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

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casc
I'm new to the forum but posted a few days back with our journey so far. We are 5 months into FBT and my D has been declining over past month. I've tried everything I can and I continue to loss. This morning I lost it dragged her to the table, this was a really bad move and didn't help at all and has upset us all. She has now gone to my in laws for a bit. I have rung CAMHS and asked them to help and hospitalise her at least to stabilise her eating again and give me a little break they won't unless she becomes medically unstable. I'm feeling really lost and have no idea what to do.
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K63
Hi casc, don't be hard on yourself this refeeding is the most difficult job you will ever do we all know we need to stay calm and supportative but we are human , we have all lost it at times . When I lost it with my d I went back later when I was calm and said I was sorry and as time went on I learnt to take more time out and let my husband do some of it . My d always wanted me there but I knew I needed space away sometimes so try to get time away even for a walk a coffee something you like doing. I watched Eva Musby s video trying to help your child to eat . I still have to talk to myself at time and remember that she is suffering also and doesn't want to be like this. I also learnt that if I felt I was going to get upset or cross or cry I used to say I needed to walk away for a few minutes and would be back I would walk outside and calm myself.
If you are worried about your d and she isn't eating or drinking and CAMHS aren't acting quickly enough take her to A& E. Sending you warm wishes to you.
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. 
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casc
She has been to CAMHS for a check and has lost 400gms since Tuesday last week. All her obs are stable so they will not admit her neither will the hospital. I'll watch the videos. I feel terrible and think I've lost her trust. She is staying with my mother and father in law for a bit now
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EDAction
casc, 

I feel terrible and think I've lost her trust.

My heart breaks for you.  But no one loves her like you.  Others love her dearly too, but no one loves her like her mother.  Take the long view.  This WILL get better.  Your relationship with D WILL improve.  But you know your job right now and you are doing it.  Mistakes will be made.  We parents are human.  As I told my D the other day, sometimes I haven't handled things in the best way and sometimes I made mistakes, but all I can do is keep going and try to do better.  And I WILL keep going.  I WILL NOT stop.

Sending a cyber hug -
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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Sotired
I'm sorry hon, I've been there and like you we sent d to in laws for a couple of days.it did help cool things down a bit, but while she was away I took stock of my own resources too.your team can definitely recommend a stay in child and family unit.she DOES NOT have to be medically unstable to be there, most of the children there are not.
It does mean however that her obs will be taken and any meds she is on will be given.it means that you can have a break where the burden has become too much.you can tell your team that if they can't help you, can they please refer you to someone who s prepared to read admission guidelines to starship-one of which CLEARLY STATES parents exhaustion as criteria for admission.added to that she has started going backwards.
Another question.how do they know she is stable?they aren't doing any obs, no blood tests-nothing.are they just taking her word for it that everything is fine?they have to take obs to make these kind of pronouncements.they haven't been.the other thing is that obs change sometimes at nght.so they can look ok during the day, but be dangerous at night.
I'm upset for you.it just convinces me that they are trying to age her out-don't let them get away with this.while your d is away, ring the team and insist on action.if they are going to make grand pronouncements, then they have to back them up with actual help for you and also some facts.currently they have nothing.if they haven't done obs for months they haven't even got a baseline of normal anymore for your d.
A word of warning about her staying at inlaws-the next time things blew up in our house, my d threatened she would go and live there instead.so just make sure that that's not on offer from inlaws.we sent d to residential rather than that.
Don't worry about anything else-just keep working on getting effective treatment.she will forgive in the end.
Sotired42
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casc
Thanks. They did a set of obs today my FIL took her in when I rang them broken down saying I need help. I asked if they could find somewhere for her to go they said there was no respite care here. I asked them what happened when the sole feeder breaks down and can no longer do it. I told them my house was a mess, my children were a mess and my family is falling to pieces and asked what community help was there for me. I said I needed d to go away and get her eating stabilised and give me a chance to try catch up with weeks of housework and quality time my 3 younger children need. I said it had gotten to much and that things had been declining for the past month and I've been asking for help and that they haven't given me any. They ended up saying they could sometimes get respite type care for exhausted families but It needed to be arranged through the psychologists I said great organise it. Unfortunately the 2 psychologists we deal with are away training until Wednesday. I have a gp apt tomorrow with my gp who is very resourceful or will find out anything that will be available for me he's an ex ED Dr so very very good. So yes while she's away I'm desperately trying to find some home help and come up with a better support network so I'll be ready for round 2. I'm not sure she will even want to come home at this stage, she usually has anxiety when away from me and hasn't been eating for anyone if I've popped out or something, but no complaints yet and no asking to come home.
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casc
She has only just turned 17 last week and I've heard that they don't ditch them when they turn 18 if they are under treatment with them still had a friend similar and they never ditched them. My daughter was so smug after I lost my cool this morning she was happy as as she ended up missing breakfast. I was a bawling mess and she was happy. So awful as its not like her.
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Sotired
Ask your GP to do referral to CFU if there is no mental health unit in Tauranga.(I'm not sure there is for adolescents as we have met four families in the CFU from Tauranga).ignore her triumph at the moment-anorexia feeds on pain-hers and yours,so the less you show to her the better.however, don't be even remotely stoic with your GP or the team.let it all hang out, hide nothing.its the only way we got any help.
Your GP can possibly also, if he is a former ed doctor refer to starship-ask your doc to go through the criteria with you.
Our GP organised many of our starship admissions using the criteria and taking proper obs(I'm willing to bet they didn't do orthostatic heart rate at today's checkup).i can promise you that there are ways to get thus done, but I'm not going to lie, it takes a supportive GP and an ability to use the criteria for admission.this is accessible on your computer.i think there are at least 10 criteria and I know my d usually met at least five.
Use what you have-a good GP is often your best ally.
Good luck,

Sotired42
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casc
Thanks. They will have done bp and hr when both standing and sitting they always have when they've done them. They must stop doing them when they get to a certain weight percentage or maybe if she is gaining weight? My GP is brilliant and I am 100% confident he will find something out or get some referral for her. She is doing well at the inlaws they're not great with calories as they don't really understand the volume of food she needs to consume but at least she is eating it and eating it all.
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Sotired
Orthostatic is from lying to standing-not sitting to standing.from sitting to standing the difference would be negligible as the body isn't going from prone to upright.thats shocking that your team aren't doing even that right.it does make a difference.
Yeah, my d did great at in laws too-her anorexia got away with everything [frown]still, it was a few days and it gave me time to research options.you could ask your GP to search residential treatment if you think that would help.there is one public place, used to be called thrive, has a longer Maori name now that I can't remember sorry.
I hope that you can sit down with your wee ones and read a book or play a game while oldest d is gone.my ne is the oldest of three too so I know that it's very tricky fitting the others in.
Sotired42
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casc
Oh. She's never had a bp like that done not even in ED Hmmm. My inlaws are good just gotta teach them a bit more about calories and then they'll be great. She gets away with nothing there. Both will sit at the table all day whilst she completes meals they don't have anything else to do. My sister inlaw came up with an idea that d goes to her house one night each week her dad's 1 night (she already does that) and where she is now another night. If I made sure food was 100% right would it have a negative impact on her refeeding?
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Torie
casc wrote:
My inlaws are good just gotta teach them a bit more about calories and then they'll be great.


I wonder if you could come up with something really simple for the moment, like your d needs the same serving as your father in law, plus she needs a nice glass of milk with each meal, and dessert two times a day. I know that isn't the right recipe ... just trying to give the idea of a simple direction.  I have used this with good effect - she needs as much as you, plus x, y, z.  Not perfect but a start.

So sorry for all the difficulty, but so so glad you're getting some help and respite.  

Heartbreaking, but keep the faith. You will get your d back. xx

-Torie P.S. Sotired is right that they are supposed to take bp lying down and then standing. You can find the simple instructions (with timing) with a google search or let me know and I'll look for it.

Hang in there. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
If they know every trick to look out for, why not?they need to watch her 24/7 so she can't throw food away or exercise it off but if they are ok with that, then give it a go.send menus to them via email so your d can't change them.
Thanks Torie, i learned about orthostatic heart rate from reds but if you have a link and have the time to post it then at least casc can take it in so they do it right.sigh.it shouldn't have to be this hard.
My proviso is that if the weight continues to drop then change the plan.
Cheers, Sotired
Sotired42
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Torie
Here are the CDC's instructions for taking orthostatic pulse and blood pressure (the CDC is the Centers for Disease Control, run by the U.S. federal government):

https://www.cdc.gov/steadi/pdf/measuring_orthostatic_blood_pressure-a.pdf

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
We've all lost our cool (even with non ED kids) so don't worry so much about that.  The important part is that it sounds like you are getting the support and help that you so desperately need.  SoTired is the queen of navigating the systems in NZ so keep at it and keep insisting if inpatient or respite care is what you need.  As hard as losing your cool was, it sounds like it helped!!
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BattyMatty_UK
We've all been there... lost our cool... Here's a link to Eva Musby's video which you might find helpful - she describes ways to get your child to eat while staying calm (easier said than done, I know!). Eva's videos are well worth checking out and you can find them on YouTube
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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