F.E.A.S.T's Around The Dinner Table forum

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mrh74
Hi,

I posted in June about my daughter's possible eating disorder and the early intervention mental health unit asking her school to help.  

Things have moved on since then and I would be very grateful if anyone can answer a few questions please.

Fortunately, my daughter's then school were brilliant, acknowledged that they were not trained to intervene but gave us as much help and support as possible in getting my daughter a referral to CAMHS.

My daughter was assessed by CAMHS at the end of June and diagnosed with an emerging eating disorder.  A referral was made by CAMHS to the local eating disorders team but they couldn't accept her as she was not underweight (94% height for weight, 146 cm and 36.5 kg).  Since then she has been on the waiting list to be seen by a CAMHS therapist.

We managed to maintain her weight over the summer and her anxiety seemed to decrease significantly.  She started secondary school in September and absolutely loves it - she is much happier at school than she has been for years.  BUT, since starting at the school she has lost weight and is now 149 cm and 34kg.  We think it's because she is doing a lot more and needs to increase her daily intake - this is where we have struggled.  She can't cope with being asked to eat more and the weight related anxiety has returned.  

CAMHS have urgently referred her again to the eating disorders team and we have a meeting with them tomorrow.  She has had physical health checks and blood tests and they were all fine but I am nervous about the appointment tomorrow.  Does anyone know at what point they admit children as in-patients in the UK, or am I worrying unnecessarily about that?  This all seems to have become very serious suddenly and it's thrown me a bit, especially as she is finally happy at school.

Sorry for the novel, if you have got this far, thank you for reading!

Maria
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Ping_Pong
Hi, Maria,

Sorry that you find yourself here, Maria, but I hope you find similar support and help as I have done over the last year. It sounds as if you are where we were about this time last year - ds are similar ages/height/weight etc at diagnosis. We were referred to our local EDICT team and put on Family Based Treatment at home. They told us that they would be reluctant to send her as an inpatient as a first line of treatment as they hoped FBT would go the trick. Perhaps they might recommend a similar route for your d??

The consultant pulled no punches when she told us what was required. She recommended a book (Lock and le Grange) and we couldn't get to the practical bit about meal support quick enough when we started refeeding! Discovered there wasn't an effective chapter on it anyway (good for other things, though) and turned to Eva Musby's book instead ('Anorexia and Other Eating Didorders'). Get it. And come back to this forum for support, ideas and advice.

We certainly find that when d's weight drops for height, all the ED anxieties return - just as you have found too.

Will be thinking of you tomorrow for your meeting. Keep us posted...

Chinstrap.
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mrh74
Thank you so much Chinstrap - I hope that's what they recommend too.  I will get the Eva Musby book - I've read the Lock and le Grange book.  It's little practical things that trip us up, like how to make sure she eats enough whilst she's at school.  I can log into the system to see what she has "bought" for her school lunch and snack but it doesn't tell me whether she's eaten it or how big the portion sizes are! 


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Ping_Pong
Ha! Know that feeling!
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mjkz
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It's little practical things that trip us up, like how to make sure she eats enough whilst she's at school.  I can log into the system to see what she has "bought" for her school lunch and snack but it doesn't tell me whether she's eaten it or how big the portion sizes are!


Can you have her eat with a teacher or school nurse or meet her for lunch to make sure she is eating?  I know many parents here have had to do that to make sure that their kids are eating at school.  I certainly did back when it wasn't even heard of to do it and even in college I still met with my daughter so I could keep tabs on whether or not calories were going in and how many.  It didn't make me very popular with my daughter but it was the only way to make sure she was actually eating.
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NELLY_UK
Its great she loves school that gives you some leverage. If she doesnt eat a healthy breakfast then she stays home until it goes in. She will need supervisig over lunch either at school or in the car with a parent and if lunch doesnt go in she doesnt go to school until it does. It may be awkward but if you can hit this now at home and be clear there s no room for an ed in her life then great. If you get resistance its because you have soething to be concerned about.
Good luck. Life stops until she eats and yours will too. But hit it hard and fast and you will win.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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mrh74
Thank you all - fortunately I work near to the school so lunch in the car would be do-able.

The appointment today went well- the eating disorders team have now accepted the referral and have booked her in for her first out-patient appointment next week. I'm glad to be finally off waiting lists!

Thank you for your replies,

Maria
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Ping_Pong
That's good news, Maria!  Is it FBT that's being recommended?
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cbmum
Hi Maria, glad your appointment went well.
We were referred in June, and I'm sorry to hear you didn't get your referral then because your D hadn't lost enough weight.  There didn't seem to be any question for our D, although she was making herself sick so maybe that was a factor.
We were also recommended outpatient FBT.  Eva Musby's book has been really helpful for me, in terms of understanding what's going on, what to expect, and giving some tools on how to deal with resistance.
I still can't get on with the "feelings and communication" parts of her book, or indeed any of the books I've been recommended (Janet Treasure's being another).  We were basically recommended to read Eva Musby by our family therapist, and left to get on with it - or that's what it feels like!
I hope things go well for you; keep posting here and reading, there's so much wisdom and advice from people who have gone through what we're going through.
D, b.2002, diagnosed with depression, anxiety and EDNOS Spring/Summer 2016.
Some restricting, some vomiting, some self-harm for good measure.
FBT, CBT, now on 3rd type of anti-d's.
D is "cured" of the ED but still on low dose of anti-d's. Will I ever be cured?

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Ping_Pong
Know what you mean about the feelings and communications part of the book, cbmum - just not quite my thing either. But I guess we take from it the bits we find useful for our situations, just as we do on forums like this one.

During the later stages of FBT, our clinicians were very much of the 'you're doing the right thing' and 'you know what to do' whenever H and I came to our own conclusion/decision about what to do next, which we didn't always find that helpful. We felt we wanted more practical advice, I guess, as we knew we still had a way to go post-WR with ED behaviours. However, where they were useful was to reinforce things we wanted our D to do that week. Examples might be to do the school work that had been sent home, or to have an extra snack each day etc etc. Interestingly, having just been referred back to the EDICT team after a relapse, the team and ourselves are being more careful to present decisions and so on as coming from us rather than them. This is to help empower us so that once D is discharged again, she will know that we know what to do. After she was last discharged, we had a few comments along the lines of, 'What do you know? You're not ED specialists?' The answer is... an awful lot more than this time last year, for sure!
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mrh74
I'm not sure whether it's FBT or something else- I have been asked to attend as well as my daughter (which I would want to do anyway)! They didn't ask about my husband or my son coming, not sure if that's relevant! It's all quite scary tbh - they asked me to book an ecg with the doctor- I couldn't get one for a couple of weeks so they said to take her to a&e if she feels breathless or unwell in the meantime. Given that she's anxious and feels breathless a lot, not sure what I should do! Does anyone have any advice on when you should go in as an emergency?

Thank you for reading!

Maria
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MarcellaUK
sorry for being slow with this reply - I think that if the ED team want your daughter to have an ECG then they should contact the GP's surgery and arrange one right away - hopefully your d's heart will be OK - my d's was even when she was very unwell after a relapse, but it needs checking. The doctor may not be aware of the urgency of the problem and it's quite right, they may well not have a routine appointment for a couple of weeks or more, but if the professionals from the ED team explain what they want and why then hopefully the surgery can get it sorted asap. These are the kind of medical tests that they should be asking for http://www.yorkgpvts.co.uk/downloads/kings_college_medical_guidelines.pdf
Fiona Marcella UK
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Ping_Pong
Our EDICT were pretty helpful about what they class as an emergency. They suggested certainly no more than 24 hrs without fluids, and about 48 hrs without food, but to act sooner rather than later. They were also very specific about which hospital to go through - they would expect us to go to the full A&E unit in the nearby city rather than our local urgent care centre in our town. Apparently the city hospital has exc links into the EDICT team and would keep them in the loop. Our team also said we could call them for advice, presumably during the working day, and that they may be able to get us fed straight into the Paeds ward for a check up. If it were out of hours, we'd probs call 111 for advice.

I wonder if this is something you could discuss at your next meeting?

I know I've seen other stuff on this forum about emergencies too, so have a hunt around.

Hope that helps, Maria!
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mrh74
Thank you - that's all really helpful.....[smile]
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Sotired
I am not sure if you have written whether your d is a purger or not-if she is then she really needs that ecg as soon as you can get her to your local a&e.
If your d is breathless, struggling to breathe, moving slowly like a very old person-those were the classic signs for my d -a purger and full restrictor-that she had to go to get checked out that day.it meant she was very low on potassium-essential for your heart,but easily lost through purging-and also very dehydrated.
These signs mean it is time to act that very day-because they are life threatening.
I am sorry if this seems a bit full on but we still deal with something like this and each time it puts strain on my ds heart.i would always rather get it checked (but I do live in a country with free-ish healthcare so that changes things too.)
Anyway, that's my advice
Sotired42
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mrh74
Thank you, that's all really helpful.  I have just received a copy of the write up of the assessment which has been sent to our GP and it's all becoming a bit clearer.  This site is so helpful as it has explained a lot of terminology in the letter!  She's not a purger and all of her tests were fine, so I think she's relatively low risk at the moment - green on the Marsipan scale (another one to look up later)!
 
They've recommended weekly appointments with the eating disorders nurse initially with CAMHS to provide treatment for anxiety and family therapy if needed.  I'm assuming, Chinstrap, that this is the family therapy you were referring to....

I hope you are all doing ok and thank you again for your support - it is hugely helpful.....

Maria
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Penny31
mrh74 - you asked at what point someone with an ED is admitted to hospital, so I thought I'd try to answer. It really depends on your local team (ED and CAMHS), and also what else is going on in your child's life. My D has never been particularly massively underweight, but her restrictive eating/purging together with self-harming, school refusal, overdosing on pills and general disturbed behaviour has been enough to have her admitted, twice. Both times she would have been sectioned had she not in the end agreed to go 'voluntarily'. It sounds like your daughter isn't doing any of those things, so I doubt anyone will be talking about inpatient admission. Inpatient admission isn't the worst that can happen though. The first time my daughter went I breathed a sigh of relief, as it meant that she would be safe and looked after, and in the hands of people who would do their best to help.
I really hope things go well for you now that your daughter has been referred to the ED team, and that you get the support you need.
14 year-old D diagnosed with AN in March 2016. Episodes of self-harming, anxiety, severe depression. Waiting for a CAMHS assessment to see if there's an additional diagnosis. 
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