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.

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...

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.