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

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Oxfordad
Hi All,
14yr old daughter discharged herself from IP 3 1/2 weeks ago and has lost almost 3 to 4 kg in that time.We have made a few mistakes and Ed thoughts have been very strong.Have had a 3night stay in hospital this weekend and met with her team yesterday.Daughter now has to fully complete her meal plan or she will be IP again this Thursday (Different unit from her last IP)She has tried so hard today but it seems to much too soon going from eating very little to 3 snacks 3 meals in days .We meet tommorow with the team again with the IP decision made then.We really don't know what to do,Can we turn it around at home with more time ?Are we giving Daughter one more chance or another chance to Ed?I know from reading here it can be done but when do you know what you can and cannot do and admit you need help?

Many thanks .


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scaredmom

Hi Oxfordad, 
I am sorry for the backwards slide. It takes awhile to figure out how to handle ED. Everyone's journey is so different. I agree with the team that she has to complete FULLY the meal plan. There is not much to gain by going too slow, in my opinion. Was she able to eat 3 meals and 3 snacks in the hospital this weekend and if so she can do it at home. 
We needed IP for 3.5 weeks to get started. Some need repeated admissions before the treatments program "sticks" and the child eats to gain.
I see from your original posts she was 9 with the "first bout of ED" and now 14. So I think being as aggressive as you can be, at home and hospital is all you can do at the moment. 
There is no harm in that. 
What exactly are you struggling with? We can help trouble shoot with some ideas that maybe you can use?  I think understanding your situation better, can help us give you more support and advice. As for knowing when you need help, I know I needed a lot of help. Be that professional, the doctor, dietician, therapist for D and therapist for me, both in pt and out pt. 
Sorry how could D discharge herself at 14?Is that the age of consent where you are? 
Do you have a plan for if she does not eat when at home to go back to the hospital and if needed NG tubes? I feel having a plan for every eventuality would be needed so that you can feel more confident too. 

Have you read the books and resources listed on this site? Eva Musby's resources, etc.. and many others? 

Please ask all the questions you have. 
XXX

 

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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Oxfordad
Thank you for your reply Scaredmom,
As she wasn't sectioned and not a risk to herself or others the IP unit couldn't force her to stay.She did comply in hospital with a smaller meal plan but as with being in IP if she doesn't she will have an option of a supplement and then NG tube .When she was 9 it was so much easier to get her to eat but now she just sits there .Even with the prospect of another IP stay she just can't eat.We play card games ,watch movies but get very little.She hasn't been to school since last Easter so friends have all but disappeared.LSUYE is a good idea but what if she has no life outside ED.

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tina72
Did you already try spoon feeding? Can you change one snack or two to a smoothie/milkshake? Sometimes drinking is easier...
Keep feeding. There is light at the end of the tunnel.
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mid73
Is not being admitted a motivator for her? Does removal of phones internet etc get her to eat? My daughter had a stay in an ED unit as we just couldn’t get her to eat enough at home. She was 14 at the time. When she can back home, fear of readmission and removal of all internet access if non compliant with meal plan kept us on track. Sometimes ED just needs to see no matter what resistance it puts up, calories will go in!
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Foodsupport_AUS
Sorry that she has had such a backward slide after she was discharged from inpatient. It sounds like she may well need to be readmitted. You are not being too soft for trying to do this at home but absolutely she needs to complete the meal plan today and every day. When they are too ill sometimes they just can't do it. This was my D there was no consequence, no carrot or stick that could be used to get her to eat, and quite frankly she didn't care if she went back to hospital even if though she hated it. If she can't complete all meals and snacks fully today I would support having her inpatient again. She has gone backwards rapidly and it is important to stand up to her ED to make it clear that there is no alternate but to eat all meals. Giving her brain no other option helps to reduce the debating that it is likely to be going on in her head. 
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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tina72
I do not know if that is an option where you live but KLB is taking her son to hospital to be tube fed if he refuses to eat at home / is not eating enough at home.
Worth a try to ask for that?
Keep feeding. There is light at the end of the tunnel.
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scaredmom

Foodsupport_AUS wrote:
It sounds like she may well need to be readmitted. You are not being too soft for trying to do this at home but absolutely she needs to complete the meal plan today and every day. When they are too ill sometimes they just can't do it.


Wholeheartedly agree with this. She is too ill and someone else Ie the hospital needs to do this for her. 

She needs a higher level of care- IP sounds very reasonable to me. She can't eat and she has to eat/get nutrition and that is more readily done in the hospital. 

I feel you have done your utmost best- I don't think you could have done any better for her, really. She is very ill and needs more intensive treatment.  
Just like any other illness, sometimes you can manage at home and sometimes you can't and nor should you.
All the best,
XXX

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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Oxfordad
Thank you to each one of you for your replies.
Had Camhs meeting this morning regarding IP in which we convinced the team and ourselves that we truly believe we could do this at home.Not been a good day food wise since,how naive and stupid have we been .IP bed tommorow now gone ,Camhs meeting again next Monday and probably a search for a bed will begin again. All we have done to keep her home has meant nothing.
Sorry guys you were all right.
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yellowcaty
Oxfordad

Please don’t beat yourself up about it. I spent lots of time trying to convince myself that my D didn’t need to go to IP even though we were getting nowhere at home. When the decision was finally made we then turned a bed down because we thought it was too far away. She did end up in IP and a better one than we were originally offered. I think it is natural as parents to not want to admit defeat, but I would advise you to take the next bed you are offered. I have learnt over time that whatever we would have done at home it wouldn’t have been enough and my D needed a higher level of care. For some that is just they way it is.
Take care and I hope all goes well until Monday.
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scaredmom
Oxfordad,

"feedback not failure"- is the motto here and it is perfect. There is no right or wrong here. We learn and learn and learn. As yellowcaty says above, don't beat yourself up. No one has a crystal ball and can know what will happen at anytime.  If this was so easy, really all our kids would be cured in a blink of and eye. Please take heart, take a break, get a drink or do an activity you like, to regroup. Please be kind and compassionate to yourself and wife. You are moving forwards as you now know what she needs and how you do that. 

Really, you will get there. Can you let the team know in the next day or two to start looking for bed for her now? Will it speed it up? or do you have to wait until next week to ask? If she does not eat would you take her to the hospital and would that expedite an admission?

XXX
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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Oxfordad
Opened a bottle of red,Forest Gump on the tv and shredding a few tears .Daughter send me a quote last night (She has a wall full of inspirational quotes)'Tommorow the sun will rise and we will start again.'
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scaredmom
🍷cheers!!
XXX
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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scaredmom
You will get there!
XXX
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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yellowcaty
Hi Oxfordad

How are things?
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Oxfordad
Yellowcaty really appreciate your concern.
Daughter seemed  to have a week of last chances which finally ran out today.She has now been sectioned on level 2 and will be transferred to a unit tommorow.It has been a tough decision to agree too,But now it's done feel it is the right one.The unit from what I can find online has a much stricter approach then her last IP (can't believe that was only 5 weeks ago)with a lot less time allowed for visits and phone calls which both us and daughter will  find hard.
Being sectioned on level 2 daughter believes she may be out within weeks so although really upset this morning is now packing her bag.
Not looking forward too tommorow.

Thanks again.
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tina72
Keep us updated how it goes. We all think about you. We are with you in spirit. Sometimes they need a strict start in IP to get on path again.
Keep feeding. There is light at the end of the tunnel.
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Nicstar4
How is today going for you all. Thinking of you, hope that the stay and the difficult way she has to go scares ED into a bit of submission! Let us know. Thinking of you.
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yellowcaty
Making that decision is so tough but hopefully it will be a turning point and she will get the support she needs. Is the unit local to you? The CAMHS unit my daughter was in was very strict, but I think that was a good thing. They had boundaries and consequences when needed. My daughter had to learn some difficult lessons. We also had limited visiting but this was an incentive to get leave. I really hope the next few days go as well as they can. I will be thinking of you.
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Mamaroo
Packing her own bag may be a sign that she is also sick and tired of being ill. I hope all goes well!
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her.
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Ellesmum
I’ll also be thinking of you,  hopefully this will be a turning point for her and a chance for your family to regroup and gather your strength.

keep us updated if you can x
Ellesmum
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Oxfordad
Thank you all for all your kind words.
Got back late last night from the IP unit  which is about 2hrs away.Not sure if because it was late getting there but  the unit felt dark and quite depressing with the staff stress out ,so different from here last IP unit.
Wife very upset leaving her there.
Daughter had not eaten anything since the section meeting Thursday morning saying she had only eaten before to stay out of hospital and now that she had to go back couldn't see the point in trying to eat.Hopefully as you say, after this IP she will be more  motivated to not go back.
Can see her weekends so off to  see her today.

Many thanks again.
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tina72
It does not have to be nice there. In fact (it sounds hard, I know) it is good when it is not too comfortable there. They should aim for going home again and if they want that they have a reason to eat.
What did they do in the unit after she refused to eat? Ensure? Tube?
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
tina72 wrote:
It does not have to be nice there. In fact (it sounds hard, I know) it is good when it is not too comfortable there. They should aim for going home again and if they want that they have a reason to eat.
What did they do in the unit after she refused to eat? Ensure? Tube?


yes, very tough on the family but this is probably right, an incentive to eat. Hope you had a decent sleep last night (as someone who hasn’t had enough for nearly a year I’m a bit obsessed with rest)
Ellesmum
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scaredmom
Oxfordad,
I really hope that they get a lot of weight on her quickly. That will be the way to start getting her brain better. The motivation you are looking for may not come, not yet, but we don’t need them to want to get better for us/the system to make her better. Then time and more food and more time and more food will hopefully do their magic. And along the way as her body and brain heal, you tackle other comorbids. 
I hope you and your wife take some time while she is away to take good care of yourselves. 
Big hug!
XXX
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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