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

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Becs Show full post »
tina72
Hi Becs,
so I am relieved that the Irish system does not allow them to refuse the drip totally. That would be really scary...
How is your d? And how are you?
Keep feeding. There is light at the end of the tunnel.
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Becs
Hi Tina - my daughter is eating very well, which is the main thing. She has not made gains yet (on 3,000 calories) so I fear it may take more which she will find very hard. She is very fed up of bed rest, especially with the sun shining outside. She is writing to friends, studying for a couple of exams and doing lots of mindfulness colouring and puzzles so doing her best to keep her mind active. We see or speak to her every day and are bringing her beloved dog in at the weekend. I still feel quite numb after the hospital admission; still haven't cried but I burst into tears yesterday when a cute toddler wanted to pet my dog on our walk :-( I'm going to read in the sun, play music and finally go to the doctor, optician, dentist..... get myself back in order. And work! And of course spending time with my husband and other daughter. Just have such a huge sadness and massive void going from 24/7 care to IP. And starting to get so so angry at the unfairness of it all. All the emotions that were parked whilst I tried to get her to eat. Thanks for asking and checking in xx
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tina72
3000 is on low side, many kids needed more to see constant weight gain. Can they exclude secret purging/exercising?
I know what you mean with that toddler outburst...we live near a playground and I could not see the kids playing there when my d was IP. I just hated them all, all these healthy kids with their happy parents that did not know what is going around 20 m from them...
Try to change that sadness into activity. Distraction helps, not only for the kids...🙂
Keep feeding. There is light at the end of the tunnel.
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scaredmom



This does really resonate with what I felt too. You have put it so eloquently. It is a grieving moment/time right now. Going from taking care of her all the time and then letting it go while she is in hospital can make the feelings very pointed. 
You are so wise to do other things like "normal" things, taking care of appointment for your own health and spending quality time with your family .
The sadness and anger are real. It does get better. She is safe. That is great you are able to bring the dog to the hospital. That would perk anyone up!

 

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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toothfairy
Yes of course! I sent you an email.
Food is the medicine. Recovery is possible.
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Carla
“my my daughter is vegetarian and was well before her Ed onset.  We have refed on a vegetarian diet.  I would have found vegan hard to be honest - we rely on a lot of cheese”

My daughter is a pescatarian and so am I. It’s not a diet but a way of life. I can’t eat meat, it will not get in my plate would make me vomit if forced eat red meat

I look for recordes that have meat alternative, protein powder, cheese, and so on. The dietician knows she doesn’t eat meat and so far have not suggest to do so

As I learned here each case is different like we all are. 

Wishing you and your D all the best and a steady recovery
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Becs
So the dog visit didn't go so well :-( We were able to take D outside but she has to use a wheelchair which she hates more than anything. Then, the dog wouldn't engage with her and just wanted to explore the garden - as dogs do. D just sat in the chair crying. I should have preempted this but will try again this weekend and go to a room at the unit where D can move out of the wheelchair and the dog won't be distracted. Just on the wheelchair thing - she has been fully compliant for 2 weeks with food and has been given 10 mins a day outside, and time in the TV room (otherwise she's on full bed rest) She won't do either of these things as she has to use the wheelchair to get there and no other kids on the unit use one (the other ED patients are further on than her) Would it be a big ask to allow them to let her walk for the 30 seconds it take to get outside or to the TV room? I'm generally very happy with the care she's receiving and don't want to undermine them in any way. I know that bed rest is playing a crucial role in not only preserving calories but in focusing her on how serious this is. But she's very, very low and maybe a small concession wouldn't hurt? Any other experiences along these lines? 
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tina72
Hi Becs,
I think asking is never a fault. If you do it in a way that it is clear that you do not want to undermine them they can explain to you why this is important.
Maybe they want to use that for an incentive to make her do something. Maybe the TV room is not supervised and they cannot exclude that she will move more than needed there.
Sorry that the dog visit did not go well. I think next time will be much better if you can bring him to a closed room with not that much distraction 🙂.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Sorry that the visit didn't go so well. I agree with Jojo, bribing the dog with treats is often a good idea, where ever it is. 

As for trying to get them to change the rules. I know that I found most frustrating the irregular application of rules when my D was inpatient. She was allowed to walk down the hall to meals, and to go out  of the hospital for appointments , but had to go in a wheelchair to the courtyard if accompanied by me, but was allowed to walk out with staff for activities. It made no sense to me. Minimal activity does make sense, but their rules certainly didn't. At the same time, my D would use the wheel chair if it meant getting out of her room. I would tend to not bother asking them to change things. Being consistent really does make sense for all things. 
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.
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scaredmom

Becs wrote:
Just on the wheelchair thing - she has been fully compliant for 2 weeks with food and has been given 10 mins a day outside, and time in the TV room (otherwise she's on full bed rest) She won't do either of these things as she has to use the wheelchair to get there and no other kids on the unit use one (the other ED patients are further on than her) Would it be a big ask to allow them to let her walk for the 30 seconds it take to get outside or to the TV room? I'm generally very happy with the care she's receiving and don't want to undermine them in any way. I know that bed rest is playing a crucial role in not only preserving calories but in focusing her on how serious this is. But she's very, very low and maybe a small concession wouldn't hurt? Any other experiences along these lines? 


Sorry that the dog visit did not go well. 

The wheelchair issue is interesting:
 Do you understand the actual wheelchair rules that are in place? What would be the next step for them to allow some walking? Is she gaining weight so that they can adjust the rules for her walking a bit?
 Having just asked you how to get out of the wheelchair,  I think keeping her on bed rest and using the wheelchair is a good idea right now. The walking will come for sure but not when so ill. I know she won't go outside because of the wheelchair but I wonder if it would be nice to get her outside and also go to the TV room in the wheelchair anyway, just to get a different view etc.. Could you try to  you try to take her to do those things, more for her mood ,if not for anything else. I would try to work within the rules (wheelchair when going around the unit) and try to take her mind off things a bit as well. 

I know it is so different, your journey from ours. I remember, the only way we could take d off the unit when IP, was in the wheelchair. She could walk in the unit only to the bathroom (less than 10 feet away from her room)  or to the main rooms for some group classes or for the "school" on the unit ( 30 or so feet on the same unit) . If I took her off the unit to the gift store or outside we had the wheelchair. They called it a "wheelchair walk" I actually remember that those days were  pretty happy as it was a privilege granted for eating her meals. She could not wait to get off the unit and sometimes we bought nice things at the gift store.  D and I found a deserted hallway and I would run fast with the wheelchair sometimes,  so it was like a ride and it was fun. It breaks up the monotony of the day and I wonder if that may help your d's  mind to  see that there is still a life out there with or without a wheelchair. It is only temporary and necessary at the moment.

This too shall pass. 
Sending my best,



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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