with an eating disorders means being ever vigilant about what one says. I found a new food in Waitrose yesterday: a "jumble" made from oats, yoghurt and fruit. THis looked nutritious, delicious and, just as importantly, comes in good sized pots which could be taken to school for a good breaktime snack. I put 3 tester pots on the breakfast table. One with cherries, one berries and one with apple and pear.

Unfortunately, before I had introduced them to the girls, my husband said "what are these disgusting pots of sick doing on the table". There was no way I was going to have any luck after that :-(

On another point, I read this heartbreaking article this morning:

http://news.independentminds.livejournal.com/4791275.html

Thinking outside the box.

I am throwing my full armoury against this eating disorder thing! I am determined to unleash all fire power.

The Headmistress told me that many teachers have contacted her to say that Waif looks thin and ill, 2 of my friends from Monday yoga have separately spoken to me with their concerns, and my mother phoned to say that she thought Waif looked even thinner. It is time to take up arms.

My cleaner is from Hungary. She is a trained social worker there. She is a hopeless cleaner, but I can quite imagine she is a very good social worker. She is incredibly warm and kind. She is going to Hungary at Christmas and is bringing back a homeopathic cure for Waif. I am a natural homeopath skeptic but don't suppose it can do any harm. Let's hope for a placebo effect.

I have spoken to a nearer, less pressured, mixed school and found that there is a place for Waif available in January if she can sit an exam next week. Waif is very bright and I have no doubt she will pass the exam but am not fully decided whether it would be stressful for her to take a test. I am also not sure whether a school move would be good or not.

On the plus side, she has consistently told me that she is not happy at her current school and would rather be in a mixed school (which the new one is), and it is a lot closer to home, meaning that she would gain about 90 minutes a day in reduced travel. On the minus side, it would be disruptive and she would need to put effort into forging new friendships whilst still lacking in her usual spark and energy.

Our next appointment with the psychiatrist at the Maudsley is on Monday, so this is something that I will bring up. I am so hoping that she will have gained weight but know deep down that this is unlikely given comments from people who see her less regularly :-( She really #is# eating good meals at home.......

Talking to the Headmistress

The talk with the school went well yesterday - the head seemed genuinely concerned and genuinely keen to help.

Sometimes Waif's condition seems unreal to me, like a bad dream, and it is always a jolt when others are worried too, and that makes me feel sick and guilty at letting things slip so far.

They said that it would be possible to arrange for Waif to eat lunch with an older girl, the nurse or a teacher or even her older sister if I thought that would help. In a way, I suspect it would help as she wouldn't be able to not eat anything without being embarrassed, but I also know that Waif would hate it. She dislikes being singled out and being different. I have decided that if, when she is weighed on Monday next, she has not gained weight then I will enforce this nonetheless because food is the top priority.

In the meantime, I asked the school to let me know how often Waif has used her lunch pass. I have just had an email saying that she used it 4 days last week. This means that she definitely missed lunch on Thursday - why? I was out on Wednesday evening and left my husband to feed the girls. He said that he ladled an enormous portion of spag bol onto her plate and then insisted she ate pudding. Perhaps, bizarrely, she is compensating the next day.

I do not want Waif to know that I am having dining card usage reported back to me or else she will simply swipe her card even when she is skipping lunch and I will have less idea what is going on.

I wish that I could have some time alone with the psychiatrist at the Maudsley so that I can tell him that she is still skipping lunch occasionally (on the evidence, there may be some other explanation but I can't think of it) and that she has spent a long time checking calories on the internet.

Meanwhile, my mother phoned me today as we had been at a family party together on Sunday. She said that she thought Waif looked pale, listless and a lot thinner than she had looked before - I worked out that that was the beginning of September. Waif looks thinner to me too, but has not objectively lost weight when weighed at the Maudsley, although she may have grown a little. I wonder if she is drinking a lot before the visits? Sigh, this just made me feel awful again as I feel so helpless, and I couldn't wait to put the phone down :-(

I am cooking a chicken curry tonight with plenty of high fat coconut milk and ground almonds hidden inside, and I have Waif's white hot chocolate ready to microwave as soon as she comes in from school in 15 minutes time. I am going to take this one day at a time and ensure that Waif eats enough at home to compensate for any non-eating at school. If she still loses weight then I will take her out every day for lunch.

I am taking this one day at a time and am absolutely determined to succeed every day.

Feeling more cheerful

We had a good weekend. Waif ate well on Saturday and Sunday :-) and her mood seems to have lifted a little. If we can just keep this up....

Today, I feel as if I might be able to make some progress as I am meeting the Headmistress to discuss how the school can help Waif. I am not at all sure how this might be but if they could monitor whether or not she has lunch (at least let me know whether her swipe card has been used in the dining hall) then that would be a start. If, in addition, they could have her eat lunch with the nurse, or another member of staff, then that would be even better.

I sat next to the Headmistress of a diferent very smart London day girls' school last night at dinner. She had the attitude one might expect in her position: if parents are not in accordance with "her" values, then she would suggest fimly that the school was not a place for them. I guess that's what happens when you have 10 girls applying for every place. She said that she picked up phone calls from parents saying "My husband and I both got firsts at Oxford, you really must take Francesca" where Francesca, aged 3, has just failed the entrance test (snort). The HM says she is never swayed but gets baleful looks at Waitrose from rejected parents so escapes to the country at weekends. I guess there is no better way to choose....

We ended up discussing the Waif and she (the headmistress) told me all about her own eating issues. As she noted, I was disturbed by Kate Moss's comment this week "No food tastes as good as skinny feels.". Hmmmm.... well, for KM's information, skinny feels bony and fragile when you hug it, not warm and reassuring. I didn't realise that was a pro-ana mantra :-( How sad. I hope Waif never gets to hear it.

Most of all, I feel that I have made the right decision in stopping work for an extended period. I will be here for Waif, and for Older Daughter, every time they are home from school and much freer to be with them at the week-ends too.

I am even assimilating the information that Waif's internet history is full of calorie checks for every single food I have ever fed her. This explains how she cheerfully eats her first 2 mince pies but the very next day declares she dislikes them - she has been checking calories. So when she tells the psych that she wants to gain weight I am not sure she is quite playing with a straight bat. But at least she has not been accessing any pro-ana sites. Phew, that is a relief. We have lots working in our favour: the Maudsley, the fact I can be home, we have caught it early and the fact that Waif is such a biddable child (hmmm.... to a certain extent anyway), and seemingly not depressed at all. I am glad: if she were miserable too then my heart would bleed even more for her.

Trouble

Waif came home from school today and into the bath, as we were off out to the theatre (The Nation at The National).

She decided to use our en suite and undressed in front of me. She is suddenly frighteningly skeletal :-( Even H now agrees - he saw her arms yesterday in a video on World War 1 that she did for school and he was shocked at the fact that it looks only like a bone - her elbows and knees are much broader than the limbs above and below the joints.

Waif has claimed to have gone off hot chocolate for a few months now but, when pressed, agreed she would drink white hot chocolate. She found herself some sachets the other day, but I looked at the pack and it was an "add water" low calorie, high chemical sweetener affair. Wiaf got very cross when she discovered me adding milk in too.

So today I found some proper sugar and cocoa butter white hot chocolate powder in Waitrose and brought it home (oh, my resignation at work was accepted yesterday hence my time for Waitrose today). She drank a cupful on her return home (pre-bath). Result!

We ate sandwiches pre-theatre. I made a large selection and bought some extra: Waif ate half a tuna sandwich (no butter, crusts cut off) and half a duck pancake. This might be enough supper if she has really eaten lunch. I doubt it.

When we got home, Waif also ate - disgruntled and under pressure - a piece of toast and jam.

I found her asleep in front of her laptop 20 minutes later. I have been hatching a plan and so I took the laptop from her. She was still logged on. I pressed "ctrl H" and saw her sites for the day, which can only have been about half an hour between her bath and leaving for the play.

Mostly Facebook but then 6 searches for "calories, white hot choclate, whittards, Waitrose." :-( :-( So perhaps that is why she rushes off after every time she eats. She is checking calories. But why, for goodness sake? I am so worried by this. I so want to help her and reach out to her and now I seriously fear she is heading towards permanently damaging her body.

My husband said that Waif's breath smelled very strange tonight. I guess that might be ketones - a sign of starvation and, I dimly believe, possible kidney damage. It is a wake up call.

I have arranged to go in and talk to the headmistress at school on Monday. If they can't watch Waif eat lunch, then I will go in every day and supervise her eating personally. I have no faith in her eating otherwise.

Meanwhile, the Maudsley have again postponed Waif's next visit due to the (almost) psych's exams. Yes, I am sure they are important, but how come he doesn't know about them 2 weeks in advance? I have been offered Thursday at 3pm or the following Monday at 4pm. I am tempted by the Thursday slot as it is closer but know that Waif would prefer the 4pm appointment as then she doesn't have to find an excuse to miss lessons which she finds difficult to explain to her friends. I will see how she eats over the weekend.

I am going to not go out tomorrow to training unless and until Waif has eaten THREE things for breakfast: hot chocolate, egg on toast, and some yoghurt or cereal.

H and I are supposed to be attending a Bat Mitzvah on Sunday - morning and evening. I am not sure if I can, in all conscience, leave Waif over two mealtimes. I am torn as the girl is my oldest friend's daughter and I have not seen as much of her as I would like.

I am so glad I have stopped work as I would never forgive myself if I didn't do everything humanly possible to help Waif. I pray it is enough.

My mission tomorrow is to get 3,000 calories down Waif. I shall report in 24 hours. Waif will not like it at all :-(

The longhaul

It occurs to me that I should rename this blog EDNOS mummy in view of Waif's diagnosis (Eating Disorder Not Otherwise Specified). It doesn't have quite the same ring about it though.

So how is it all going? Well, the eating seems ok although Waif is becoming generally stroppier at meal times or whenever the subject of food is mentioned.

I guess that is not surprising, but it is "new" - she has always been such an easy going child. Perhaps it is just a normal teenage development but it only seems to happen at mealtimes so I think not. Yes, she will still eat what I ask her too, but with a fairly bad grace. No chatting at the table. And then she makes a fast exit for the kitchen door and up to her room. Always. I don't think she is going off to be sick. Older Daughter reckons she is trying to avoid the washing up. I reckon she is hoping to skip pudding - sometimes she succeeds. I have to steel myself to make her eat more than I could comfortably eat myself. I tell her (and myself) that it is short term only until she is 42kg and then she can eat what she likes.

Waif arranged to see a friend for lunch on Saturday, and then I picked her up and took her to a different friend for a sleepover.

I warned Waif beforehand that she must eat properly at both houses. I felt it only fair to let her know that H and I had considered not allowing her to go to friends for meals, after last time when she told them she had eaten when she hadn't, and that if she had not put on some weight by her next Maudsley visit, then we would have to ensure she ate all her weekend meals with the family. She did not take this well. I still think it was better to fire a warning shot than to spring a grounding on her next week which would be, from her point of view, out of the blue.

Sigh, am I allowed to note that a great weight lifts off my shoulders when Waif is elsewhere for a meal. I feel like matters are temporarily out of my hands and that we can enjoy our food without worrying about what Waif is/ isn't eating and without having constant negotiations about whether she can trade a sausage for a tomato etc and how she no longer likes mince pies/ ice cream/ hot chocolates / anything with lots of calories shown on the pack.

I have booked an all-inclusive holiday for us in the New Year (29 December to be precise). Yay! We are going to St Lucia :-) :-)

My colleague at work said that the only minus with those places is that you come back having put on a stone. That sounds like a big plus to me! We could all do with weighing a little more - H and I are within the normal range, but only just. Which is when it occurs to me that perhaps H is right and Waif is just thin like he always was, and that I have turned normality into a big deal. Then I remind myself that she LOST over 10 pc of her bodyweight between Easter and the Summer through not eating, and that that cannot possibly be normal. The H now calls her "Twiglet".

Older Daughter said I was sending out mixed messages today when I said that a normal portion of chips was fine and I didn't want to buy her a "large" McDonalds. Maybe she is right - it's nothing to do with weight though, it just strikes me that she would be better off eating a normal portion of chips and fishburger and having a rice pudding or piece of fruit at home if she is still hungry. Sigh, Monday nights are MacDonalds - every other evening I cook something organic. Yes, I guess that's a mixed message too. Waif won't eat the MacD these days, so I now cook on Mondays too btw, even though it first started as bribe for her to keep up piano- "If you keep going to piano lessons, I will buy you a MacDonalds straight after your lesson."

Waif is due home in 10 minutes and I have put mince pies in the oven for her. Yes, yes, I know I said above that she has suddenly decided she doesn't like them, but they were her favourite food until a month ago when we bought a pack and, halfway through, she read the pack (rats, I should have hidden it).

Meanwhile, I am half heartedly arranging a meeting with the school. I sent in a letter about how it should be possible for a girl to forget her swipe class and yet STILL get lunch even if she has a detention or activity in the lunch hour. To my surprise, and sadness, I got a snotty, defensive response which said that I had "declined meetings" to talk about Waif and suggesting that I fix one up. Snort: the only meeting I declined was one where the nurse wanted to see if Waif was well enough for school. That didn't seem very caring to me. My email last term asking what support the school could offer was totally ignored.

Ho hum, at least my latest letter has prompted the headmistress to suggest a meeting, so we are to have one soon. Maybe next Monday as that is my day off work and I really can't take more holiday and be taken seriously. I am still waiting to hear if my resignation has been accepted.

Next Monday is also Waif's next appointment at the Maudsley. Fingers crossed.

Back at the Maudsley

On Friday, my husband and I both took Waif back to The Maudsley. This time the psych talked to Waif with us both there and only weighed her at the end. By that time Waif was so upset she was beyond talking to him and even saying goodbye.

She had apparently lost weight (37.2kg dressed) - 600g lighter than last time. But I reckon her weight has been pretty stable as she was wearing her school clothes this time and no blazer.

Having been quite positive and chatty throughout the consultation - forever saying things like "well Waif, when we weigh you I really expect to see you have put on weight" (everytime he said that I cringed as I suspected it would not come to pass) - the psych got suddenly serious in the last 2 minutes and told Waif she MUST stick to the meal plan. I think he was genuinely surprised that she hadn't put on wieght. Sigh, he hasn't even passed his psych exams yet, bless him.

I keep expecting an "answer" or an explanation of how we should tackle this, but we seem to purely have inane conversations about how Waif enjoyed Paris and what she is doing at school and who is around for meals. HThe psych asked Waif how she thought she had been eating and she said "fine". I said I thought that whilst she was doing quite well when I was around, I didn't think she ate much when I wasn't there. Waif asked me what I meant. I said, like the night I went to Champneys. Sigh, she couldn't leave it and asked me to explain further, so I said I had phoned her overnight friend and found out that she had told them she had already eaten when she hadn't, and that older sister had found her sandwich in the bathroom bin the next day at lunch. She went bright red and became tearful. I felt like a snitch and don't know whether I should have not said anything.

My husband's contribution was to say that he had been very skinny when he was young. His implication that perhaps Waif is just normal seemed to pass the psych by - I am not surprised as she is so clearly much too thin. In fact, I have had the school head of year contact me again yesterday to say that several teachers were concerned about Waif's weight.

So yesterday we finally got the initial assessment: EDNOS has been diagnosed (eating disorder not otherwise specified). It has been copied to our GP with a note that the lump in her neck needs to be looked at further. Perhaps this will prompt him to finally organise a scan.

Meantime, I half resigned at work on Monday but have not yet heard back whether my resignation has been accepted and on what terms - technically I have a 3 month notice period but I am hoping not to be held to that as I don't feel I am coping at the moment.

I am cross with the school today - perhaps I am casting around to find people to blame which is not helpful. Today Older Daughter was unable to have lunch (ie unable to eat between 6.45 am and her scheduled return home at 6.45pm) all because she forgot her lunch pass and her maths homework. Forgetting the lunch pass means that you can't eat until 1.15pm, after the others. Forgetting her maths homework meant that she had a maths detention at 1.15pm so couldn't eat at all. Then, to add insult to injury, the maths teacher had not set work for the detention so OD was sent away and told to redo her detention tomorrow. By then it was too late to get a lunch chit - so she missed eating FOR NOTHING. I cracked and picked her up from school at 4.30pm so that I could take her to eat something. Her Art coursework will have to wait.

I think I am going to bring this up with the headmistress as the school has a big problem with eating disorders and I think that partly it is because of the purely practical arrangements resulting in it being quite difficult to eat lunch on occasions.