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deenl

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Reply with quote  #26 
Thinking of you,

D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

Swedish proverb: Love me when I least deserve it because that's when I need it most.

We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.

If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )

Torie

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Reply with quote  #27 
Quote:
Originally Posted by Sotired
I had a horrible feeling that that kg was waterloading-my d was a pro at this, I never knew how she managed it but she always did.if the same thing happens again-and it almost certainly will(once they start this trick again they stay with it) then just tell her that you are going to take a kg off for any weight gain to allow for water loading.our ed doc could tell pretty quickly,just got d to lie down and palpaited tummy and knew straight off about the water loading. I'm sorry hon,it devasting to have loopholes still open that in all likelihood you can do nothing about.(though if you can that's excellent). A big hug your way,


There's a simple test they can do to see if the urine is more dilute than expected. They just dip the stick in the urine sample, I think. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
sk8r31

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Reply with quote  #28 
Sending warm, strong thoughts to you.

Hugs,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Doitagain

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Reply with quote  #29 
I have heard you were on national radio RTE this afternoon! I also heard you came over brilliantly ! National radio !!! Well done you..so proud of you x
floating

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Reply with quote  #30 
Hi was on RTE today show on tv but not sure if you can fast forward but on only about 5 mins, not great but at end of show
Also rte drive radio at 4.30pm but not heard it myself 

Daughter in very bad state mentally

Fully compliant 2850 calories.......care stepped up
fully watched in shower and loo
Arms length at all times including meals
full bed rest
Water measured intake and out

BUT lost kilo,,, not sure what loophole is

Psychiatrist called me to tell ME(including me in her care voluntarily has never happened!!!) D is going to acute medical side for NG fitting in morning and Bolus feeding will commence and fluid as for some reason she is drinking but super thirsty?? not sure why at present, Anyone heard of this?

D is extremely opposed to NG so may need restraining..............o lord the evil illness, more trauma for her. She stopped eating this afternoon in protest to NG 

Daughter water has been tested when she waterloaded 4kg and showed normal!!!! so please do not go by this guys

Thanks for messages xxxx





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pipes2406

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Reply with quote  #31 
Oh Floating - sending you such big hugs! This illness is so devastating both for your d and for you. Persevere with that ng - my d has gained 3kg in 6 weeks - small baby steps, but in the right direction.

I sincerely hope that tomorrow isn't too traumatic for her xxx
floating

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Reply with quote  #32 
will do, D never has metabolism issues so gains fast on Ng usually 1.5-2kg week but they always taken it out after a week and back to square on.........d negotiates it out as eats but it is the damn ED behaviours then,,,,

Great your child has put 3kg on, yipee.........fab news. Just keep going you will get there xx

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floating

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Reply with quote  #33 
Just listened to radio and a lady from bodywhys came on after and is quite supportive
Maybe someone can post link on here for few hours and delete.......as I am not very techno!!!

xxx

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Foodsupport_AUS

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Reply with quote  #34 
Great news that they are fitting NG tube for bolus feeding. Clearly she needs more than 2850 per day, though I agree there are probably some loopholes somewhere. Also hoping they see that no matter what she needs the increased intake for a prolonged time, no matter how they get it in there. As you know some kids are refed on 5000 - 6000 per day, all food. 

As for water loading, we had this as a problem too. It cannot always be detected on urine test as it depends how soon prior to getting weighed there is fluid intake. Yet another reason why the close monitoring is necessary. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
floating

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Reply with quote  #35 
Thanks foodsupport I have told them that they often require a larger amount.........
And said this is evidence based......by parents who has first based knowledge!!!

Reassured it is Bolus feeding as she has messed with feed prior

Yes anyway in is just fine by all us us eh?? just get that nutrition in and stabilise........as D eats no problem,,,,,not enough but eats so this can continue after

Waterloading is a huge pain for us.......grrr...scary and dangerous

Thanks for message x

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iHateED

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Reply with quote  #36 
I think your biggest loophole is only 2850 calories.  In my D's case, she needed over 3000 just to not lose weight and over 3500-4000 to put on a pound a week.  All of her internal organs are working so hard at keeping your D warm and to protect her brain..... this takes loads of calories just to keep up.   So glad to hear they will ng tube in the morning.  Sending prayers that they go through with it and that your D stays calm and it isn't too traumatic for her.
iHateED

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Reply with quote  #37 
Radio interview--

http://www.rte.ie/radio/utils/radioplayer/rteradioweb.html#!rii=b9%5F10559349%5F83%5F19%2D04%2D2016%5F

Starts at 01:12:10

Great job again, you are so strong.
deenl

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Reply with quote  #38 
Hi floating,

I am obviously not a doctor so I am only copying what is in Give food a chance book by Julie O'Toole of the Kartini Clinic. She is talking about the physical effects of starvation observed in the participants of the Minnesota Starvation Study.

'Increased relative hydration: Psychogenic polydipsia (over drinking of water) was observed in the study participants (as we see it today in anorexia nervosa), with some men drinking 15 cups of coffee a day. Even apart from this extreme ingestion, starvation is also well known to increase the relative hydration of the whole body. Large amounts of water can be stored in the form of obvious edema, as well as retained throughout many tissues in a way that will not cause detectable edema of the skin. Diuresis (copious urination) during re-feeding is therefore common.'

At least it might be something to discuss with the doctors.

Wishing you all the very best, you are a trojan.

D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

Swedish proverb: Love me when I least deserve it because that's when I need it most.

We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.

If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )

floating

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Reply with quote  #39 
great info.........thanks Deenl........ will discuss with medical side xx

Toothfairy thanks for support

xx

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floating

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Reply with quote  #40 
Ng in and no problems, very calm and now on the medical unit

BUT major issue
Daughter got super anxious about moving to uk for treatment last year due to not wanting to be the fattest girl in the specialised unit and the wait over the 2 weeks causing major problems and restriction and arrived very ill

Well I asked psychiatrist not to tell her an application is being made as she will restrict and needs to go TODAY in her head as will get anxious about gaining weight before she goes

Well he told her and she has been terrible ever since and saying if they are fattening her up she now does not want to go and told him she will not go. Instead of understanding it is ED talk/behaviour he is rolling with it and told her she does not have to go

Two doctors on medical side said it did not work last time to her and they will get her to a healthy weight and she can go at BMI 15 and she can forget about uk

This is playing right into their hands and they are rolling with it

Nightmare............after all our hard work

Went to visit and D said to me in front of special I need to go to UK  now I cannot wait for 4 weeks on NG getting fat so I am not going
I just said ok

Then suddenly she said to special from psych ward I want a piece of paper as I want to tell psycho I am super anxious waiting and want to definitely go to the UK.....just do not want to wait

Please God they do not hinder any progress we have made

Worse thing is there is a legal issue going on regarding a 16 year old in uk for treatment at the moment as she is WR and very mentally unwell......grrrr

xxx 



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deenl

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Reply with quote  #41 
Ah, dang.

It's a constant roller coaster [frown] but at least there are ups as well. Hope the ng tube works out.

Hey, and the legal issue could work out in favour of the poor thing with the ED over in the UK.

Mind you,
D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

Swedish proverb: Love me when I least deserve it because that's when I need it most.

We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.

If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )

iHateED

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Reply with quote  #42 
Oh shame on those professionals for not knowing it is the ED talking, and shame on the psych for telling your D.  Maybe they are telling her she won't have to go just to ease her mind but will still work on the transfer and not mention it until the day of the transfer?   But great news on the ng tube.  Will she still eat food plus the tube or now just the tube?  It would be great if she can still eat for more calories.   Sending you hugs and prayers.
K63

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Reply with quote  #43 
Hi Floating, hope NG feeding is going well and that d isn't concentrating on what psychiatrist said yesterday. It will take time and nutrition going in for her mental state to improve it's very slow. Hope you can take some time to rest yourself you must be exhausted from all the pressure on you to get care for her, something no one should have to do to save the life of their child.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
floating

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Reply with quote  #44 
Thanks guys

Great visit with daughter

So relaxed today. Ng feeding and 95% fat shots doing trick!!!
She is happier to be out of the single room in psych hospital and on the medical ward
On 1-1 special as usual and having input and output fluid measured
Lots of vitamins and tests and I feel better that she is safer under proper medical consultants
As on psych ward just junior doctor 5 mins a day

Long may it last........just NG feeding for a week, no oral food

Hopefully she will be transferred and we get a chance xxx

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sunnyday

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Reply with quote  #45 

What encouraging news!  So happy you and your d are having a better day today.  Sounds like somebody starting paying some more attention to your situation. [smile]  Too bad it took you to educate everybody.  Indeed, long may it last....hope you can get some much needed rest knowing your d is getting better medical attention. [smile]


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Daughter diagnosed 2010 (9th grade) with AN/Binge/Purge.  D. had brewing ED thoughts as early as 4th grade. Constant battle with ED from 2010-present.  Co-morbid anxiety & depression & suicidal thoughts & self-harm.  Most recently in intense DBT/ED program outpatient . Weight restored but not happy about it.
floating

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Reply with quote  #46 
thanks sunnyday

was great visit, kisses and cuddles, bless

specials are from psych ward and she has just fell asleep, D just sent pic. The nurse is only 4 hours into the 12 hour shift, fecksake and D on NG..............crazy but hopefully D nods off too xx


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ooKoo

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Reply with quote  #47 
Quote:
Originally Posted by floating
thanks sunnyday

was great visit, kisses and cuddles, bless

specials are from psych ward and she has just fell asleep, D just sent pic. The nurse is only 4 hours into the 12 hour shift, fecksake and D on NG..............crazy but hopefully D nods off too xx



I hope she gets a really good nights sleep. Your D, I mean. Not the Nurse....in fact, I hope the nurse wakes up with a crick in her neck, for goodness sake.

Sound positive, Floating, so glad your visit went well. X

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UK - South East

17.5 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions.
2017: Currently attending CAMHS CBT. WR, at college, living life to the max.

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
deenl

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Reply with quote  #48 
Hi floating,

So glad you had a good visit. We know it's still unlikely to remain 100% so but,oh God, those moments are soooooo good for our souls. For you, your daughter and the rest of the family, I hope those moments and good visits become more and more frequent.

Wishing you guys continued good things,
D

PS I hope that photo has been sent on to the management.

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

Swedish proverb: Love me when I least deserve it because that's when I need it most.

We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.

If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )

MumTo2UK

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Reply with quote  #49 
Some good news at last!! I pray they keep it going this time flaoting and that your D gets the transfer she so badly needs. xx
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Mum of 17 year old daughter with AN seeking guidance
Sotired

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Reply with quote  #50 
So happy to hear the good news about the Ng feed and bolus.thank god that part is happening.shame you can't ring the watcher and just shout 'wake up!'.
My d once had one that spouted bible verses at her and told her if she just believed in God she would be saved....why didn't I think I of that?never mind that at that time I had plenty of people praying for her!really upset my d in any case so I requested we not have that watch again.my favourite was a former anorexic-she didn't have to be told what to watch out for and the kids couldn't slip anything past her as she too knew all the tricks[wink]

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