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nafe

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My D is now 18 months since diagnosed with AN. She spent a year in and out of hospital. She has manage to start eating again (vegan) but do not drink water. She manage to stay out of hospital and now she is fully restricting.
How I can help her to at least drink water.
coffeeandcake

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Reply with quote  #2 
Hi, and welcome- this is a safe place to come and you are amongst friends here who understand what you are going through.

I have not personally had my daughter refuse to drink, but from reading other peoples posts, if she has not drunk anything for 24 hours then you should take her to the hospital immediately.
With regards to eating, I am not sure how long without food before the hospital is needed, but I don't think it is very long...a couple of days maybe?  

I am sorry I can't be of more help with this very tough situation.

Which country are you in?  I'm in New Zealand, and I know anyone in Europe is probably asleep by now, but its late afternoon in the US so I am sure you'll hear from someone else soon. 


XXOO

sk8r31

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Reply with quote  #3 
Hello & welcome; sorry you have a need to be here, but hope that you can find support as well as good evidence-based treatment information.

As coffeeandcake suggests, 24 hours without drinking should send you to the ER or A & E with your d.  Two days without food is the same.

It is a very serious situation with such severe restriction and needs to be assessed medically.

If you provide a few more details on your situation and where you are located, that can help forum members to provide more specific suggestions.

Sending warm support,
sk8r31

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

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Reply with quote  #4 

hi nafe, 
Welcome, as the others have suggested, if she has not had any fluids for 24 hours, she may be quite dehydrated and require an IV drip. 

I would agree with sk8r31 that it sounds quite serious with severe restricting ie fluids. I would wonder if she needs medical attention sooner than later. 
Would you be able to take her to hospital for urgent assessment today?
I am in Canada. 
We are here to help. 
Take care.

nafe

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Reply with quote  #5 
Due she does not want to enter emergency care coordinator asked me to take her home and bring her for a medical tomorrow. Obviously they don’t see a problem until tomorrow if she doesn’t drink or eat.
nafe

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Reply with quote  #6 
We are in Australia
deenl

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Reply with quote  #7 
Hi nafe,

So sorry you are having such a tough time. What age is your daughter? 

In your shoes, I would contact her old treatment team and tell them what the situation is. They may be able to help.

I am sure that some of our Australian members will post soon with more specific advice on navigating the Australian system. 

Hang in there,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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] )
  • We cannot control the wind but we can direct the sail.
nafe

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Reply with quote  #8 
My dear daughter is turning 16 next month. She was diagnosed when she was 14 and half. Since then she does not drink water. She was in and out of hospital for a year. A very strong ED is what I get told all the time. I want to keep hope.
Foodsupport_AUS

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Reply with quote  #9 
Nafe welcome to the forum. I can see you have been battling on your own for a while but this is your first time posting. 

Are you able to let us know what state you are in? Then hopefully we can point you in the direction of more resources. 

Unfortunately it is common and not rare for staff in hospitals who are not ED trained, and sometimes even those that are ED trained to ignore the risk of marked restriction. If she has not drunk at all and is severely restricting insisting on going to A&E is the best step forward.

It sounds as though your D has been struggling for some time. Although most public services in Australia offer FBT it does not sound as though this is how your D is being treated.

When you say your D does not drink water, does this mean she has no fluids at all normally over the last 18 months? This is definitely of concern and needs to be addressed my like the restrictive eating and veganism needs to be addressed. 

Your D always has hope of recovery, and at this stage it is early on. What is most urgent is getting that nutrition starting again as soon as possible, and getting her weight back to where she needs to go. 

__________________
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.
tina72

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Reply with quote  #10 
Hi nafe,
welcome here and great that you found us.

Can you give us some more information?
Is she drinking no fluids or only no water? For how long?
What do you mean with "she is fully restricting"?
What is her weight state?
Do you serve her food or does she do it on her own? Are you vegan, too, or is it an ED-habit?
What was her therapy in hospital / outside up to now? Did you do FBT?

Tina72
nafe

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Reply with quote  #11 
We are in WA your questions and thank all of you for being here.

She does not drink water, she only drink a coffe with
milk (fat free osoy milk) in the morning with her breakfast. I don’t drink coffee my hubby does and support her as herdoctor too as she can’t drink water.
I want to know how I can help her to drink water. She has not drink water since diagnosed in Sep.2016.she restricted food for a whole year, treatment was NGT get her back to MSW and discharged home, I sat with her with food for the 30 min. 5 times a day and
she will not eat
I decided that for me her weight is just a number and I am not interested for me is important her health. She is very fix in her weight. FOr her weight is all about.
In Sept. 2017 she finally came to term to eat she started having just weetbix for 3 main meals, progressively she went to vegetarian and then vegan. Only food she feel safe (beans, peas, sweet potatoe, potatoes, rice, avocado, bananas, nuts butter and sometime bread) we are not vegan neither vegetarian,
Medical team will no push her to individual therapy we had done few FT and she did not want more and was suspended.
I asked about FBT and they don’t think it will work for her. The more we ask her to do something the more she put breaks.
I want to keep having hope.
As I write I manage to get her to sleep with me in order to know she is breathing. Hopefully tomorrow I will take her back to hospital due restriction since the weekend.




Foodsupport_AUS

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Reply with quote  #12 
It seems like the system is letting you down, leaving you without enough support. If she is unable to eat or drink at home then she needs to be hospitalised. There is plenty of water in coffee though of course ideally she should be drinking something else. The last thing someone with a serious eating disorder needs is large amounts of caffeine. 

Have you read all of the documents on the learning center particularly in the essential reading tab. I would also suggest if you are interested in FBT or similar to look at these  and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf documents from Victoria which look at family led refeeding. 

You and your husband ideally should be on the same page. Agree on a strategy and work to beat her eating disorder as a team. Her condition is very treatable. Many of us have had children with very severe eating disorders requiring multiple hospitalisations, there is definitely hope but there is also a lot of work to be done by you and your husband. 

__________________
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.
nafe

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Reply with quote  #13 
The system is just keeping her alive, not sure is treating the ED. I know is an improvement from last year, she at least has started to eat. SHE just drink one cup is coffee a day (morning).
How I can help her to seek individual tersphy.
I have read many books and for nebis fusttsting how sound the child comply to eat, I try and try and try asking to eat drink, put the food in front the glass of water and it is a battle ,
Thanks for your reply and links.
tina72

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Reply with quote  #14 
Quote:
Originally Posted by nafe
She does not drink water, she only drink a coffe with milk (fat free osoy milk) in the morning with her breakfast. I don’t drink coffee my hubby does and support her as herdoctor too as she can’t drink water. I want to know how I can help her to drink water.


One coffee in the morning is not enough fluid for a whole day. What about juice? Smoothies?
You only can help her to drink water and eat fear food when you require her to drink/eat that. With love and compassion. Try it with a small amount, maybe a shot glas with water.

Quote:
Originally Posted by nafe
She restricted food for a whole year, treatment was NGT get her back to MSW and discharged home, I sat with her with food for the 30 min. She is very fix in her weight. FOr her weight is all about.


If she is still restricting and fixed on weight I think she is not fully WR. She will need to gain more weight to start brain recovery.

Quote:
Originally Posted by nafe
In Sept. 2017 she finally came to term to eat she started having just weetbix for 3 main meals, progressively she went to vegetarian and then vegan. Only food she feel safe (beans, peas, sweet potatoe, potatoes, rice, avocado, bananas, nuts butter and sometime bread) we are not vegan neither vegetarian.


Being vegetarian/vegan is often an ED behaviour to have a cause to restrict food. If she was not vegetarian before ED (and I think she was not when you are not vegetarian) she should be able to eat normal food again. Vegan is something which is not possible for ED patients. You get not enough fat and calcium and B-vitamins with that. You need to stop that. How do you tackle fear food at the moment?

Quote:
Originally Posted by nafe
Medical team will no push her to individual therapy we had done few FT and she did not want more and was suspended. I asked about FBT and they don’t think it will work for her. The more we ask her to do something the more she put breaks.


Individual therapy does not help in most cases because her problem is her malnurished brain and she will not see that and work on that until it is in a healthy state and then she hopefully does not need any other therapy any more because most problems you have at the moment are caused by ED and brain malnurishment.
Why do they think FBT will not work? Did anyone ever try it? Or is the team not used to FBT and does not support you because of that?

As long as we asked our d "please, can you eat that xy" she did not do that. But when we first put a plate with food in front of her and insist that she eats that now, she did it. She does not need to like it. She does not even need to be compliant. She just need to eat it. Try to be strict. Read Eva Musbys book. Do not ask her. Require eating. If she does not eat, all other life stops. She need to re-learn that eating is important and that she can eat a great variety of food. I know that is easier said than done but it is possible. My d is 18 and I still serve magic plate for lunch and she eats with appetite all that is served.

Hang in there. Don´t lose hope. But if you want to help her, I think you need to change something. She can not be serving herself as long as she is restricting. She cannot make healthy decisions about food, so you need to do that for her until her brain is better.

" I try and try and try asking to eat drink, put the food in front the glass of water and it is a battle."
Yes, that is a battle. But if you do not win these little battles you cannot win the war. If you win one battle, ED gets weaker. Do not ask her "do you want something to drink", put it in front of her and say "you need to drink that now". Try it with a small glas first and then increase portions. It works. Fight that battles.

Tina72
nafe

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Reply with quote  #15 
D is hospitalised, developed refeeding syndrome. She is off continues feed now and not eating her meals.
I need help about drinking water, at the hospital they don't care if she drinks or not and she use that as excuse when I bring the glass of water. How I can do?

tina72

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Reply with quote  #16 
Hi nafe,
I cannot believe that they don´t care if she is drinking or not. What do they do against her being dryed out?
Did you see a doctor and explained that she is not drinking any more for such a long time? Can you ask the doctor to just tell her she needs to drink what you serve her?
My d refused to drink in the last days before IP and she was on a drip 5 minutes after we got there.
What do they do against refeeding syndrom? Is she on tube now?
Tina72
Foodsupport_AUS

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Reply with quote  #17 
Nafe I assume they are concentrating on getting nutrition into her now if she is not eating her meals. Does she have a NG tube? If so then that has her water requirements in it too. Water is an essential part of life, and if your D has managed for 18 months without water then she must be getting it from somewhere, her vegetables, other drinks including her coffee.  Inadequate fluids do put a strain on the kidneys but we can get by with only very small amounts per day - during WW2 the water ration in the desert for soldiers was 600ml per day. 



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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.
scaredmom

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Reply with quote  #18 

What an interesting fact- " during WW2 the water ration in the desert for soldiers was 600ml per day." 

good to know 
thanks
 

clem

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Reply with quote  #19 
Dear nafe,

My d also refused water and hardly drank for a while, it's what made her end up in the hospital, severe hydration and of course starvation. It took a while to get her to drink, she now does freely, which is one battle that AN has lost, she of course is on a hugely restrictive diet and is also a vegan and that is the current battle.

This is how I got d (14 nearly 15) to drink again and at home.

I hid the water!
I made ice lollies with slightly diluted squash/cordial, the idea was to re-introduce fluid (albeit in a really weird way). It work, very slowly but surely. She was afraid that all fluid would make her gain weight, so I just froze it and 're-packaged it'. When she accepted this and that it made her feel better (hydrated) we moved onto small glasses of cordial/squash. I also got her into herbal teas, which are great (mostly water), as well as very mild decaf coffee. I gave tiny mugs at the start and causally increased the mug size.

I am trying to get my d vegetarian, it's v hard though, as I am also battling just to get her eating enough calories in a day. She does have to take daily supplements of multi vitamins, Vitamin B complex and Thiamine (all prescribed by hospital).

Things I am making at the moment and that hit some daily vital nutritional needs are green pesto (homemade with basil, chickpeas, garlic and pine nuts) with wholegrain pasta, chilli bean soup with beans and pulses, soya based yogurts, mixed vegetables inc pulses and beans with pasta/rice, Tofu (I tend to marinate it in either sweet chiili sauce or make an Indian tandoori marinade), jelly desserts, soya based chocolate or caramel desserts (high cal) etc.... if you need any recipes, let me know...

vegan is not ideal, I know this, I just figure whilst I am newly adopting the 'magic plate' method, I am doing one thing at a time (increase the calories everyday, so how this works, then gradually (when d is in a slightly better mood, cos she is feeling better) move to a vegetarian diet, in the meantime there are high calorie and nutritional vegan options whilst you think of getting your d like I am trying to get my d onto a vegetarian diet (one that will include fish) and then onto a more balanced 'normal' diet (my d has never been a big meat eater).

Hope this helps a bit! xxxx


__________________
D15, Restrictive AN. 5' 8" and 48 - 50kg. Don't know, threw out the scales! Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. In the trenches and tackling FBT.
tina72

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Reply with quote  #20 
Hi clem,
you seem to be a "professional" refeeder up to now! Ice lollies - what a great idea!!!
I hope you get the change to vegetarian (and then hopefully to meat) soon!
Tina72
clem

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Reply with quote  #21 
Thanks Tina72, it's amazing how crafty we parents can become in the face of ED!

Loooooong road ahead, but we have started, off to buy plastic crockery later, a few plates etc... got smashed up over the last couple days. It's a nightmare, but at least d is eating something and I now have a small bucket full of porcelain for mosaics!

All of the research, reading and you guys are really helping to educate me, as well as arm me 'to the teeth' x

TODAY IS A GOOD DAY!

__________________
D15, Restrictive AN. 5' 8" and 48 - 50kg. Don't know, threw out the scales! Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. In the trenches and tackling FBT.
tina72

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Reply with quote  #22 
"TODAY IS A GOOD DAY!"
[thumb]

I hope a lot of good days will follow!
Think about doing a mosaic work with the broken china to smash at her wedding shower in future!
Buy big plates, the portions look smaller on big plates and she can eat it easier.

Send you a big hug! [wave]
Tina72
martican

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Reply with quote  #23 
When my D was strict vegetarian (and this could also work for vegans), I was making veggie soups based on chicken or beef broth, and told her it was veggie broth. Many vegetables (broccoli, cauliflower) mask the taste of the broth especially after blended and added cream/or coconut cream. Also, lentils and beans hide the flavor. I  keep the fat from the broth (I make it homemade), and add it to the soup, too. Also, I cook rice in it - and if you turn it in stir fry, add soy sauce or other sauces - she will have no idea that the rice was cooked in fatty chicken/beef broth. That way your D can get some much needed animal protein and fat. 

Clem - I love your perspective and idea about the mosaic - it will be a reminder of the hard work you put in that mosaic in order to make some beautiful shape [wink] Pun intended! 
clem

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Reply with quote  #24 
Thanks Tina72 and martican!

Sending positive thoughts to you nafe! x

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D15, Restrictive AN. 5' 8" and 48 - 50kg. Don't know, threw out the scales! Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. In the trenches and tackling FBT.
nafe

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Reply with quote  #25 
Thanks to all for your replies and comments.
Yes at the moment they are getting nutrients (NGT) she is in a meal plan and refusing water, also vitamins.
This time when she leave hospital I want to incentive the intake of fluids and also t take her vitamins (specially B complex) at home. Usually the hospital don’t make her have them.
I can not hide food due she is in charge completely of her meal plan, she does not want me to prepare anything. She does all by herself when she is at home. She usually is good and suddenly something happen which she just restrict and can’t eat. When I talk to her about drinking water and having vitamins she answer is not my business and it is her body.
I eat with her all her meals except when in school or if I am busy with the other children during the weekends. When I let her be vegan I thought I am feeding the ED, but after a year of just NGT for me it was hope of seeing her eating by her mouth again.
Thanks for being around.
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