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

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Cat_can
Hi all,

I’m new to the forum and I’m really struggling to feed my D.
She had a diagnosis of AN at the beginning of September. Has had a hospital stay to stabilise physical health. Been home 12 days but she’s restricted her food more and more until she’s had just an apple in the last 24 hours.

I started this thread after seeing one about LSUYE not being appropriate for their child. It’s the same here. I tried being very compassionate as per Eva Musby advice which helped get some food down but she’s still lost a significant amount of weight since discharge.

I’m lost now, I feel desperate. While D was in hospital and eating she appeared to come back. Rosy cheeks, chatting, smiling, being enthusiastic about craft and reading etc. Her obsession with looking at food decreased. I was always wary of her discharge after such a short time and it seems I was right.
We can’t get her weight to stabilise. I have an offer of an IP for her. I think that’s going to be our only option now. 🙁
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ValentinaGermania
Hi,
I would like to have some more informations to help you better:
If she has eaten in hospital and is now not eating at home, what do you think is different now?
Is she drinking? My d refused to drink water in the end and that is a case for ER.
Did you get a meal plan after discharge?

It is quite normal to have problems with transition from hospital to home. What did they say for consequence if she is not eating at home? Can you bring herback if she refuses the meal and have her eat the meal there? What do you do if she refuses to eat?

Sorry that I ask so much but I need to know at what point you are.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Cat_can
mimi321 wrote:
Hi Cat-can, this sounds very difficult and serious. I think if she has only eaten an apple in the last 24 hours she will likely need to return to the hospital. Is it possible (this time or next) for you to use the same approach the nurses used in getting her to eat? It would be nice if they did some kind of transition before you left hospital so they could kind of coach you to get her to eat, or gave you an action plan for this eventuality. Let us know how this works out. xx


I cannot return to the same ward as it wasn’t a specific ED ward. I had spoken to them after discharge when she wouldn’t eat a meal but they just said speak to CAMHS who we’re under for weekly weigh ins. They don’t have specific advice apart from no food for 3 days take to a&e. No liquid for 24 hours take to a&e.
As my D was in a regular children’s ward there was a 48 hour reintegration into home but it didn’t give us the transition time to keep up the momentum to eat. It was really very stressful. She was worried because the hospital had been so regimented then whilst I kept the food routine the same at home it was too quick a discharge process and now she’s failing miserably.
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ValentinaGermania
And camhs is only helping with weighing???
I would call them tomorrow asap. They can send someone to help you. You need a meal plan and help with transition. If they do not have special ED personal ask for another cahms team to be send to.

What are you doing at the moment when she refuses the meal? Did you try to spoon fed her? Some parents had progress with that.
Is she drinking milkshakes or smoothies?

How old is your d?
Keep feeding. There is light at the end of the tunnel.
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Cat_can
tina72 wrote:
Hi,
I would like to have some more informations to help you better:
If she has eaten in hospital and is now not eating at home, what do you think is different now?

There’s no nurses doing the food, it’s me. They had the threat of a tube and ensure, I don’t.


Is she drinking? My d refused to drink water in the end and that is a case for ER

She’s restricting water now. She won’t touch juice or milk anymore. I’ve been told if she doesn’t drink for 24hrs to go to a&e.

.
Did you get a meal plan after discharge?

Just what they used in hospital and it’s what I stick to now but she has refused everything apart from an apple offered since midday yesterday.



It is quite normal to have problems with transition from hospital to home. What did they say for consequence if she is not eating at home? Can you bring herback if she refuses the meal and have her eat the meal there? What do you do if she refuses to eat?

There is no consequence, that’s part of the problem I think. I can’t take her back to the same hospital, only a&e if she refuses food for three days or drink for 24hrs.
If she refuses to eat I sit and compassionately encourage until our allotted time is up. Then we try again at the next meal.
Before the hospital stay I’d sit for hours trying to get her to eat as per the advice I got from forums and things. It always ended up with her being incredibly violent to herself and then me when I had to restrain her to stop her harming herself. Police were called and an ambulance when I thought she’d broken her hand- she refused to go into the car for me to take her to hospital.
She never ate anymore than she had decided was enough, if any, so I can’t use that technique anymore.




Sorry that I ask so much but I need to know at what point you are.
Tina72
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ValentinaGermania
o.k. in that case that she refuses to drink water and has only eaten an apple in the last 24 hours I would take her to A&E NOW.
Do not wait, it will only get worse. ED must learn that not eating has consequences.

I am without words that you are totally left alone with that and without any instructions what to do if she refuses meals.
Please keep us updated what is going on.
Don´t leave the hospital without a plan what you should do at home.

Sorry that you have had such an unprofessional start. I am sure you can do FBT with the right help and a better start.

Tina72
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
And don´t worry about IP: some need that to get started (my hands up). So if you can get a bed in an ED ward (that is important) then think about taking it. They are rare in GB.
Keep feeding. There is light at the end of the tunnel.
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sk8r31
So terribly sorry to hear that it's so difficult at present, and that you have not had good professional support.

Absolutely agree that you should take your d to A & E immediately.  As tina suggests, ringing CAMHS and letting them know that you are in an emergency situation, & need support NOW.

You, and of course your d, deserve better professional care & support.  You are not alone with this struggle, and having a look at the thread 'super resistors' may also be of help.  I know there will be other parents/carers along soon who have been in your shoes, and can offer their wisdom.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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ValentinaGermania
If she refuses to get into the car, get help from another adult family member or friend or call the ambulance.
This disease can get into a very serious state from 0 to 100.
Keep feeding. There is light at the end of the tunnel.
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mid73
Are you being seen by a specialist CAMHS ED team and are you supposed to be doing FBT?
When I was having difficulties with my daughter I oftened phoned our CAMHS therapist for advice during office hours. Out of hours I had to call the police once for violence towards me. I also ended up with her in A and E once for suicidal thoughts. Despite my best efforts I couldn’t get her to eat enough to gain weight. I feel blessed with our CAMHS team that they were very proactive and my D did get a bed in a private specialist ED unit, often units are private but majority of patients, like my D are funded by NHS. Her stay there changed things very much for the better. It didn’t cure her and it’s still a long haul after discharge but she turned a corner there. So the bottom line for me would be if you are offered a specialist bed snap their hands off. Wishing you all the luck. X


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Cat_can
tina72 wrote:
And don´t worry about IP: some need that to get started (my hands up). So if you can get a bed in an ED ward (that is important) then think about taking it. They are rare in GB.


To be honest I think it will help. When she decides no food is going in there is NOTHING I can do about it. No amount of sanctions work, no cajoling works. When she’s in that head space, she doesn’t want to do anything, so will literally go without.

I have been given a plan from the hospital, as such, it’s 3 meals, 3 snacks a day. I took photos of the meal diary they took during her stay so I could see what things they gave her for said meals. I offer those to her at all the times specified.

She’s finally had some more water, enough to get me off her back and she ate a very small amount of dinner.

CAMHS phoned me earlier and said go to gp in morning for health check. So I’ll do that.

I do feel left to tackle this alone.
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Cat_can
mid73 wrote:
Are you being seen by a specialist CAMHS ED team and are you supposed to be doing FBT?
When I was having difficulties with my daughter I oftened phoned our CAMHS therapist for advice during office hours. Out of hours I had to call the police once for violence towards me. I also ended up with her in A and E once for suicidal thoughts. Despite my best efforts I couldn’t get her to eat enough to gain weight. I feel blessed with our CAMHS team that they were very proactive and my D did get a bed in a private specialist ED unit, often units are private but majority of patients, like my D are funded by NHS. Her stay there changed things very much for the better. It didn’t cure her and it’s still a long haul after discharge but she turned a corner there. So the bottom line for me would be if you are offered a specialist bed snap their hands off. Wishing you all the luck. X




Really? I know there’s only 4 beds available on this specialist ward so I am keen on taking up their offer. It’s just not working at home despite my very very best efforts.

We’re under a specialist camhs ed team yes, but I just don’t feel the info and ‘action’ we receive is useful.
I’ve kept asking for a referral to higher tier service as I feel they’d be far more helpful, plus I’d get an hours support during D’s visit too
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Cat_can
tina72 wrote:
If she refuses to get into the car, get help from another adult family member or friend or call the ambulance.
This disease can get into a very serious state from 0 to 100.


Yes I’ve had to call the police and ambulance once before. And I would do it again. My partner went away early this morning for the night for work. Perfect timing for a melt down. Hey ho.
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Cat_can
sk8r31 wrote:
So terribly sorry to hear that it's so difficult at present, and that you have not had good professional support.

Absolutely agree that you should take your d to A & E immediately.  As tina suggests, ringing CAMHS and letting them know that you are in an emergency situation, & need support NOW.

They say to see my gp in the morning. She’s finally had some water and a bit of food.




You, and of course your d, deserve better professional care & support.  You are not alone with this struggle, and having a look at the thread 'super resistors' may also be of help.  I know there will be other parents/carers along soon who have been in your shoes, and can offer their wisdom.

Sending warm support,
sk8r31


Thank you!! That thread is where I started this morning at 3am! It’s great.
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Cat_can
mimi321 wrote:
Hi Cat-can, this sounds very difficult and serious. I think if she has only eaten an apple in the last 24 hours she will likely need to return to the hospital. Is it possible (this time or next) for you to use the same approach the nurses used in getting her to eat? It would be nice if they did some kind of transition before you left hospital so they could kind of coach you to get her to eat, or gave you an action plan for this eventuality. Let us know how this works out. xx


Hi, she ate really well in hospital. Only refused one meal and was threatened with the tube so drank the Ensures in the end. It’s a whole different ball game at home which is infuriating! I don’t get why she eats in hospital but not then at home too.
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Cat_can
mid73 wrote:
Are you being seen by a specialist CAMHS ED team and are you supposed to be doing FBT?
When I was having difficulties with my daughter I oftened phoned our CAMHS therapist for advice during office hours. Out of hours I had to call the police once for violence towards me. I also ended up with her in A and E once for suicidal thoughts. Despite my best efforts I couldn’t get her to eat enough to gain weight. I feel blessed with our CAMHS team that they were very proactive and my D did get a bed in a private specialist ED unit, often units are private but majority of patients, like my D are funded by NHS. Her stay there changed things very much for the better. It didn’t cure her and it’s still a long haul after discharge but she turned a corner there. So the bottom line for me would be if you are offered a specialist bed snap their hands off. Wishing you all the luck. X




Thank you. I’m saying it with trepidation but I think I’ve decided to accept the bed. Heartbreaking have to make these choices.
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sk8r31
This journey IS a heartbreaker...and sometimes a higher level of care is necessary.  You need to change things up, feedback not failure as we say on the forum, and this may be the kickstarter that is needed to help your d move forward.

Sending you warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Cat_can
sk8r31 wrote:
This journey IS a heartbreaker...and sometimes a higher level of care is necessary.  You need to change things up, feedback not failure as we say on the forum, and this may be the kickstarter that is needed to help your d move forward.

Sending you warm support,
sk8r31


Really can’t thank you enough for the compassionate feedback here. I’m still in shock at the rollercoaster this has taken us on. So swift has been her decline that I doubt myself often. It’s reassuring to hear that a higher level of care might be what it takes but also that it’s ok to need it. Thank you
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Enn

Cat_can,
I welcome you here too!
My D needed to be hospitalised and it was a game changer. It helped me to get my game on to feed D. I made the same foods as the hospital and so would say to D, "they gave this to you in hospital and you ate it there, so you will eat it here". I learned to never accept "left overs" and that she had to eat E.V.E.R.Y bite. 
I learned from the nurses how to "tough" against the ED and loving to D.
It gave me a break too, to get prepared at home.
For us hospital was the best place to start our journey. It is not failure as sk8r31 says above, it is just another route to getting effective treatment.

All the best,
XXX

food+more food+time+love +ATDT+ good professional help+no exercise+ state nor just weight+/- the "right" medicine= Healing---> recovery (---> Life without ED)

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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Cat_can
scaredmom wrote:

Cat_can,
I welcome you here too!
My D needed to be hospitalised and it was a game changer. It helped me to get my game on to feed D. I made the same foods as the hospital and so would say to D, "they gave this to you in hospital and you ate it there, so you will eat it here". I learned to never accept "left overs" and that she had to eat E.V.E.R.Y bite. 
I learned from the nurses how to "tough" against the ED and loving to D.
It gave me a break too, to get prepared at home.
For us hospital was the best place to start our journey. It is not failure as sk8r31 says above, it is just another route to getting effective treatment.

All the best,
XXX

food+more food+time+love +ATDT+ good professional help+no exercise+ state nor just weight+/- the "right" medicine= Healing---> recovery (---> Life without ED)



I really think hospitilisation will help D but also help me to get my focus back too. I think I’m shock from all of this so coping is hard. I was petrified when they discharged her from hospital after just 12 days. So was she.
Thank you again for sharing your experience. I can’t tell you how much it helps to keep pushing me on. 😊
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ValentinaGermania
How long will it take to actually get that bed? What did they tell you when you can get her there? She seems to be quite fragile and it should not be too long...
Keep us updated what GP says today.

During her time in IP you can read and learn and get prepared and then you surely will have a better start with FBT at home. I am not sure wether your d is really a super resistor or wether it was caused by cahms leaving you alone with no preparation of what will happen. I think in your shoes everyone would have failed. That was really not a professional start. No reason to doubt yourself or to think you cannot do that in future. In IP you should normally learn how to feed her and what words to use to get her to eat and they will also instruct you what to do when she refuses (give her ensures, bring her back for tube feeding etc.). You will learn how to do that.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Nicstar4
I am so sorry you were discharged without the support. That is awful.
How long until you get the IP bed.
Don’t forget that with nurses, there is not the same connection as with family members, so it is easier for them to listen to people outside family. My d often eats more with others than with me.
I have become more clear about my expectations over time.
It must have been very scary for you when she was not even drinking water.
Thinking of you while you wait for that bed
X
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Foodsupport_AUS
Welcome Cat_can. I see from your profile you are in the UK.Welcome.

Each system has its own pros and cons around the world. So what works for one family and what is available for another can be very varied. 

My D was another one where LSUYE did not work. We are now many years into our journey but early on my D had numerous hospitalisations for the problems you describe. It is important to know that FBT really does have the best evidence base. If you can get re-feeding going at home there are many advantages for your D and for your family. I am not sure if you have read https://smile.amazon.com/When-Your-Teen-Eating-Disorder-ebook/dp/B07B91Q551/ref=smi_www_rco2_go_smi_1405964225?_encoding=UTF8&ie=UTF8&qid=&sr= which has some practical ideas about how to get ahead with re-feeding at home. 

If your D is too ill though then re-feeding getting started in hospital or via inpatient care is the way forward. Unfortunately there is a tendency for very prolonged inpatient stays in the UK, with not a lot of clear benefit resulting. Some parents have had their child inpatient for more than a year.   I am in Australia where there is no option for inpatient stay at all for those under 16. Our system offers medical hospitalisation for instability then always discharges back home. For us the way forward was to insist that no matter what we were going to insist on working towards weight recovery, ideally following the meal plan she had been started on in hospital - no need then for negotiation. Taking her back for reassessment if she was struggling and getting her readmitted if this is what was needed. 

I might add the nurses in hospital did not have a way to get my D to eat either. They just had an ace up their sleeve called a NG tube. D knew that if she couldn't eat in hospital then a tube would happen straight after the first missed meal. They would not/could not offer this as an option when D was home. 

It sounds like you have a good plan of going to GP tomorrow for assessment. Ideally if you in UK make sure you should be familiar with the Junior Marsipan https://www.rcpsych.ac.uk/pdf/CR168summary.pdf  guidelines which should be used to assess stability and need for admission. Quite a few GP's are not familiar, most doctors have little education or experience in ED assessment. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Cat_can
tina72 wrote:
How long will it take to actually get that bed? What did they tell you when you can get her there? She seems to be quite fragile and it should not be too long...
Keep us updated what GP says today.

Well, we’re currently sat in children’s ward. She was admitted last night as BP low. IP bed available on Tuesday. So we’re heading for that after this hospital stay.




During her time in IP you can read and learn and get prepared and then you surely will have a better start with FBT at home. I am not sure wether your d is really a super resistor or wether it was caused by cahms leaving you alone with no preparation of what will happen. I think in your shoes everyone would have failed. That was really not a professional start. No reason to doubt yourself or to think you cannot do that in future. In IP you should normally learn how to feed her and what words to use to get her to eat and they will also instruct you what to do when she refuses (give her ensures, bring her back for tube feeding etc.). You will learn how to do that.

Tina72


You know if I’d had the threat of NG at dr or in hospital if she refused food at home I’m convinced we’d have succeeded but there just was not that level of support. I’ve said time and again at CAMHS that I feel like I’m sinking and no idea what to do. There just was no help and I do feel they failed us.
I’ve asked for the higher tier level of support from an eating disorder service in our area. Camhs are associated with them but I don’t think camhs ed service are equipped enough.

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Cat_can
Nicstar4 wrote:
I am so sorry you were discharged without the support. That is awful.
How long until you get the IP bed.
Don’t forget that with nurses, there is not the same connection as with family members, so it is easier for them to listen to people outside family. My d often eats more with others than with me.
I have become more clear about my expectations over time.
It must have been very scary for you when she was not even drinking water.
Thinking of you while you wait for that bed
X


It really was scary, just little sips and she was going a yellow colour. Horrible. We’re in hospital now for stabilising.
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