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

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lovemum

I asked these questions of an ED Unit that has been mentioned for my daughter - she already spent 8 months in one and now they want to put her in another - Im trying to get her home but its been complicated due to suicidal and serious SH incidents
anyway just looking at their replies make my heart sink. MAkes me think they won't be any different to the first lot - they will keep her where she is and in this tortured state...  HAVE TO GET HER OUT !! WHY WONT THEY LISTEN

* Exactly what information do you use in order to set a weight band for your pediatric patients?  please give me all the details - I need to know exactly how you do this. I understand weight for height charts and age related BMI calculations and I would like to know your technical process for establishing bands

 

Setting an appropriate individualised healthy weight range during adolescence is more complex than with adults, and we describe individualised healthy weight range in terms of percentage expected BMI for age (using a computer program to compare with normal centile charts for this for girls), so the actual healthy weight range at this age increases with both increases in height, and increases in age (up to the age of 18). We need to take into account whether menstruation has already begun (whether or not this has subsequently ceased with weight loss). At this age if there is primary amenorrhoea (i.e. never previously had a menstrual period) we would aim for a healthy weight range of 95-100% expected BMI for age (i.e. the slimmer half of the normal range of weight for that age and height). If menstruation has previously begun but has ceased with weight loss then we would use a pelvic ultrasound scan once weight has been restored to 90% expected BMI for age to determine the level of oestrogenisation of the uterus and ovaries at that stage, which allows us to predict at what percent expected BMI range oestrogen levels are likely to return to normal. This is a highly individualised and important measure of restoration of functionally normal weight, particularly with regards to future health/quality of life in terms of both bone mineral density/osteoporosis risk and future fertility.

 

 

* to what extent do you work with families to determine healthy weight range bands and to what extent are those decisions made without family input?

 

We work closely with families to ensure the best possible outcome, particularly as all the research evidence and clinical experience points to family involvement in treatment at this age being the most powerful single factor in determining prognosis. To achieve this we and parents need to respect our particular areas of expertise, for example that parents know their child as individuals in much greater detail than the professional part of the team does, and have a unique and uniquely powerful role in their child's life now and the future, while the professional team have a depth of specialist professional knowledge of eating disorders and their treatment, including the many issues around identifying an individualised healthy weight range that will support an overall positive recovery in every sense. While it is important that we discuss and come to an agreement about important aspects of treatment and care, we would expect parents to support medical recommendations based on our expertise, just as we would be guided by parents on decisions within the parental domain, and would work closely together to discover with parents how best they can support their child as they move from hospital back to home while continuing their recovery (bringing together their expertise and ours to learn and develop potentially new strategies in order to achieve this).

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scaredmom
Lovemum, 
I just wish to understand your concerns a bit more in depth. 
Reading what they have written back to you sounds very scripted and what they would have to write down-legally and they do seem to wish to work with the family. I am not sure what I am missing. Do you feel that you should meet with them in person and then dig further into their protocols? That way if there are other issues you can flush them out guided by how they respond to you and their body language and tone.


When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
"i.e. the slimmer half of the normal range of weight for that age and height"

Is it that you are concerned about?
Keep feeding. There is light at the end of the tunnel.
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lovemum
HI Tina72 and scaredmom - thank you for your replies. 
To be clearer what scares me is that these places do not look at personal growth charts - they all use generic weight for height - I need someone to believe me that 50th percentile is not enough for my girl. She was tracking 75th as a baby and up to age 7. But they don;t listen and they are too scared of her suicide threats to consider pushing higher. And they are saying she is too risky to come home. And she doesn;t want to come home. She wants to stay in hospital. I just feel like we are caught in a vicious circle. Every time discharge is discussed we get the anxiety and the SH and the suicide threats. So they keep her there to keep her safe (doesn;t always work - she has SH'ed in hospital too - they are all doing it) But then we get further away from getting her out and meanwhile her BMI is just 18.5
So they want to look at other IP care as she's so risky and AN so strong - but I feel like it will be no different. Maintenance mealplans and only keeping her safe by constant supervision. When can this move on? Its so awful I can't even express
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scaredmom

Yes I understand your concerns better, thanks
I also noted in their note to you that they say that they  individualise the weight and I can understand why you would be quite cautious ie the lower "healthy" BMI part. I would really push to discuss with them in person to be honest. Hard to know what their stance will be when you challenge them face to face and I would suggest arming yourself with evidence to give them about setting target weights to low. 
I am sorry it is so difficult right now. I do hope that they are willing to work WITH you and not against, for your child. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mamaroo
I can understand your concerns. We had the same, my d was a big baby and was always taller than her class mates. I even gave them a weight and height chart with her curve highlighted on it and they just filed it somewhere at the back of her file. Looking again at their response to the last question, it seems they didn't even read your question properly. I'll keep on asking questions, maybe go and meet with them in person and take your charts with you. 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
I would do the same, meet them in person, take charts with you and discuss why you think she needs a higher weight and that maintenance meal plan is no good idea for a still growing child. And that many kids refuse to go home because of anxiety and that it does not help to give in to that anxiety because it is not rational. Write down what is discussed there and if they do not listen or tell you your wrong make a written complaint to the team and the responsable persons so it is in her papers.

Maybe it helps to contact Eva Musby and ask her for help? She knows a lot of people in UK and maybe a phone call from her with the team makes a difference?
Keep feeding. There is light at the end of the tunnel.
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Alethea
Lovemum, It sounds so frustrating but other areas to consider: are you confident in how safe they can keep her considering suicidal/sh issues? It is no joke being on 24 hour watch at home for weeks on end. Is your d engaging with her therapist? Other patients? Activities? If she is on wt maintenance, presumably they are working on preparing meals, food shopping, learning to be non ip. Bmi 18 is far too low and it is typical of nhs to be content with that, but in the meantime- she is safe, and maintaining and hopefully having good therapy. This may be plateau-ing before the next push fighting the illness. We had 3 long ips where she  lost wt and was able to do what she liked. It was terrifying and it terrified her and made her want to come home and work with me. It was like a waiting game where I showed her I was never going to let go and we wore that an out in the end. I did go to pals and through them, higher in nhs hierarchy to get things changed in her care. It was  exhausting on top of all the worry. They don't like any threat of bad press.
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