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casc Show full post »
casc
Bugger but thanks. My GP is very good and I'm sure he'd do it if I took her in. He was an ED Dr so could possibly do them but not in a GP setting. I wouldn't want it for home use just as a back up when she refused meals as I'm sure they'd only have to do it once and she'd get the message and as she has a fear of vomiting she would gag which would be enough for her never to end up in a position of having to have it done again.
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Sotired
Oddly it's not usually doctors that do it-not even ed doctors-its done by nurses.and you want nurses who have done it before because it's not a great process for a kid to go through the first time.
And he would have to have access to an X-ray machine.and then if you pulled it out after the bolus feed, if your d then refused to at the next meal it would have to be reinserted.it must be done in a hospital setting.
My d has had nasal gastric feeding for a while now and the replacing of the tube is always done in hospital.
You might have success instead if you took the meal replacement with you to the doctors and she had to eat it in front of him.
As he is an ed doctor he might have success getting her to eat?thats just a random thought...
Sotired42
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mjkz
Casc, they do in at a hospital for safety reasons. It would be devastating to end up with the NG down the windpipe rather than the esophagus and while not everyone does X-rays to check (at least over here) it is the safest way.

It doesn't sound like getting NG feedings is going to happen on your first visit to A&E but I would encourage you to keep taking her and to let the docs know exactly why you think having a NG would help.  I would also encourage you to talk to GP and see if he can arrange anything.  My ex-hubby is an ER doc so we had no issues with getting it arranged but we were very lucky.

It sound like you are going to have to work within what you can access and what you can do.  You got a lot of good suggestions here and also the thread about super resistors.  Let us know how it goes and what happened when you tried some of the suggestions.  We can help brain storm responses if you think it would be helpful.
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casc
Thank you. I wasn't quite sure who did it. It was just a thought that if my gp could that I'm pretty sure he would. Had a prem baby who had to have ng feeds so somewhat understand the process. I am an volunteer ambulance officer and have been for 8 years so have a few connections with Ed nurses but not even sure they can pull rank as it'd have to be signed off by a dr/paed.
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casc
I have my daughter back and she has continued to go downhill. I've looked at her weight chart and we are the same weight we were 10 weeks ago. Camhs have told me we are running out of time today and I've tried all the tactics, mantras to get her to eat since she's been home and it's been a no go. I've told camhs that I want her admitted to hospital. She is going to talk to REDS supervised and our paed. Am hopeful they agree. I said I think it'll be the turning point and that I would be looking at other options if they won't do it here.
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OneToughMomma
Thinking of you, casc.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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casc
OneToughMomma wrote:
Thinking of you, casc.

xoOTM


It was a no go neither REDS or Paed are prepared to admit her as there are no medical grounds to indicate an admission
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Sotired
Were you able to get proper obs done and bloods organised?i hate how our system and many others are like this.they wouldn't wait for cancer to get worse but anorexia apparently that approach is just fine.its not fine.
Sotired42
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casc
I'm going to make appointment with GP tomorrow will get full set of obs and some blood work done. Our psychologist is going to put my daughter in to see the paediatrician at the next camhs clinic
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casc
We've ended up in ED with the other half of town as she nearly fainted on kitchen floor after missing most of afternoon tea and dinner and no desert. I'm not hopeful that anything will come of it though
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mjkz
Casc, lose your cool only this time do it with your GP, your psychologist, the ED staff, etc.  Let them know in no uncertain terms you cannot take her home and keep her eating.  Make lots of noise and let them know what this is doing to you, how exhausted you are and that you are going downhill fast along with your daughter.  I took my daughter once to her team and told them I was not taking her home.  It was amazing how fast things moved after that when they all of a sudden had to find a place for her to go and keep her safe.
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casc
They ended up admitting her thank God. All bloods were clear but her orthostatic BP was not thanks Sotired I knew it wouldn't be hence the near fainting so made them check it. Now to see what they do with her. Dr's will go around at 9 so need to be up by then. It's 3am now and I haven't long been home. Gonna be a long day tomorrow
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mjkz
[thumb][thumb]
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mdmama
So glad to hear she is under medical care now. Thinking of you and your dear girl, and wishing you strength.

_______
D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
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Torie
Great job, getting them to admit your d!  So very glad to hear this good news. Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
Although I wish it hadn't had to come to your d fainting, I'm glad she is safe now.and no worries-I'm just happy that something I said helped. If you can push for NG-now is the time to do it.bit I also know just how exhausting it is doing late admissions so I hope you got some sleep.
After sleep, NG , longer admission and bloods.
I hope things start moving forward for you from this point.and that your team wake up and realise that this is on them-they could have done better and should have.do not let them off the hook for this-they should have had your d admitted well before this.
God luck hon,
Sotired42
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casc
They are discharging us. She can't stand without being dizzy and hasn't eaten for 24 hours but she doesn't meet their criteria to be in here. Her bloods where fine so that's it. Tried to get her admitted for respite but they asked her if she'd like to and she said no. So home we go. Guttered
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Sotired
What is their criteria?because she is sick and she hasn't eaten in 24 hours-at her weight this would mean admission to starship-this seems very fishy.her obs are obviously unstable if they have kept doing them orthostatically.if she can't stand and can't walk, I would be refusing to take her home.
Ring reds up in Auckland and ask craig Immelman to do a second opinion.
Tell them they are contravening the patients bill of rights.to send her home dehydrated and dizzy is unacceptable.step on toes.tell them you will consult the health and disability commission.find a way to make them keep her- she can't come home like this.
Sotired42
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Sotired
It is not done just on bloods-it's done on blood pressure, inability to eat, dehydration-they are being foolish and they know it.ask to speak to someone higher up.
Sotired42
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casc
It's not just peads it's our camhs psychologist as well. She has to eat her lunch before she goes home and she's struggling with that
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Sotired
If she hasn't eaten in 24hours it is almost criminally negligent to send her home.your camhs psychologist- ask her if she plans on coming home with you to make sure your d eats.if she will take obs every hour to make sure your d is not in danger of fainting.
We can and do get rubbish help in NZ- it's awful, but you have to fight the people who are supposed to be helping if they are being unhelpful.
Your d wasn't stable yesterday, she hasn't eaten -or drunk anything I imagine, but suddenly she's ok to go home?hospital is for sick people and your d is sick.
What is your therapist thinking?ask to have some time alone with her and xplain to her she is putting your ds health in physical danger and sending a message to the anorexia that it can do what it wants with no consequences.
I am starting to wonder if a group of us parents need to change how hospitals view anorexia.not you- you are in the middle of it.but others who have come through this.
What they want is negligent , they are practicing poor care.its ok to hold them accountable casc.make the therapist put it in writing and make it clear that if your d deteriorates, you will be showing that piece of paper to a solicitor.
I don't know how else to forcibly get them on board but it has to be done.
I'm so sorry casc, I know you are doing everything you can, but I would be looking into legal action if they persist with unsafe practice.
Sotired42
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casc
A bit of an update. We ended up going to CAMHS and get a proper weight done and she is now on the 75th percentile and has lost 3.3kgs in 1 week so now meets the criteria for admission. We are giving her until Thursday to gain weight of she will be admitted for refeeding. So I guess a good outcome in the end and has given me a LOT of leverage for her to eat as she does not want to be in there
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Sotired
Hang on.so she lost 3kg in a week and the team didn't put straight into hospital on NG feed? To lose that much weight in a week at your ds low weight already and then to expect her to gain it back quickly by herself shows a clear lack of education by your team.
And by Thursday?with what your ds anorexia has been doing I would very much doubt the team have done anything but set her up to fail, which seems counterproductive to the goal.hospital is not a punishment-it's a tool in the toolbox ,used to keep her healthy.the only way she could meet any target is to waterload or to binge and then purge or hide weights in her clothes.
Obviously they aren't expecting a 3kg weight gain in two days but realistically at your ds low weight, admission should be a priority to get Ng feeding done and for her to put weight on in a place where she can be monitored.
They need to stop presenting hospital as a bogeyman and accept it will be part of her treatment.do your best but don't threaten hospital-just present it as 'the next step' if your d cannot fight the voice in her head hard enough.i think it's better to talk about keeping her safe and helping her try -and accepting that this just may be part of the deal.
Do what you can casc, but don't let the team get away with anything anymore.question everything if you have to.push for the right thing for your d-you know her best and if you think hospital,then put all your energy into getting the team to put her there.make sure they are doing proper orthostatic obs when you see them on Thursday.
keep them firmly on task.if nothing has changed weight wise on thurs then make them stick to hospital as planned.

Sotired42
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casc
Thanks Sotired. They'll have to as she is on the critical line now. The hospital didn't have her weight loss figures as they used different scales so it showed she had gained weight and they wouldn't listen to me when i insisted it wasn't true. I made them redo her height and weight after a weigh in at camhs which showed she was on the 75th percentile. She has 2 days to have a gain. They are very strict her about hospitalising and it is an absolute last resort and that's what reds is saying as well.
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Sotired
Which is such a ridiculous line to take, right?if their kids had cancer they wouldn't argue about hospital-but anorexia which has the highest death rate of any mental health illness is treated like it doesn't deserve hospitalisation.
Last resort my arse-my d had multiple hospitalisation and it saved her life.this is where FBT is used the wrong way in NZ-our people take it as a right to not treat our kids.
I will stick to what I said-hospital is a tool in the toolkit.hospital is not a threat, but often a necessity.dont listen to any fearmongering-and the professionals do that more than they should.
Sotired42
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