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yellowcaty

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Reply with quote  #51 
Hi

Thank you for all your support and good wishes for today's weigh in. Well she has lost another kg in 6 days. She was also weighed later in the day than usual and after breakfast, lunch and snacks. She won't usually eat before she is weighed. I am absolutely flawed and deverstated. I had prepared myself for no gain, but not for this (I know it might not seem a great loss but this is the 3rd week of weight loss). She didn't have the best of weeks but did eat. The diatician calculated how many calories she would have had based on our discussions and said there is no way that she should have lost so much. So I need to pick myself up and try harder this week. Any suggestions would be greatly appreciated or ideas as to why she is still losing weight.

Sorry beeessbee, but I can't offer you any advice, but sending lots of hugs as it is so hard when their mood is low.

Thank you
Yellowcaty
beeessbee

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Reply with quote  #52 
HI Yellowcaty

So sorry to hear that there's been more weight loss. This is so very difficult isn't it? Did the ED team mention the possibility of a higher level of care in hospital? Did the dietician give some ideas about how to address this? So new to all this that all I can do is say that I'm thinking of you and hope you get some good advice from those who have had more experience and from your ED team. 

Big hugs.
Beeessbee
yellowcaty

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Reply with quote  #53 
Hi Beeessbee

Thank you. This is definitely the hardest thing I have ever had to do. The doctor mentioned hospital again, but still as it may be something we will have to consider if things don't change. I'm not sure how bad things need to get. Her bloods and physical examinations are all fine, so I'm not sure if that makes a difference. The dietician has just added more food to each meal. My D agreed to this, but I'm not sure how she will be when she has to eat it tomorrow. The dietician seemed more annoyed this week. I came away feeling like I was being blamed. The doctor is really good and supportive but also concerned that things are not getting any better. We haven't seen the specialist nurse for two weeks and there was no mention of her being back next week. She is the one that usually gives me the support, so I am missing this.
beeessbee

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Reply with quote  #54 
Yellowcaty - are you able to ask to see the specialist nurse? Interestingly at our CAMHS, she is the main point of contact so I am able to call her and speak to her directly and get some support that way. It might be worth asking if you could see her/talk to her?
Torie

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Reply with quote  #55 
Quote:
Originally Posted by beeessbee
My Dseems to be eating reasonably again after some significant resistance. But now she seems really very low.  


Yes, well, there is never any way to tell what tomorrow will bring.  Sometimes a really bad day pops up inexplicably, and sometimes an okay day follows a really bad one.  The only thing you can really do is take it one day at a time, or one meal at a time on bad days or one bite at a time on really tough ones.

The only thing that really matters is getting the food in.  Upping the fats by adding in butter, cream and oil wherever possible.  Limiting the vegetables.  Sucks that your d is suffering, but food is her medicine, and better days will come.

Keep swimming.  xx

-Torie

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

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Reply with quote  #56 
Quote:
Originally Posted by yellowcaty
Any suggestions would be greatly appreciated or ideas as to why she is still losing weight.


Unfortunately, the first thing that comes to mind is the possibility of purging.  If you aren't already doing so, I suggest you require that she use the bathroom before each meal so that she will be able to stay with you for at least an hour after every meal.  Even so, I always listened at the door when I knew my d was in the bathroom.  Time and time again, forum members have faced an unwelcome surprise in this department.

Another possiblity is hypermetabolism.  Unfair as it may be, our kids' metabolism tends to kick into overdrive when adequate nutrition is once again available.  Mamabear's d needed upwards of 6,000 calories per day for a loooong time to keep up with fueling growth and needed repair work.  

I think the only thing to do is increase both vigilance and calories.  I know - ugh ugh ugh.

It's so hard and soul crushing when the weight goes down even a little.  Such a tough, tough battle.  

Sending a huge cyberhug to you, along with a big thump on the head to the boorish dietitian.

Hang in there. xx

-Torie

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

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Reply with quote  #57 
Sorry to hear that she has continued to lose weight. It is often hard to predict what is going to happen, but even the fact that she didn't eat prior is going to be a factor. If d cannot follow the new meal plan, are you going to push for a higher level of care? It seems as though you have been left to drift along for more than 3 months without any improvement in your D's condition. SOmething clearly needs to change here, and very soon. I would recommend becoming the squeaky wheel, insisting that something more be done, whilst continuing to work at getting that increasing food in. 


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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.
tina72

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Reply with quote  #58 
Hi yellowcaty,
normally there are three possibilities:
Nr. 1: She is purging secretly. I do not hope so, but it is possible. Check that.
Nr. 2: She is hiding food. I know you are checking that, but in the hospital where my d was a girl did that in front of the nurses and they did not see it. They are very tricky with that. So do keep your eyes on her while eating 100 %.
Nr. 3: There are not enough calories on the plan. A lot of patients to have hyper metabolism and even the professionals often do not realize what amount of calories is needed to gain weight. The nurses in hospital tried to make my d gain weight with 1800 calories a day, no joke. That is not possible.

I know how hard that is for you. Please don´t feel blamed. Nobody without ED in the house can understand what a war refeeding is. It is so difficult to get that start with gaining weight. We needed 6 weeks (in hospital!). But you will get that.
Did you try smoothies?
Tina72



yellowcaty

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Reply with quote  #59 
Hi

Thank you for all of your support and advice.

We have thought about a higher level of care and even her sister suggested last night that it might be the best thing. When she was first diagnosed it was a real possibility, but as all her tests are fine now I think that is what is stopping it.

We did have a big problem with purging at the beginning, but we have worked so hard to stop that. She always stays with us for at least an hour after eating. The sickness has started to creep back in but only late at night a long time after eating.

If she agrees to food at the clinic she will eat it. It is always a chore, but she doesn't put up as much resistance as others I have read about on here. She will only eat what had been agreed and no more. What I don't understand is that she previously had put on a little weight on fewer calories. She didn't like putting on weight and would always try to counteract it the following week, but that doesn't seem to be the case now.

I just feel like I am missing something. There is definitely no exercise that we have seen and the only change is that she has begun to drink lots of green tea and wants lemon in her water.

This week I was so shocked that I didn't say anything at the clinic. I am going to go armed with questions next week and enquire as to when we will see the specialist nurse again.

Thank you again for all your help. It is so scary at the beginning. Hopefully soon I will be able to repay all of your kindness by being able to give advice to someone else.
tina72

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Reply with quote  #60 
"the only change is that she has begun to drink lots of green tea"
That may mean that she lost more than you expect now. Some drink up to 3 l a day and that mean 3 kg on the scale which are not there in reality. She may be water loaded.
So you might need to cut out that green tea thing. That is ED behaviour. She needs to drink something with calories at least with the meals.

"What I don't understand is that she previously had put on a little weight on fewer calories." That changes quickly while refeeding. In some weeks we had weight gain with 2000 calories, in some weeks only with 3000. Metabolism is a top secret thing ...[wink]

"If she agrees to food at the clinic she will eat it." She needs someone to blame for the food intake. She can eat if she tells herself "say said in the clinic that I must eat that". So maybe you get a change if you ask the clinic stuff to tell her that you are in charge (that is what real FBT wants them to do). Then you are the person to blame (no nice role) and that might be easier. You need to change the plan quickly if needed and you need the power to do that. She will hate you for some time but she will be able to eat what you serve if she can blame you for that.

Tina72
juditab

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Posts: 10
Reply with quote  #61 
ED sufferers are very clever when it comes to disposing of food. My daughter emptied her high calorie drinks, refilled with water, recapped and put them back into the fridge. It took me a week to figure it out. I finally noticed the safety seals were all broken. Really give some thought to how the ED is sabotaging your efforts. Are other drinks diluted? Check the trash. Don't let her get up from the table with food in her mouth because it will definitely be spit out. My d got pretty good at hiding food along the ridge of her plate where we couldnt see it sitting opposite of her at the table. Closing these loopholes is all part of the refeeding process.
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