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aprilmay

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Reply with quote  #1 
i never liked the game "chutes and ladders", and now we are in some black hole vortex of this game. This week we went from what i thought was at the top of a ladder right down that chute to square 1.  My daughter and i have been in FBT for AN since January, and her weight went from a low of 114 to 125.  Not her goal weight, but getting to that and a huge transition in her emotional well being.  I thought we were over the hump.  The initial refeeding was so hard and i didn't recognize my daughter.  Tears and battles over eating.  It almost broke me and my marriage.  And i thought we turned a corner.  Meals were better, She was back playing lacrosse, more social, happier etc.  We went on a vacation and she did great with eating.  Like someone with a normal relationship with food.

I waited a few days upon return from our trip to weigh her and she was 121.  That was OK, and i knew i could get the weight up quickly following our regimen. And then yesterday i weighed her (she wasn't expecting it) and she was 112.  Lower than she was when we first entered treatment.  i learned she had been water loading and also putting weights in her clothes when i was weighing her.  Probably the same at our weekly sessions at CHOP as she was weighing in even more there.

And today we had the same battle we had with initial refeeding.  Tears and snot streaming down her face and her pleading with me telling me she cannot eat.  She was like a little wraith sitting at the table.  It's breaking me. I don't think i have the reserve to do this again.  I feel like FBT has been a waste of time, as we sit there and she says nothing.  She needs someone she can really talk to and its not happening in FBT.  Before the AN, she was self harming, so i feel like there is some underlying reason for her pain and we have not been able to find it.  

Does anyone have suggestions other than FBT?  
thank you


debra18

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Reply with quote  #2 
Is it possible she was lower than 114 to begin with and she did something to wiegh more at the initiatial weighing also? It seems like she was making progress if her mood improved and she was eating. There will be always ups and downs and her low mood was probably because you caught her making herself weigh more.
scaredmom

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Reply with quote  #3 

Hi Aprilmay, 
I am so sorry. You are really still early in the refeeding part. It took us 6 months, a HARD 6 months to get to her first target weight and that was not enough. At 5 months into refeeding it got much better.  You know what to do and yes you need to do this again. It took us 5 months to really get a handle on ED "tricks" as I call them. D was throwing out food, hiding it in the piano bench, in the basement standing all the time etc.... It is really a sucker punch isn't it?  It has happened to many of us (ME a few times). But now you know, and you will need to plug up the holes. You are smarter than ED. You got this and you have us to come to for support and advice. 
"feedback not failure" is the saying here. As you learn what is going on you will learn to outsmart ED. 

Regarding therapy for her, her upset and anxiety etc could be due to ED. I found my D's mood got better with food and the anxiety got a lot better and she is doing well now. We are still doing FBT it is one year. The recovery takes a long time. Up to 7 years or as little as three. You are still so early in this. I know it is hard. Please take care of yourself and your marriage too. 

XXX

Food+more food+ time + love= healing---> recovery (really this works- big hug) 

Mamaroo

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Reply with quote  #4 
Hi AprilMay, so sorry it was a tough day. The early days of refeeding are very hard.

My d drank very little water, but on the day of her medical appointment, suddenly she would drink half a litre water! ED can be very sneaky in that way. Make your treatment team more aware of weights in pockets and water loading when you see them again. You idea to weigh her unannounced is a very good one. You can do that more often to discourage deception.

"I feel like FBT has been a waste of time, as we sit there and she says nothing."

Same here, my d would hardly say a thing. I used those sessions to get ideas on refeeding and to discuss other problems, such as school and sleeping. Give it time, as your d's weight goes up and she gets to know the therapist better, she will open up more and participate more in those sessions.

"She needs someone she can really talk to and its not happening in FBT.  Before the AN, she was self harming, so i feel like there is some underlying reason for her pain and we have not been able to find it."

As her weight is now below the 50% for her age, it is really hard to see what behaviour is due to malnourishment and what was there long before AN came into your lives. I have 2 daughters, the oldest was and still is a nervous wreck, worrying about everything, seeing the glass half empty. My younger d (who got AN) was born happy, always laughed and saw the glass as half full. All this changed when the first signs of puberty came at age 9. Suddenly she was scared of everything, she doubted herself and became super sensitive to whatever people would say to her. She started to over exercise and cut out food. She spent her 10th birthday in the hospital to stabilise her heart. During refeeding she selfharmed and ran away. Now (12 years) she is weight restored for a year and is back to her happy self. When we first started with treatment, we didn't try to address her anxiety as a separate issue from the eating disorder. The aim was to get her to eat again, gain weight and then assess her after 6 months to see what additional psychological support she needed (she didn't needed any). That is way it is so important to get the weight on first. Even if there were issues before the eating disorder a malnourished brain can't deal with it. 

"Does anyone have suggestions other than FBT? "

Sorry, no I don't. There is not much research to look at the effectiveness of different treatment options, however FBT outcomes have been studied and found to have a much better outcome than other methods. Here is a link to an article on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1414759/#__sec2title
A short quote from the article:
"The involvement of parents in the treatment of their AN offspring appears beneficial, but conclusions can only be made provisionally. FBT encourages parents to take an active role in restoring their adolescent's weight and, for now, seems to have some advantages over the more "routine" advice to parents, which is to involve them in a way that is supportive and understanding of their child, but encourages them to step back from the eating problem."
"Based on current evidence, albeit limited, FBT appears to be the treatment of choice for adolescent AN. This elevated status must be tempered by the lack of research on other treatments for AN. For instance, EOIT shows good promise as well, but has only been employed in one controlled study (35). Moreover, CBT or psychodynamic treatments for AN are described in the literature (49,50), but have not been systematically evaluated, and their relative merits in comparison with FBT are not known. Similarly, MFDT (27) is a promising new development, but as yet there is no systematic evidence for its effectiveness. However, the Maudsley group is currently engaged in exploring the efficacy of this intensive treatment more systematically." 

So although not an easy method, it is still the best way to treat a child with AN. It takes a lot out of parents and takes a toll on the whole family. It took me 7 weeks to get my d just to follow the mealplan and several more months to get her to eat normally. In total from IP to WR it took us a year and then a further 6 months for brain healing to start to take place. This is not a sprint, but a marathon. Make time to take care of yourself.

Let us know where you are struggling, so that we can better help you. Here are plenty of carers who have seen it all and I'm sure there is someone here who where in your shoes. This is a great place to get ideas and encouragement or just to vent after a bad day. We understand!

Sending you lots of hugs!!!!

__________________
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 a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Foodsupport_AUS

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Reply with quote  #5 
Sorry that things seem to have become worrying again so soon. 

A few thoughts. You felt that your D was doing better with her apparent weight gain. The options are of course there was no gain and she was doing "better" because ED made life easier because she was cheating the system. The second option is that she really was doing better, she was eating better and gaining weight and only recently has she started to drop weight and spiral down again. We can often lose sight on holiday of how active they are. My D has also lost weight on holidays several times despite eating very well. 

I am sorry to say that it is early days, and the first and foremost part of D getting better is going to be getting back to her eating better and regaining lost weight. It may not be the only thing but whatever strategy that is used to help her is going to involve that re-feeding and home is often the best place for this to happen. Other treatment modalities eg. CBT-E, inpatient treatment and even things such as mandometer have limited evidence bases and all involve eating better as their number one goal. Trying to work out the cause of her anxiety or distress prior to ED is unlikely to improve her nutritional status and whilst she is malnourished she will have anxiety, depression etc.. 



__________________
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.
aprilmay

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Posts: 7
Reply with quote  #6 
thank you all for your responses and support.  Today is a new day and i will stick with the plan.  refeed first.

best to all of you😉

tina72

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Posts: 1,043
Reply with quote  #7 
Hi aprilmay,
sorry that you discovered that and that you feel to be back to square 1. I think you are not.
First: You know what to do and how to add calories. You seem to be able to get her to eat what you serve. That is great. You know now that you need to add more calories.
Second: You know now that she loaded water and put weight in her clothes and you can avoid that from now on. Weighing in underwear. If you feel she could put something in there, too, give her special weighing underwear set which you keep and she is asked to put on only for weighings.

"We went on a vacation and she did great with eating.  Like someone with a normal relationship with food."
This sentence rang a bit my alarm bells. If she really ate normal in this vacation and did not gain weight, are you sure she is not purging? Or secretly exercising?

" I feel like FBT has been a waste of time, as we sit there and she says nothing.  She needs someone she can really talk to and its not happening in FBT.  Before the AN, she was self harming, so i feel like there is some underlying reason for her pain and we have not been able to find it."
FBT is working with refeeding. She cannot say anything and it will not help her to speak to someone because she will not have the wish and the insight to get better, that is the big problem with AN. As long as the brain is malnurished, you can only help her with food. Food and Food. With a lot of fat and glucose because that is what the brain runs on.
She might have underlying problems with self harm, but that can have nothing to do with the ED. An is a genetic disease. If you have the gen defect and lose weight (whatever is causing that, in most cases it is a diet or over-exercising) you cannot stop it. Are you sure the self harm was there before ED or is it possible that it was there before YOU found out about the ED? In most cases self harm is a consequence of AN.  

It needs a lot of time but it does get better. Food is the medicine. With every kg my d gained she came back in small steps. After WR and additional 4 months we saw the first big change. Her mood was much better and the ups and downs more regularly. We had a colored diary: red for bad days, yellow for days that seem bearable and green for good days. At the beginning of refeeding we had nearly only red days and some yellow ones. After the first 5 kg weight gain we sam the first green days. Then we had mostly yellow and green ones and nearly no red days any more. Today one year after WR we have nearly only green days and I would say one yellow in a month.

It is hard to see that you are not at the top of the ladder. But you know what to do. Increase her intake. Add butter, cream and oil to everything possible.
Do you know Benecalorie? This are small containers of 44 ml and 330 calories and it is without any taste. You can add it to yoghurt, pudding, porridge, sauces, soups...great stuff.
Keep swimming. Refeeding is the only way. Come here to ask and vent. We are here.

Tina72
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