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

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Adlih64
We had second CAMHS appointment of this week today.  As suspected she wouldn’t engage and her weight is still unknown so no official diagnosis as yet.  Things had deteriorated again over the weekend with full refusal of any food since Friday evening until Sunday evening - due to having some crisps at a movie night on Friday. As a result she has been detained under the MHA and will be going into hospital tomorrow.  Although told this was likely on Monday don’t think she believed it would happen.  She also didn’t believe discussions of health risks.  Likewise was also a wake up call to my husband who hadn’t understood seriousness of situation - he works away a lot and also was a lot of denial.  He was totally against the admission but whilst I am heart broken have some sense of relief in that she will now get some help.  I really wish I could’ve helped her at home but couldn’t get more than one meal in.  I was praying she would accept weighing and meal plan but wouldn’t until after detention was in place.  I am in awe of you who have managed to do so and feel so guilty that she is being sent away before we could try.  This has all escalated so quickly for us and I can’t believe we’re at this point.  My poor girl is terrified but more worried about how she has upset the rest of the family.  
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Foodsupport_AUS
I am sorry to hear that it came to this, but also pleased to hear that they have truly been listening to you and have taken action. I hope this is the start of her recovery. It is really common for them to not  to understand how truly ill they are, and being required to have treatment can start the path to recovery. 

For you I hope you can rest easy at least over the next few days while they work at starting her eating again. I am sure your D is frightened, and concerned. As for the family upset, really that is best not discussed - it would have been much easier if she had eaten, but in all honesty she just couldn't. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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sandie
Hi Adlih, it must be a huge relief that she will now get the help she needs to start recovery. You have worked so hard to get this help for her, and managed to work through a system which put up barriers. I think you have been amazingly strong and determined. Sending you a huge hug. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Torie
I am so pleased that they are going to help your precious d.  What a relief!

It made me sad to read this: "I really wish I could’ve helped her at home....  I am in awe of you who have managed to do so and feel so guilty that she is being sent away before we could try."  

Please try not to feel guilty.  For one thing, there is nothing to feel guilty about; it is not your fault.  Speaking as one person who was lucky enough to be able to treat at home, I want to stress the word "luck."  It is a long story, but please try to trust me on that.  

For another thing, feeling guilty does not help your d; it drags you down, and that helps ED.  You did the best you could.  That is all anyone can ask, and all any of us can do.  Please be kind to yourself. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Adlih64
Thank you all x
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ValentinaGermania
Please know that many of us needed IP to get started (my hands up to) and that this is not your fault.
Monday is a long distance for ED, so if she again does not eat and/or drink for more than 24 hours in between please take her to the hospital asap. This can get really dangerous in a short time.
Keep feeding. There is light at the end of the tunnel.
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Enn
I know it is hard to think of her in IP. For us it was the best thing. She was taken care of 24/7. She got her nutrition...all of it. I had some respite. I learned from the nurses how to ensure she ate everything. 

I know for some Ip was not a good thing. I am of the mind that if they need higher levels of care then it is a statement as to the severity of the illness not at all because you could not do it. 
Hospitals are not bad. Your team recognizes that she is very very ill. It is not just a ‘cold’ it is a rip roaring pneumonia. I hope that makes sense. I am sure they will take great care of her. 
Hugs!
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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Kali

Dear Adlih64,

I'm glad your daughter is safe and that she is getting the help that she needs.

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I really wish I could’ve helped her at home but couldn’t get more than one meal in.... I am in awe of you who have managed to do so and feel so guilty that she is being sent away before we could try.

Please do not feel guilty. This is about the illness not about anything which happened or didn't happen at home. And you got her help when the illness was too strong for her to be able to eat at home. You are doing everything you can to help your daughter.

For the immediate future here are some of the things which have happened to families or that they can do to support their child when their child goes into the hospital/residential:

She may be angry and take it out on you. She is really just frightened and it helps to remember that and not engage if she is lashing out. It is ok to take a step back if this happens.

Hopefully the unit will be able to help her gain weight at a rate of about at least a kilo a week.

Visit as often as you like and bring her anything which she is allowed to have and which might make her more comfortable. Some ideas: her favorite stuffed animal, playlists of her favorite music on a device, photos of friends and family to have in her room, and coloring books. She may not feel well enough to read now but later on may appreciate having some books or even audio books if she likes those. Play games together when you visit if she likes games.

She may beg you to take her home. This may be the eating disorder wishing it could get out of eating...it happens to nearly everyone when their child realizes that they are being made to gain weight in treatment. We didn't let our daughter leave residential treatment until she had completed the full program even though she begged us to take her home. She was able to leave after she was weight restored and had completed a  maintenance period for 6 weeks after that while she was given a little more freedom. (leaving the unit with others, coming home for a weekend, etc) 

You will have plenty of time to support her and help her eat when she comes home. This broke my heart when I was first told it by the social worker, but she will not come home cured. But hopefully your daughter will come home eating and at a better weight and this is key. I used the time she was away to help myself recover from the stress and at the same time get ready for what would happen when she came home. I read a lot about meal support and nutrition. When she came home her weight took some dips and it was not a straight line so I had plenty of opportunity to learn first hand about how to accomplish weight restoration at home and to be successful doing so.

Your daughter may not understand that she is ill. This is called anosognosia and can be a symptom of the illness. Here is link to a blog post which explains it pretty well. 

https://tabithafarrar.com/2016/12/anosognosia-eating-disorders-dont-know-sick/

Try to make sure your daughter has a good outpatient team when she leaves inpatient so that there is support afterwards in case things become difficult again.

Sending you hugs and strength to get through this time,

Kali

 

 

Food=Love
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Jeanette

Hi, 
So sorry your d is having to go into IP.  It is heartbreaking but she will get the help she needs and deserves.  

You have nothing to feel guilty about, I have seen how hard my d fought to keep gd from going into hospital but ED was just too strong.  Will be thinking of you and all the family. X 

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Adlih64
Thank you everyone for your kind words of support. As difficult as it was yesterday, I know she is where she needs to be.  We did have another 48 hour starvation period prior to admission and feel this was going to continue to deteriorate. I have spoken with her this morning and she seems reasonably settled although still a bit shell shocked.  She has eaten breakfast - first time in months but she’s terrified and just now saying she’ll do what she has to to get out.  
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Adlih64
Hi
Feeling a bit confused and looking for some thoughts.  Daughter was admitted on Thursday, weight was unknown at time of admission.  After weighing in hospital weight is at 81%, bmi 15.  Following day CAMHS psychiatrist called my husband and said weight not as low as he was expecting and felt that we could potentially treat at home.  My biggest fear is that she has been so resistant to any intervention to date including weighing.  There was two 48 hour periods with no food within one week before admission so condition was continuing to deteriorate and I feel we have had a chance to catch it just in time before it became critical.  A meeting is arranged for Thursday in ward with D present.  My husband has arranged prior meeting with CAMHS on Tuesday to discuss concerns and what treatment would look like.  Areas of concern is that before she was admitted he spoke about home treatment and said she could continue going to school, when I expressed that I was certain she wouldnt eat, he said the scales at weigh in would then show that? Also alluded to her that lower end of healthy weight range would be okay (was maybe trying to encourage to begin here).  She also deeply dislikes him - to be expected as he done the detention.  She has opened up to a specialist doctor in IP whom she likes.  Charge nurse in unit called me same day talking about fbt and I have asked to meet with unit consultant before Thursday meeting.  She has now started a diet plan, they were insistent that they couldn’t support a vegan diet which I was pleased about as it is part of ED.  Dietician expresses that her view is that thoughts are deeply entrenched and she will be feeding this back to consultant.  She has been eating the food although hating the dairy and is promising the world if she can do it at home.  I know she is trying to eat her way out just now and says she will do what it takes.  She has had bread, fruit juice, milk and cheese which were impossible at home.  she called me last night deeply distressed - each meal throughout the day had dairy products and said that a nurse told her she can make her own choices at home.  I have told her dairy is non negotiable forever now and she says she will comply if she can just comeback home.  I obviously want her home but not before she is ready and established on an eating plan.  She is also talking about advocacy worker on Monday and wanting to appeal to tribunal.  I think we have managed to dissuade her. It would only cause her more stress but I am scared of the message she would be sent if she actually had it overturned especially if consultant now of this opinion.  It may be best if she thinks that she can only come home with strict conditions with the fear of hospital still hanging over her?  Don’t know what to do for the best and worried we will be back to square one. 
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ValentinaGermania
I totally understand what you are concerned. There are a lot of alarm bells ringing here for me about what there has been said.
Try to insist on no discharge until she is stable, gaining weight steadily and you have tried to eat at home on home leave.

" It may be best if she thinks that she can only come home with strict conditions with the fear of hospital still hanging over her? "
This is what worked here. Same strict conditions as in IP.
Many patients try to eat themselves out to be able to continue restricting at home. It must be clear that this is not gonna happen.

I personally think that doing FBT at home is the best option on long term but it needs to work. Perfect plan would be now to try to take her home for one meal and see if she eats there. Then half days, then a total day, then a weekend. If that all works and she eats at home with these strict rules it is maybe worth a try.

"said that a nurse told her she can make her own choices at home"
Please talk to that nurse and ask her to tell your d that she needs to eat what you serve at home. It is not true and totally unrealistic that she will be able to make her own choices at home. The nurses should not tell patients that.
Keep feeding. There is light at the end of the tunnel.
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Kookaburra
Hi Adlih, sending you strength & good luck. I won’t be able to give you much advice but we are also struggling with a lot of resistance, and also struggling with whether IP or home is the better choice. My D had just over a month in hospital, and we took her out early, confident we could refeed her the last 2kgs. Unfortunately it’s now 4 kgs...   I now wish we had left her in there longer and ignored her promises- telling us she would continue to eat once she was out, because she hasn’t done that. Even the threat of hospital doesn’t get her eating enough, and she despised her time there. It’s a really tough illness, take all the help you can get for as long as you can get it! You will have plenty of time once she’s out to practice feeding her despite her resistance, take a break from it now
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Adlih64
Thanks Valentina, home passes were the way I was thinking.  I really don’t want her having the message that it’s because weight isn’t low enough and I was also annoyed at this nurse (if it’s true) as there’s no point in reintroducing dairy just to take it away again. 
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Foodsupport_AUS
You are right to be concerned. No one was really supporting you before her admission until she was becoming critically unwell. I too would not really expect her to be able to do better at home. My D like yours commonly could not eat at home. Mostly she managed to eat in hospital, if she couldn't eat there was NG tube back up. Out of hospital this didn't happen. She needed that back up to be able to eat.  The cycling in and out of hospital only made things worse. 
I would be pushing for continuity until you feel confident that she is will be able to keep going. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Adlih64
Thankyou kookaburra and foodsupport - hearing from personal experience really does help make things clearer
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mid73
I am shocked that they are even thinking you can do this at home yet. My d was admitted at BMI 15.5 because we were making no progress after 8 weeks and she was violent if we tried to push higher calories, we never had 48 hour starvation situations. I think ultimately you have to continue recovery  with FBT at home but I think that will be very difficult for you until your d has gained considerable weight. My d ate her way out of hospital but was not fully discharged until BMI over 19.5 and could consistently manage several days at home without issues. We then kept up control of food for a year before we handed back any control to her. So when she was at school meals and snacks were supervised. Then a year of her mostly managing and now has relapsed. She’s 17 now, I’m trying to do FBT again but the same issues are arising.
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Adlih64
Hi mid73

I did feel shocked also so it reassures me that I am not overreacting.  My daughter is very stubborn by nature and whilst I would like to think I could believe that we could now manage and she will comply think it’s unrealistic just now.  I am so sorry that your daughter is suffering through a relapse it must be heart breaking for you to watch is happening over again.  
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Kali

Hi Adlih64,

I'm shocked that a bmi of 15 and the fact that you have had extended periods of food refusal at home is not considered critical. (not wanting to scare you of course—many people have been through this and come through the other end) The decision is up to you whether you want to bring her home or not of course but I would point out a few things:

The fact is that you did try at home and the illness was very strong. You saw lack of cooperation. She was not able to eat. A vegan diet. An intake of 500 calories a day. Refusal to be in treatment or be weighed. Some days of complete food refusal. At this stage in the illness she will say or do anything to get out of eating (which she is doing on the unit) since she may believe that if she comes home she can go back to the way things were before. And I'm not sure what your situation is. Are you able to be home and feed her 3 meals and 2 snacks a day and turn your home into a treatment center for serious weight restoration, or do you work outside the home? If she continues in school would you be able to meet her for lunch every day and insist that she eat? What support would you have at home if you did refeed her there from family and professionals? Refeeding can involve 3000-4000 calories a day and the goal is usually to gain between kilo or kilo and a half consistently every week. At a bmi of 15 she needs to be monitored frequently by an md for her electrolytes and heart function. The fact that she is eating on the unit is excellent and the important thing right now is that she eats so maybe she should remain there and continue to eat. My daughter was so ill that I felt ill equipped to refeed her at home (I did try for 14 days but failed to get any weight on her in those two weeks although she didn't lose anything) so she stayed in the hospital until her bmi was 20.5 and she stopped purging, and was started on medication for depression, and only then I agreed to have her home again. When she did come home after 3 months, she said she never wanted to have to go back again and I said "well then you will need to eat enough—for the rest of your life. If you don't then you will go back". It is 3.5 years since she left the hospital and has not needed to go back.

Why not push for the unit to keep her there until her bmi gets up to say, 19.5 or 20 and then bring her home with a strict followup protocol and an FBT outpatient team and the understanding that if she loses weight she goes back? Since she has previously refused to consent to treatment and had to be brought in under the MHA, in your shoes I might be wary of bringing her home because it might not be that easy to get her there again if there is a next time. What lesson is she learning if she refused to eat, is inpatient now and then they let her go home again and she can again refuse to eat? And you mention that your husband works away alot. Would that mean that you would need to refeed her mostly on your own? Do you have other children that you are caring for as well? These are all things to consider.

And in what alternate universe is a bmi of 15 not considered "low enough"?????? That saddens me. It is certainly low enough. I hope that has not been communicated to your daughter.

You certainly have a lot to consider and think about and I hope that things will work out what ever you choose. We are here to support you either way in any way that we can.

warmly,

Kali

Food=Love
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ValentinaGermania
Adlih64 wrote:
My daughter is very stubborn by nature 


These kids all are, Adlih64....😂
Keep feeding. There is light at the end of the tunnel.
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Torie
We were JUST BARELY able to refeed at home.  Had the case been any more difficult, that would not have been possible (another few weeks and we would have been beyond the point of refeeding at home).  Your case sounds more challenging - no judgment there; most diseases have easier and harder cases.  I would fight like a dog to keep her there.

I like Tina's idea of gradually trying home meals. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn
A few thoughts  I have.
she is only been IP for three days. They don’t really know how she will eat for even one week. They admitted her due to lack of eating no matter what the weight is she is there because she needs to be. End of. No food =admission until able to eat. 
Everyday there should be an assessment of her mind and intake. At three days they likely have not seen weight go up and establish eating everything. That takes longer than 3 days!  Their job is to get the routine of weight gain eating going  and that they tell d that this will be the same as at home. Premature thinking on their part
to consider weight is ok to be home!! 
My d was admitted for 3.5 weeks and everyday we had to ‘do’ something. After the first week of the hospital feeding her, we were told to supervise as many meals as
possible in my d IP room. When d got upset the team helped me to get her to 
finish her food.
Then we were to take her food  to  the Ronald McDonald room around the corner to eat on the same ward. We were to then bring a homemade meal in a few times, go to the cafeteria etc for snacks. She came home one day for two meals. Then overnight etc... 
it was graded feeding over time with us. I think it did help... ME to get the routine going with IP backup. I appreciate that things are so different around  the world, but would they agree to a graded movement to discharge?

I know hospitals are stretched for beds but if they let her go to early she will bounce right back to them. The more time she spends there the better for all involved. Explaining to them that a longer IP stint may decrease readmission in the long term may help them
see it in their terms. 
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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melstevUK
Adlih64,

I can tell you right now that the problem will be that the consultant will be really worried because guidelines for sectioning usually recommend that a section can be put in place around a bmi of 13.  It would be unusual to section at a bmi of 15 although not totally impossible.  I think that he will be scared that he has made himself open to criticism.  Is your d taller than average?  The taller the person, the more sick they can be at a higher bmi.  However, he was justified in using the section because your d had not eaten in 48 hours and nothing was going to work out with a section.

The fact is, your d was and is unable to eat at present without that section in place - so I would take the initiative and say that you do not want that section lifted because it is having the effect that it was intended to have.  

Was she weighed in her underwear and was she checked properly and that there was any hiding of weights?  My d was planning to hide batteries in her bra at one point.  I would question them about that.

The dietitian clearly recognises the extent of her illness and that is a good thing.  I doubt very much that a nurse said she could eat what she wants at home - I suspect that will be the ed talking.

Stand firm - great that she is eating dairy because the veganism was a part of her illness.  Some units are moving towards providing a vegan diet but they are in the minority.  

You do not want her back at home doing FBT with her until her weight is much higher.  If the section is lifted and she gets home - the ed will have won.  She needs the support right now.  Of course she will be crying and promising and trying to reassure you that she can now eat at home - that is the ed which is like a siren pulling you onto the rocks and you need to see it that way.  The hospital need to get her eating regularly and accepting things she used to eat before, before she is returned home.

Stand your ground - you have that bed and do not give it up until much further down the line.  Of course she will hate the section but that is normal - how long is the section in place for?  I am not sure what the minimum time is that a section can be used for with eds.  The minimum period was for a month when my d was IP - but things may have changed now.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
I seem to remember that parent burnout (probably a different word is used) is a factor they consider in deciding about a higher level of care.  I would be sure to stress how overwhelming it is for you - a layperson - to try to care for someone this ill in a home setting.  Just a thought.

Best of luck with your meetings. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Jeanette

Hi,  
This all sounds so much like how my gd was/is.   Her bmi is 15 and CAMHS wouldn’t let her go to school at all since the summer holidays not just because she wasn’t eating but because it would use too much energy.   She was put on a 3 day section a week after going into IP which was later increased to 28 days and it is this that is enabling her to eat as she doesn’t want to be tubed.  She is now on a section 3 which can last for up to six months but can be lifted if necessary. It is a treatment plan and we didn’t think she needed it as she was eating but she had told them that she planned to lose weight again when she came home.   Of course she has been very angry and blamed my d for all of this but has stopped moaning about it now.  She is still angry about other things though!  Btw, she also saw an advocate to try and stop it but, as all the doctors, consultants and psychiatrists at IP agreed it was needed, it didn’t make any difference. They are there to represent the patient only. 
Your d is in the best place to start eating again and I wouldn’t let them take that away. X

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