Thursday, 17 December 2009

New uniform

Waif and I went to buy her new school uniform this morning. It was heart tugging......the skirt was okay because she was able to buy a tiny size (20 inch waist adjusted to its minimum) and it merely came out very short which she was more than happy with, saving her the need to roll it up at the waist as is customary amongst the others, but tracksuit trousers were a nightmare. The ones that vaguely fitted around her waist stopped just below her knees. The ones that were lon enough were so enormously big that there was no way she could sensibly wear them and no way they would stay up. We compromised and got some that looked quite a lot too baggy and quite a lot too short, but not too much of either.

Meanwhile, we have booked for the Maudsley on Christmas Eve. We are going at 10am because the psych said that 9.30 was a bit early for him as his trains are a bit unreliable. I thought it was only solicitors who had such late starts! My husband has decided to go along with the Waif but I am driving them as I know the back routes and the roads will be choc-a-bloc the day before Christmas. I have not yet told Waif that her father is coming. She will be very cross and I am delaying her fury as there is nothing I can do to change the situation.

Meanwhile, lots of people are saying to me that OD looks too thin. Well, compared to Waif, she's not, but I guess compared with all her friends, she is :-( Ho hum, we are a slim family.

Wednesday, 16 December 2009

Academic success

I have accepted Waif's place at her new school. In a surprise and very human move, her current school are waiving their fees in lieu of notice thus saving us a welcome £5,000. The Headmistress was incredibly kind saying that Waif could return any time if her new school didn't work out. This is a fantastic backstop.

The HM at Waif's new school told me that Waif had scored scholarship level on her entrance papers and is going straight into all the top sets. Waif was a bit daunted by that news but I reassured her that she would be fine. This means however that she will share no classes with her best friend who is already there and is far from academic. They can still meet up after school :-)

He also asked me about her thinness. I told him that I too was worried and that it was under investigation at The Maudsley, and we were hoping that a change of school would help.

Meanwhile, my husband has surprised me with the news that he is taking Christmas Eve off work and so is free to come with us to our next Maudsley appointment. Waif has confided in me that she does not want him there. When pressed, she said it was because she "could not relax" when he was around. Hmmmmm... I am not sure what to do about that one. Probably, he won't want to come anyway on his day off. Perhaps though he should come precisely because it challenges Waif.

This morning, Waif told me that she has 14 "outstandings" in her report. Older Daughter has only ever managed 3 at most.

There are 2 grades for each subject - one for effort and one for achievement. OD does not get"outstanding" even when she has come top in exams because she forgets to hand in homeworks.

Waif is a very different child; a perfectionist. When my husband arrived at the breakfast table I told him, and he asked Waif (jokingly, naturally) why she didn't have outstanding in "all" her subjects and which result was her worst. Poor Waif confessed that she had ony "good" and "very good" in maths. I was surprised as she is remarkably talented at maths. She said it was because she had missed so many lessons (through going to the new school and visiting the Maudsley). Husband told her it was because she is so poor at mental arithmetic (another joke - Waif's favourite game is a mental arithmetic competition which she always wins and I have maths "A" level!) Poor Waif. I am so impressed by the 14 outstandings that she did get. And yet also a little worried - she pushes herself so hard to be perfect at everything.

Being good enough does not satisfy Waif. She sets herself incredibly high standards. She has written A4 sized fold out cards of goodbye for her two best friends at her current school. In each case, she has assembled and printed out photographs from the past few years and pasted these in with comments and jokes.

Ho hum, today is her last day at her current school. It will be good to have her home for 3 weeks to feed her up, although I suspect it will be relentless work.

Meanwhile, I am hoping for her blood test results soon. I will keep you posted.

Monday, 14 December 2009

Back to THe Maudsley

Waif weighed in at The Maudsley today at 37.4kg (dressed) which is 400g more than a fortnight ago, and 900g more than her first visit in late September. She has also grown a cm. Hmmmm....... this is so much better than losing weight but I feel that we are swimming against the tide and have only just been making headway through supreme effort which can't last for ever. I guess I have to put that thought aside and we have to keep battling. We had fajitas tonight but Waif refused the sour cream and the guacamole, and had only the pancake, red pepper and chicken. She basically will not eat any food with a high fat content. She managed some cake and a strawberry yoghurt for pudding, and I will make her a hot chocolate and kitkat later in the evening.

Oh, Waif also had her blood taken today for the tests - fbc, kidney function and coeliac disease screen. I bet they will come back as normal, which will mean we can really concentrate on the eating.

I had lunch with one of my oldest friends earlier in the week. I had known her mother was psychiatrist from when I was 11 years old, but my old friend told me that her mother was actually a psych at The Maudsley specialising in children and families, including eating disorders. It was thus interesting to listen to her perspective as we watched Anish Kapoor's red wax cannonball strike the walls of the Royal Acadamy and splatter blood coloured drops. Perhaps this is out of date but Old Friend reckoned that something must be deeply upsetting Waif and that the reason she refuses to talk about it is because it is so painful to her. I can't fo the life of me imagine what it could be. OF wondered if there was any tension between me and my husband but there isn't really (the normal jaded been- married- 17 -years- stuff - and- wondering-whether- there -should- be -more- to -it - mid- life-crisis, that's about it).

The psych now wants to see Waif weekly and is firm about wanting progress. He has also asked her to keep a permanent food diary, which is something I mentioned to him by email as being very helpful when we have done it.

Meanwhile, I tried but failed to see Waif's Headmistress today (it turned out that the long call I assumed the school was on turned out to be a day long power cut), and am seeing her instead first thing tomorrow to discuss leaving arrangements for Waif. I am also aiming to ask her professional opinion about how much to disclose/ involve Waif's new Headmaster - this was OF's suggestion, and a good one.

Waif has only 2 more days left at her old school. I have told her that she doesn't have to go in if she doesn't want to, but she does. I hope that is a good sign.

Friday, 11 December 2009

New school!!

Waif has been accepted at her new school!!!! I am so relieved as the news took a long time to reach us and I was worried how she might cope with rejection.

I am now not quite sure how to deal with the situation: whilst I had mentioned to the new Headmaster that I was worried about how thin the Waif was, I did not out and tell him immediately that she is being treated at the Maudsley. That's not really a first date topic.

So before I accept the place, I guess I need to put all my cards on the table and ensure that there will be flexibility for Waif to attend medical appointments and for me, if necessary, to come in and supervise her lunch - as the school is much nearer home, and as I am on sabbatical, that would now be a feasible option. OTOH I don't want them to take fright and withdraw the place!

I am even wondering whether I can persuade Waif onto the scales tonight and tell her that she is not starting at ANY school next term unless she is over, say, 39kg - she has 4 weeks to get there so that is an achievable goal (she was 37.2kg when last weighed clothed a fortnight ago). I am hopeful that the lure of the new school and the embarrassment of not being able to start on the first day will prove to be sufficient persuasion for her to really give it a go, and will also ensure that she has the energy to cope when she is actually there.

I also need to talk to the HM of her current school - about notice payments and about leaving the door open for her to return if matters don't improve at the new school.

So I have a few logistical problems but, in the round, I am overjoyed, and hopeful that this will prove to be a turning point. I certainly hope so - last night the Waif was up on stage reading out a poem at Poetry Evening at school and looked so emaciated next to her healthy weight classmates. It makes me realise that even Older Daughter is too thin (hmmm...... not helped by Waif following her round the house with snacks and drinks and trying to persuade her to eat all the time ad telling me that OD has not finished her meals which has the opposite effect).


Saturday, 5 December 2009

Photos


I was looking through photos of our Summer holiday 2008. There was Waif looking happy and healthy - a beautiful little girl (then aged 11 going on 12). It brought a lump to my throat to wonder why she has starved herself between then and now, and now looks wan and thin, and several years older :-(

I saw a picture of an emaciated dog in an RSPCA advert. I thought of cutting it out and showing it to Waif and seeing if she thought the dog looked better than a dog of normal weight or whether it just looked ill and boney. She loves dogs and would be very worried about the skeletal one. I thought perhaps this might make her think again about how she wants to look, and what others might find attractive. I haven't done it yet.

Water Aid

Te Waif sat her entrance examination for the new school on Thursday. It seemed to go okay so fingers crossed......I was a little disappointed not to have heard from the Headmaster yesterday (Friday) but perhaps it takes longer than that to mark papers and to get hold of the Head at Waif's current school for references.

The psychiatrist from The Maudsley phoned yesterday but my husband took the call so I had no chance to add my tuppence worth - I want to let him know that, whatever she claims, Waif is calorie counting and calorie restricting. I also want to ask him about the change of school. I will call him on Monday.

Meanwhile, Waif announced to me that next week is Water Aid at school. This means that the girls are encouraged to drink only water (?????in solidarity with Africans who have not enough water) and not, Waif says, hot chocolate or juices. I have told her in no uncertain terms that that does NOT include her. I explained how the school would fully understand and even looked up the following about Ramadan as an analogy:

* A sick person: may break his fast which, if continued, would only aggravate the illness or delay its cure. Similar is the case of a the person who is overcome by hunger and/or thirst and fears that he may die because of it, even if he is resident and healthy.

I am tempted to follow this up with a mail to Waif's school to ask them to make clear that they are NOT asking the girls not to drink the milk that they need for strong bones and healthy teeth; that they are only asking the girls to give up sweet, fizzy drinks. I suspect that they are indeed asking the girls to give up ALL drinks but hope that such a mail might make them reconsider exactly what they are saying. On the other hand, I don't want to come across as the difficult parent from hell....

Addendum: it gets worse! On the school website it is urging the girls to get "sponsored" to give up hot chocolate and other drinks for a week!!!!! I am afraid that I will write.

Wednesday, 2 December 2009

New book

I was amazed to find this in my inbox today as I have never looked at eating disorder books on Amazon:


As someone who has purchased or rated The Oxford Companion to the Mind (Oxford Companions) by Richard L. Gregory, you might like to know that The Treatment of Eating Disorders will be released on 8 December 2009. You can pre-order yours for just £41.33 by following the link below.

The Treatment of Eating DisordersThe Treatment of Eating Disorders
Carlos M. Grilo
RRP:£43.50
Price:£41.33
You Save:£2.17 (5%)

Release Date: 8 December 2009

Pre-order now!


I clicked through and read the title
pages and the first part of Chapter 1.
It seems spot on and I have pre-ordered the
tome.

THe differential diagnoses for weight loss
were somewhat alarming - brain tumour, AIDS, and gastro-intestinal disorders :-o

But the next page stating that the best prognosis was for those caught young (yes) and early (yes) without the full spectrum of symptoms (yes). This group can be in remission within a year and then make steady recovery. This has given me hope and prompted me to spend the £42 if only so that I can read that paragraph regularly :-)

Waif seems much more cheerful at the moment even though the late night snack last night was a little traumatic as we had an argument over what size hot chocolate she should have (she wanted tiny, I was gunning for the 1/2 pint cup).

Monday, 30 November 2009

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.

Saturday, 28 November 2009

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.

Friday, 27 November 2009

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:





Thursday, 26 November 2009

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.......

Tuesday, 24 November 2009

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.

Monday, 23 November 2009

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.

Friday, 20 November 2009

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 :-(

Monday, 16 November 2009

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.

Tuesday, 10 November 2009

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.

Thursday, 29 October 2009

24 hours away

We went, as a family, to Paris for a long weekend. We saw the Musee d'Orsay, the girls had their portraits drawn at Montmartre and they sailed toy boats on the pond in the Jardins du Luxembourg.

We managed to eat fairly well although not on the Monday of our return when we seemed to miss lunch and so Waif had had only a croissant by 5pm :-( She struggled with her luggage at King's Cross and my husband told her that she wouldn't be feeling so tired if she ate properly and she ought to realise the consequences of her choices. Sigh, I can't agree with his approach. I believe it is our job to make eating easy for her and to serve regular meals with proper portion sizes, and to hold off on the criticism.

On our return, I went away for 24 hours to stay at Champneys. When I came back yesterday I found that Waif had eaten nothing since I went - she went to a friend's house for a sleepover and when I called them to thank them (ok, ok, and to check up on what she had eaten) they said they hadn't fed her as she told them she had already eaten. She hadn't. Then yesterday for lunch she made herself a sandwich that she refused to eat in front of Older Daughter. When OD went upstairs to check on Waif, Waif said she had eaten the sandwich really quickly. OD checked the bin and found the whole sandwich :-(

It's tricky, I realise that deception is part of this disorder but don't want to be oversuspicious of my own child. This morning she has had a croissant and piece of toast for breakfast.

At 11 o'clock I told her I was making her a hot chocolate. She asked me whether she could instead go and get a frappucino from Starbucks. I said yes, provided she brings it home and eats it in front of me. She then proceeded to tell me in great detail how it is full of cream and sugar. I grew suspicious and asked if it wasn't low calorie. She confessed they did a low calorie one but it is disgusting (hmmm.... when and why has she tasted it). Hmmm.... She is home right now with her frap. I am just going to see she drinks it. I do hope it is the full calorie one....

Maudsley visit 3

Waif went back to the Maudsley. Um, blush, actually the appointment turned out to be Tuesday but luckily I was just phoning to confirm the time on Wednesday, and they were able to tell me that Waif was expected in half an hour. We made it by driving fast!

The psychiatrist weighed Waif first off. She was wearing the same(ish) clothes as last time except this time she also wore a blazer as the weather is colder. She weighed 800g more :-) The pscyh was pleased. I reckon her blazer weighs about 800g, but at least she has not lost weight.

THis time the psych had Waif and me in together for a chat. He asked her lots about what we did "as a family". Waif basically said nothing i.e. she said that we didn't do much as a family. I reminded her about theatre trips (hmm, about 4 a year) and training on Saturday mornings (she pointed out Older Daughter hadn't been for ages) and bridge (we have only just started.) But in the end, there is not much we do "as a family". My husband does not generally get home in the evenings until I am in bed and at weekends we often go to dinner parties without the children. We eat breakfasts and weekend lunches together at least.

I said that I was going to resign from work next week. I decided this after talking with friends who all said that I would wonder forever if it would have made a difference if I was home with Waif....... I am lucky that we don't need our income, and the choice is easier for me as there is so little to do at work at the moment, what with the banks all doing a lot fewer structured deals these days. The psych asked me why I was resigning and I explained it was a big year for my daughters. Waif said it was only Older Daughter who had GCSE's.

The psych then said that his psych exams are next week (!) after which he will be a registrar. Hmmm...I thought he seemed inexperienced. I hope that he has the enthusiasm, knowledge and commitment of someone fresh to the subject to make up for lack of experience.

He had a very very short flick through Waif's illustrated food diary. He said he didn't need to look at it closely as she had put on weight (or a blazer...I wonder if they find all their patients put on weight in the Autumn and lose it in the spring?).

I came away feeling a little more hopeful.

Sunday, 18 October 2009

Flu

The anti-biotics seem to be working for Waif. Bless her, she is meticulous about taking them at the appointed hours.

She has also been keeping a food diary this week ready for our appointment on Wednesday (rearranged from tomorrow). She has been eating lots! Matching me at mealtimes (minus my odd glass of wine) and having puddings, snacks and milkshakes in addition. But she still has not gained any weight :-(

In the back of my mind, I am nervous about her chest x-ray. What is a consolidation and can it be caused by something other than a chest infection? Waif doesn't seem ill enough to have pneumonia.......

I am going to ask on Wednesday and then, if indicated, take Waif back to the GP for an ultrasound on her neck and any kind of investigation that might be needed to examine the lung consolidation. Of course, there is a nagging fear that the lung consolidation is ominous: doesn't cancer cause weight loss? When I try to look it up on the internet I keep getting advertisements for debt consolidation. Grrrrrrr...

Thursday, 15 October 2009

correspondence with GP

I have now heard back from the GP. I originally wrote to him:

Dear Doctor GP

thank you so much for your referral of my daughter, Waif, to the Maudsley clinic. We have been along for two sessions now and everything there is very efficient and I am reassured that she is getting the best possible treatment.

As I understand it, they agree that Waif is very underweight (77% of where she should be, whereas 84% or below is considered to be a marker of anorexia). However, on her questionnaires she does not seem to display other indicators (concern over weight, anxiety, depression). She is a clever girl who plays her cards close to her chest so it is quite possible that she has not made full disclosure on the forms, and that may come out in the weeks to come. However in the meantime she continues to lose weight, albeit not as quickly, even though she appears to be eating well at mealtimes.

The reason for my letter is that I am concerned that whilst the Maudsley are understandably pursuing the Eating Disorder route, which could well be right even if not currently indicated psychologically, perhaps there could be some underlying physical cause for Waif's weight loss? I know that you took some blood tests and wondered if there is anything more that could/should be done to exclude any physical basis for Waif's condition, either directly or through causing loss of appetite? If there is, then I will make an appointment with you and bring her in - I have not done so immediately because she is fed up with being dragged along for medical appointments and so I wanted to touch base first.

One further point: the Maudsley wanted a set of baseline blood tests done but Waif was reluctant and distressed by the idea so I thought that perhaps your surgery could please forward the results from the blood test that she had done a few weeks back - so far the only details that the Maudsley have is that the "tests proved normal" which is a little generic for their records.

I am so sorry to take up yet more of your time and very grateful for all your help.


Kind regards


Anorexia Mummy



The reply:



Dear Anorexia Mummy

Thanks for your e-mail and apologies for delay in replying due to my leave.
I have printed out all the blood results to hopefully avoid further tesing for now - as noted before they are all normal.
This makes a physical illness much less likely, reinforced by Waif's story. The results are in reception for you to collect.
Your observations on her lack of disclosure of other concerns are very apt, and probably have been considered more at the Maudsley, for further development.
The need for further investigation is something the Maudsley team might comment upon after they have seen the blood results, but is less likely to be necessary for the time being since Waif is not complaining of other symptoms and seems well in herself apart from the weight problem.
Please do bring her in if there are concerns following this note and any discussion at the Maudsley - or if new features arise you or she feel concern about otherwise.
With best wishes,

your GP

Sufferers say.....

Katie left a thoughtful, heartfelt comment on my blog 2 posts ago. I then spoke to my closest friend at work about Waif and she shared with me that she had been anorexic at the same age as Waif (13 years old), and she was keen to share with me how she had been. I was even more keen to hear.

Ironically, we met up at lunchtime - my friend eating a salad, me not as I had an infected tooth implant (now better).

What she said echoed so much the lovely Katie's sentiments: my colleague (now a high flying ex-Oxford city lawyer) said that she had been deeply, deeply unhappy at the time. She said it didn't matter to her when people told her that she would damage her body as she just simply and truly didn't give a damn - she even entertained thoughts of suicide so why would damage concern her? Like Waif, she said she would have duly given all the "right" answers on questionnaires about being balanced and happy. Intelligence is a mixed blessing.

Whilst my friend is now well, and is a mother to two lovely children, she said she was shocked by the fate of some of her compatriots from that time. One friend of hers had a heart attack and died aged 30, almost certainly caused by heart damage sustained when she had been anorexic. She, like Katie, said that she would lie and deceive in order to be able to skip food. She wanted to show that she was in control and didn't need food.

She asked me about my husband (whom she also knows) and whether he shows any affection for Waif. She said that when she was young, she was convinced her father didn't love her, although now, with adult wisdom, she can see he always did. She said he never told her she looked lovely and never hugged her and never told her, openly and straightforwardly, that he loved her. Sigh, this is tricky. I, as an adult, know how much my husband loves Waif. Yet I can see that this may not be clear from her point of view. He is a classic father "What on earth do you think you are wearing? " or "Now how is your homework?" (but only when he knows she is behind) and he does do that male thing of criticising her (and me and older daughter) when we eat: in particular he will say to the girls that they are built "like my mother" and have to be careful to watch their weight. His mother, incidentally is tall and slim although she has reasonably big hips (bones only, not fat). He has stopped that now but perhaps a mindset has come about.

It occurs to me that Waif started getting thin when I couldn't eat in February due to a fall and a broken jaw. I lost weight and went from "slim" to "skinny". Perhaps there was some kind of empathy taking place. I am now making an effort to eat properly in front of the girls.

Sigh, this is silly. There should be no blame, just an enemy (the eating disorder) and teamwork to vanquish it.

Waif has just had her first dose of antibiotics. One is to be taken twice a day (9am and 9pm I reckon), and the other 3 times a day (6am, 2pm and 10pm seems realistic).

backwards

After our fist visit to the Maudsley, Waif stuck gaily to her eating plan. There was some negotiation: "Mummy, I don't want two icecream fingers, can I make the second one a biscuit?" or "Mummy, I am having a chocolate bar for a snack instead of just a fruit juice, so I can have one less thing for breakfast" but generally there was compliance and I felt very relieved.

So it was disappointing to discover, on returning to the Maudsley 2 weeks later, that she had lost a 0.5kg. The psychiatrist was at pains to point out that no diagnosis had yet beenmade (??how did that square with him telling me on the phone that Waif had EDNOS (eating disorder not otherwise specified).

After weighing (once again he seemed surprised at the result and he cross checked with a second pair of scales), he took her off for an hour to chat. Waif reported he was just asking her about books and films. He strikes me as ineffectual, and very young, but perhaps he has a cunning master plan. He did however sensibly suggest that Waif should keep a food diary. Waif expressed horror at the extra work this would involve when she already feels overcommitted and we compromised on her doing it for a week before her next fortnightly visit. She started it 3 days ago.

Meanwhile, I have returned to work and school has restarted. I ask Waif daily what she ate for lunch and she usually trots out the correct answer of "pasta and bread and pudding" or somesuch. I have been unbusy at work so have managed to return in time to cook her supper each night.

If (big if) Waif is being truthful about what she has eaten, then perhaps there is after all a physical reason for her weightloss. As I may have mentioned before (sorry, I am getting behind on this blog) I took her back to the GP to have her neck lump re-examined as the Psych had thought an ultrasound would be a good idea. However, the GP was very reassuring: it is definitely a goitre - a lump on the thyroid gland- and inactive as her thyroid function blood tests were normal - so no further tests were needed. However just today, the doctor at A&E (more explanation later) opined that we should return to the GP and ask for an ultrasound.

The latest comment on my last post gave me great pause for thought, as well as being incredibly moving. I think it is right that an anorexic child is going to be deceitful so I am not ruling out Waif rushing off and being sick after meals, or not eating AT ALL at school :-(

Older daughter has had flu this week, progressing from a cold last week, and so has been off school (meaning that I have had to miss work even though I am just back). Waif, whilst not seeming as ill - she had no temperature on Monday and Tuesday - has also been off ill as she has not felt up to going in. I have thought this not such a bad thing as I can feed her up at home. But yesterday, Waif too developed a temperature and a cough, and this morning she woke up unable to breathe properly. Luckily she was in bed beside me as she would not have been able to call. After a brief wrestle in my mind (car or ambulance?) I put her in the car and raced to A&E. Typically, and mercifully,she had recovered by the time we arrived 4 and a half minutes later (quicker than an ambulance would have got to us I reckon, and cheaper for NHS and less embarrassing) but I took her in to be seen anyway.

I am quite sleep deprived myself, having been staying up with Older Daughter as her temperature remained resolutely at 39.5C through the nights, and could not even get Waif's date of birth correct at the hospital so they took a while to locate her records. First I realised I had the date and month reversed, so corrected that (feeling a fool), then, when they still couldn't find her but "could" find a child with her name and birthday who was born in 1994, I realised I had given Older Daughter's year of birth. D'oh, it's just as well I don't intend to give anyone legal advice today.

The doctor on call sent Waif for a chest x-ray which disclosed a chest infection. The doctor also used some word meaning lumps of stuff in her lungs (I have forgotten what it was, perhaps "contusions" or somesuch). He has prescribed her 2 anti-biotics and said that she was borderline for IV antibiotics and so I was to bring her straight back if she deteriorated or failed to improve on the drugs. He said that she was malnourished and that is making her vulnerable to infections.

It is now 7.44am and I have mince pies in the oven which I am about to force feed the Waif (joke, I hope, but I will put her under pressure to finish them). The antibiotics might apparently give her a dodgy tummy so I am hoping all will stay within long enough to be digested.

At 9am I shall go to cash in the prescription. I will no longer go to our corner pharmacist after my experience picking up cough linctus for Older Daughter on Tuesday: the girl doing the dispensing there was clearly NOT a trained pharmacist. She is usually behind the counter taking payment. She is very sweet but her youth, lack of articulacy and dizziness betray she is not a pharmacist.

The qualificiation and registration certificate on display at the pharmacy is for an Indian man. I asked her whether she was a pharamacist and she said she was a "pharmacy technician" and was supervised by the pharmacist. The pharmacist was in a different room, 0ut of sight. I imagine she is quite competent but I would rather have someone with 5 years training dispensing my drugs and not some YTS student. She willingly and cheerfully held up the bottles she had used in proof of the fact that she had dispensed the right drugs. Obviously, I did not have time to check the concentrations without taking a rude amount of time so I held my tongue, smiled, and accepted the bottle. She was a nice girl but I threw the cough linctus away. It has not been unheard of for a pharmacist (a proper one, with qualifications and training) to question a doctor's prescription dose and to be able to give useful advice in tandem, so I shall go to the other pharmacy nearby for Waif's antibiotics.

Oh, I weighed Waif yesterday and she has dropped to 35.5kg :-( :-(

PS It was "lung consolidation" not contusion.

Wednesday, 23 September 2009

weight; height thingie stats

I have been surfing and reckon this is the age: weight: height thingie on which scale Waif is 77%.

In other words, she is 77% of the weight she should be for her age and height.

I have not yet found an actual chart on which I can check the measurements myself so working backwards, her ideal weight is 100/77 x current weight = 47kg.

Hmmm... Waif and I are aiming at 42-44kg. That represents about 90% of a "normal" weight for her age and height, and is well above the 85% danger cut-off.

40kg is her 85% level. This is the level above which she would not be automatically diagnosed as having an ED. Funnily enough, my initial instinct to tell her that if she fell below 38kg then I would be taking her to the doctor, was about right, especially as she may have been 1 cm shorter in the late Spring.

fall out

Waif is still in bed, 36 hours after her Maudsley visit.

Yesterday she had a sore throat and headache, no doubt due to her continuous crying :-( Today, she has a tummy ache.

She is reluctant to go in to school because she says that she won't learn anything and will just be miserable as she is in pain. That seems like a reasonable argument. I will, however, put her under gentle but firm pressure to head back to school tomorrow as I don't want her to miss so much school that catching up will put her under stress. I am not sure whether her pains today are viral, but at least her mood is improved.

I took her to her GP yesterday, as suggested by the Maudsley doctor. The GP agreed that Waif has a lump on her neck, but is certain that it is a harmless goitre - a swollen thyroid gland that is not uncommon in puberty. Her gland is not one that is overactive as her blood tests were normal so he said not to worry about the lump as long as it remains soft and mobile.

I wonder if it is affecting her swallowing.

The Maudsley psychiatrist kindly phoned me back. Waif is begging me not to take her back there: she says that she is now eating sensibly (she is, and already looks healthier after 10 days) and wants me to promise that if she puts on weight then I will cancel future appointments.

I asked the psychiatrist whether perhaps I was inadvertantly medicalising a normal part of Waif's growing up. He agreed that her questionnaires showed none of the markers of Anorexia Nervosa apart from the weight loss: she is not depressed, not anxious, not concerned about body image etc. This convinces them that she must be hiding things, or else suffers from EDNOS (Eating disorder, not otherwise specified)....hmmm...she doesn't seem to fit into the Wikipedia categories.

I am worried that she may have some sort of underlying wasting physical condition that is not being explored because a psychiatrist is instead looking for some kind of deep psychological trauma. Waif is in a Catch 22 situation because they won't believe her when she tells them there isn't one. Waif reckons they are 'giving' her emotional trauma by trying to put words into her mouth eg the psychiatrist asked her which chocolate bars she liked, and she said that she didn't really eat chocolate bars. He then pressed her to name a favourite so she said Mars bars (I have never known her eat one). Then later in the interview, the family therapist (nicely, and with a smile) suggested Waif was fibbing by saying that she (the FT) doubted Waif really ate Mars bars as she claimed.

Hmmm... although I quite liked the family therapist who seemed firm, experienced and direct, I was not sure about her intellect. She told Waif that the criterion for anorexia was a weight:height ratio (or some such term) of 84% or less, and Waif's was 77%. She then sought to explain this by saying:

"So, Waif, do you understand? That means that if we took one hundred girls your height and age and lined them up, then..then....." She petered out, confused.

"then you would be the first in line because you are in the first centile" I helped out after an embarrassing silence, realising that the FT was confusing centiles with her weight:height ratio thingie (which scale I must track down...I shall ask my friend who is the borough child psychiatrist and also treats anorexics).

Even non-numeric husband said afterwards he thought the FT was daft at this point as he couldn't imagine why you would line up 100 children where the fattest would be "normal", and the thinnest would be weightless, and Waif 23rd in the line, as FT appeared to be doing. I was surprised as I would expect an ED specialist to be familiar with the various types of scale and measurement. Fortnunately, the psychiatrist said that it would be he alone who conducted the future consultations. Perhaps they have decided we are too functional to need a Family Therapist.

Sigh, I hope I don't sound ungrateful. It is a marvellous thing to have access to the best service in the world for Eating Disorders, I just hope it is the right place for Waif. Half of me feels that we should be able to sort this out intra-family but the logical part of me knows that I was failing on that front as Waif has lost 10% of her body weight SINCE I have been trying to encourage her to eat more.

Ho hum, I have agreed that Waif should attend her next appointment at the Maudsley on Friday next week. This is the last day that I have on sabbatical, and I will be back at work the week after, so future visits will be very awkward unless they are on Mondays (my day off).

Meantime, I am advertising locally for someone to be home after school to cook and supervise the girls' supper.

Tuesday, 22 September 2009

How The Maudsley went

Waif had her first visit yesterday to the Eating Disorders Clinic at The Maudsley.

It is a beautiful centre - very clean, state-of-the art and professional. Waif had a whole team devoted to her for 3 hours: a psychiatrist, a family therapist, a psychologist and an assistant psychologist.

Waif, hubby and I were interviewed by the psychiatrist and handed in our questionnaires. There were cameras and sound equipment in the room and the rest of the team watched us on screens. That was unnerving but we quite soon grew used to it .

Waif coped seemingly well with all sorts of questions: she was consistent in saying that she was happy, thought she was too thin and liked food and eating. Her questionnaire scored ZERO for eating and any other mental disorder. And yet, and yet, her weight for height (or some such term) is 77%, and anything below 84% is considered anorexic. Waif was upset by the therapist suggesting that perhaps Waif was keeping things back.

On her self appraisal quality of life study, Waif said that she had not felt miserable on a single day in the last 28 days, had lots of friends and loved her family :-)

We were each asked at the start to say one thing that we liked in each other. Waif said that Hubby was fun, and then said she couldn't answer for me because she liked everything and I was perfect. Sigh, being a love fest sort, and unoriginal, and because it is true, I said I felt the same about her: she is adorable, hard-working, empathetic, kind, funny, interesting.... She also put that she is closest of all to older daughter. I told OD who was flattered and pleased :-) We are so lucky to have children that get on so well with one another, and always have.

The psychiatrist thought that Waif should have a scan for the lump on her neck. I have booked an appointment with the GP for this afternoon. Although unlikely, perhaps there is a purely physical reason for Waif's weight loss. She has certainly been eating well in my presence recently but only slowly gaining a kilo or two.

They sent us away with a meal plan and an appointment for next Friday.

So, all went seemingly well.

But the Waif has been in tears of despair and agony since we have returned - 17 hours of tears and misery. She was so happy before :-( Perhaps the Maudsley is a blind alley. Perhaps I am making a naturally thin child deeply self conscious and unhappy :-( I have called the psychiatrist just now to talk to him but they have two more new patients today and are very busy so there is no guarantee of a call back. I am not sure what I will say - I am tempted to float the idea of Waif not returning if she continues to eat well and put on weight, but first I want to know if her kind of reaction is normal or not.

Waif has also picked at her skin in the night so that she has raw patches along her arms and legs :-(

I am about to sit with her and watch a gentle Disney film with her wrapped in my arms and see if she feels better.

Thursday, 17 September 2009

Forms, forms and more forms

:-) The forms arrived from the Maudsley although not in time for me to post them back to arrive there before we do on Monday morning as Waif needs to add her tuppence worth tonight. They said I could just bring them on the day. I hope that doesn't matter.

I realise how lovely is the Waif. The questionnaires are several: one to see if she has OCD (nope), one to see if she is lacking social skills (nope), one to see if she worries unduly (nope) and one general one in which I note that she is great with people, does all her work beautifully, keeps her bedroom tidy, looks lovely, is caring, gets on with everyone in the family, is easy company, has never struggled at school and is never argumentative, doesn't have bad nightmares and has never seemed depressed, and never been bullied.

The only questions where I have anything to say is that she is scared of spiders, quite wants to change schools and often sleeps in my bed. Hmm....that last one being unusual at 13.

I am glad yet trepidatious that we are going on Monday. I have not yet consented to the hospital being in touch with the school because I first want to discuss that with Waif's care team. I don't want to create problems for Waif at school.

Disappointment

Waif was apparently having such a good week. Whilst she never ate much in front of me, she was taking in substantial snack for morning recreation (usually chicken soup), telling me that she was eating lunch and then eating a reasonable supper with pudding (even if only a single biscuit) in my presence. Yesterday, her older sister told me that she had seen Waif at lunchtime eating a fruit salad that had supposedly been her Tuesday snack, and not eating lunch. I realised that, like it or not, I needed to weigh Waif again and not purely wait for our first appointment at the Maudsley Hospital on Monday.

I was optimistic at the weigh-in this morning even though I was aware that this was all relying on her honesty, but immensely disappointed to discover that she has lost weight. Older Daughter thinks that Waif may have been dismayed last week at having put some weight on and was determined to take it off.

I am now going to insist that Waif eats more than a bowl of bran flakes for breakfast. Today I cooked scrambled eggs on toast with tomatoes, and Waif also ate a jelly. I was prepared to sit her ther until she finished even if it meant missing our 7.10am deadline for the school bus. Luckily, however, she ate it without complaint. I realise from reading message boards how fortunate we are that she isostensibly a very compliant child.

Hmmm...Waif suddenly announced to me in the car yesterday on the home from school run that she is a very good liar and that's why she never gets into trouble. Hmmm.......I wonder if she was telling me something and indirectly asking for some help.

Meanwhile our questionnaire from the Maudsley has not arrived. I telephoned on Tuesda morning and discovered that they had not sent it. They muttered something about the postal strike but I don't see why that had prevented them from posting it. THe lady said she would send it right away, first class. It didn't arrive yesterday. I shall wait for the morning post and then chase them again.

I asked my husband this morning whether he has yet read any of the links I have sent him on the Maudsley approach. He hasn't. I am not sure that he realises that this should be a priority for him. I anticipate Monday at the Maudsley will be a shock for him. And for me. I still hold onto the tenuous hope that they will tell us that it is all a big mistake and we should go home - Husband is right and she is simply naturally very thin and not abnormal at a BMI of 14.8.

Saturday, 12 September 2009

Heartbreaking

I followed Laura Collins' kind steer and went to read the messageboard at www.aroundthedinnertable.org.

This thread, about a ten year old girl and her desperate mother, is movingly heartbreaking :-(


My impression so far is that the UK system of health is better than that clearly prevailing in Australia- I may be lucky living nearby, but Waif had a referral straight through to the Maudsley and she is way off being as ill as poor Elleelephant's daughter.

I only wish I had any advice but am not yet at that stage as I know too little about approaches to ED. I am hoping to learn much more at the Maudsley, and am glad that I seem to have a headstart on the ED and hope to nip it in the bud. It must be terrifying to have a too too thin child simply refusing to eat.

Eating better

Waif seems to be eating very well at the moment, although often not in front of me so I am reserving judgment a little until I have some metrics.

She made herself a large hot chocolate topped with whipped cream and mini marshmallows at breakfast time and took it off to her room. She said yesterday that she had eaten chocolate muffins that she had made at a friends' house, and yet still ate supper and then she took bowls of ice cream down to the tv room for her and her friends.

Waif still looks stick thin but I am seriously hopeful that she must be gaining weight. Perhaps the incentive of an appointment with an eating disorders specialist in 10 days time has proved to be a spur.

I also surreptitiously checked her pulse as I have read that children suffering serious physical effects from anorexia have very low heart rates. Hers seemed fine (maybe 72 bpm).

My husband took her out to lunch today at Selfridges, prior to having her ears pierced. After a slight mishap (the waiter dropped her plate and there was a long wait for a second meal to arrive), she ate well apparently :-) - a whole chicken breast and all her mash. Older daughter chose her usual steak and chips.

When the Selfridges ear piercing plan was hatched a couple of days ago I was considering imposing some weight limit on the treat of ear piercing but didn't have the heart as she was so excited and, as noted above, eating so well.

Despite having been called on Monday afternoon by the Maudsley, I have not yet received written confirmation and the promised questionnaires. Perhaps the recent postal strike action is to blame. If nothing arrives by Tuesday, I shall phone the Maudsley and query the position.

Tuesday, 8 September 2009

Waif's blood results were fine.

I weighed her again yesterday and she came in at 36.5kg (clothed) so she has not lost weight in the last week or so which is good, and may even have put on some. I have put on 1.5kg what with all the biscuits in the house, to which only I succumb. That is not such a bad thing - some say I am thin (although within a normal range at 52kg and about the same height as Waif).

I had a call from the Eating Disorders Unit at the Maudsley Hospital yesterday. Waif is to come for a 2 hour initial assessment on Monday 21 September. This is brilliant news.

Ideally both I and my husband should attend too. My husband has put it in his diary and is hoping to come. As my sabbatical lasts until 1 October, and in any case I don't work Mondays, I am clear to go too.....I would have gone anyway even if it lost me my job....

Bless the National Health Service. Waif is to be seen by world specialists at no cost whatsoever to us. Whilst we are fortunate in that we would otherwise have paid, this gives me heart that no child need miss out merely because of lack of parental funds.

The lady on the phone said that there were a lot of forms to fill in, and questionnaires, both hard copy and on-line. She stressed that it was important to do this sooner rather than later so I plucked up all my courage and told Waif about the appointment. She was not happy but nor did she outright refuse to contemplate going. I told her that if she put on lots of weight between now and then, then they might simply send her away again. I am not sure I should have said that.

I am doubly fortunate in that the Maudsley Hospital is about 6 minutes drive from Waif's school so she should only miss three periods of school even for a 2 hour appointment.

Meanwhile, I have withdrawn consent for the school nurse to talk to Waif until I have taken specialist advice. From her messages, the nurse is acting more like the school's lawyer than their health care provider: her only goal is seemingly to assess what liability and risk there might be for the school in Waif's continued attendance. I mailed her thanking her for her concern and saying that if at any point she thought Wiaf too fragile to safely be at school then she should immediately let me know and I would get a formal medical opinion from her doctor. Meanwhile I asked if the school provided any kind of support as I had heard that other London day schools might, for instance, require certain children to eat lunch with the nurse so that their intake could be monitored. I have not heard back. I am not expecting a yes, unfortunately.

I still live in hope that the problem will simply disappear and prove to be a storm in a teacup.

Waif had a small piece of toast with a scraping of jam for breakfast today, crusts cut off. I made her a fresh orange juice into which I sneaked a teaspoon of sugar and I insisted she also drank that. She has taken in tomato soup in a thermos for her morning snack. I hope she doesn't decide instead that it is lunch. She is in the dance club after school today so needs some energy.

I am trying not to think about the impact on her teeth of all these unhealthy sugary foods that I am pushing her way.


Friday, 4 September 2009

blood results

Waif's blood results are normal. This is good, I guess, although a physical explanation for her weight loss would have been easier to tackle.

I now await the grinding of administrative wheels for her appointment at the Maudsley. It could be a couple of weeks away......

second day of term, slipping already :-(

I put a croissant and a hot chocolate on the table for Waif at 6.30 this morning. She announced that she no longer likes hot chocolate and wanted a bowl of bran flakes not a croissant. I told her that she had to eat TWO things for breakfast, not one, so she said she would have the bran flakes and an apple juice. I saw her pouring a medium small bowl of flakes and then carefully replace half of them back in the box. When I turned around she put her apple juice carton into the recycling. There was something about it that made me go and check. The carton was still full. I called her back to the table and insisted that she drank it and told her that she relaly must eat TWICE as much as she is currently doing.

I asked Waif what snack she would like to take in for morning recreation. She said that she had already packed biscuits in her bag. Only yesterday she told me that I had to trust her so I did. But older daughter called me into the other room and told me that Waif had packed only ONE small biscuit. I checked. It was true. I put two more in and told Waif that she must eat them AND eat lunch. SIgh, I am not sure if the biscuits are a good idea. I believe that sometimes when Waif eats smething she perceives as a "bad" food (biscuits, chocolate, sweets, pudding) then she tries to make up for it later by skipping a meal. She would be better off with the meals. Next week I shall send her off with healthier snacks eg tuna sandwich or cheese.

Waif has a rollerblading party after school today. I have not yet got to the stage where I am banning her from going out but am seriously worried that she will not eat any food today beyond the bowl of bran flakes. I am going to weigh her on her return (yes, I know it has only been 2 days since I last weighed her) and if she has lost a kg or more since Wednesday then I plan to ground her from after school activities next week so that at least I can supervise a snack at 5pm and supper at 7.30pm.