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islandmum

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Reply with quote  #1 
Hello all

Just introducing myself. I am so pleased to have found this forum (and Eva Musby's book) after floundering for so long in the dark.

My daughter was admitted to hospital a few days before Christmas for an early intervention. She has suffered with anxiety and possible OCD for a few years and ED has raised its head a couple of times in the past but came to nothing then. In September she began restricting severely. In November we were referred to CAMHS and she ate less and less every day then stopped altogether. She was admitted due to dizziness and chest pains but was not severely underweight.

She was put on an eating plan which she has done really well sticking to, but yesterday be had to start increasing portions and her mood crashed again. She self-harms and although that had been under control, she cut herself again last night so I had to sleep in with her. She is very distressed about the eating plan making her gain weight when she wasn't severely underweight to begin with....how do you respond to her sobbing about being fat when she clearly isnt but there is no point in trying to make her think logically or see it any other way. My attempts at reassurance, that we are trying to stabilise her and not make her gain weight, just make her angry. Do I just let her be angry and not respond or do I continue with the logic and rationality knowing that it isn't going to persuade her as it isn't her with whom I am having the debate, it's her ED? She is extremely bright and in the past we have always had healthy and intelligent debates and discussions about all sorts of grown-up issues. So one of the hardest things for me is seeing her lose that ability to think and reason.

Anyway, sorry for waffling on. I feel we are at the start of a very long journey and will be glad of your support along the way.
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum. Sorry that you have had to find your way here. This is a counterintuitive illness. Many people who become ill are smart, kind, thoughtful and contemplative. The natural response for many of those parents who have such children is to reason with them when they become mentally unwell. Unfortunately that reasoning truly does fall on deaf ears. Your D doesn’t want to gain weight, that is a normal and expected part of the illness. Even though she is not significantly under weight it is important to remember that those acute symptoms she has had are likely to be due to malnourishment, and as such she is likely to need to gain weight. Food is her medicine, somI would suggest changing the constant broken record to a new track. She needs to eat to get well. If possible avoid all discussion of weight gain, or entering interest the I am so fat conversation. We have all been drawn in at some point, but the sooner we start to be able to not be drawn the faster we can all move on.
__________________
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  #3 
Hi islandmum,
I send you a warm welcome from Germany! It is great that you found us here. You will get a lot of help here.
You don´t need to say sorry for anything. Come here if you need to ask, to vent, to waffle. There is no other place in the world where you can find others who know what you are going through right now 24/7.
To answer your questions:
It is great that you caught it before your d was severly underweight. But she still was malnurished and that is the problem. ED patients need a lot of fat and that is what is restricted first. So she needs to gain some weight and to re-add all that fat she lost to heal her brain. The brain is mostly made of fat and it is not working in the right way when she is malnurished. Have you ever seen a diabetes patient with low blood sugar? They cannot speak or think normal and so it is with your d at the moment.
The good news is, that the brain is a wonderful organ and it can heal. It takes nutrition and time. My d was malnurished for 9 months and we needed 6 months to get her weight restored. Then it took 4 more months and now she can think nearly normal again. Her school tests were bad in this time (although she is gifted with high intelligence) and now they got better to nearly normal standard. I say this not because it is important in any way for me just to show you that it will get normal again after some time.
When my d sobbed about the weight gain or about being fat I discovered the best thing is to show compassion ("I know that this is hard for you", "Hmmm", "You feel really bad about that, do you?") and then change the subject quickly. It is lost time to discuss with her on something she cannot understand at the moment. She just needs to feel that you are with her and understand her. If she discusses about the food plan or portion sizes just say "they give you only what you need, not more and not less". And then change the subject. So no time for logic now, but you will get your discussion partner back [wink]
Try to calm her down as much as possible and to distract her. That will hopefully stop self harm. Try to give her something to do with her hands if she wants to cut herself, maybe a stress ball or some soft ball to throw against the wall. She needs something to take the agression and anger. We bought a punching bag for our d after she came home from IP and that worked good for us (and I used it nearly as often as my d).
If she is in hospital now I would give you two advices:
1. Do something nice for yourself to get some power before she comes home. Try to sleep as much as possible and get your head free for some time.
2. Use the time to fill your fridge. Cook heavy meals with cream, canola oil, cheese added. Freeze portions. You can cook without being watched now and you will need much food when she is at home again. She will need a lot of food just to hold that weight gain. My d is now 12 months in refeeding and she still needs to eat a lot more than her friends just to keep that weight. They often have a metabolic digestion.

So feel free to ask whatever you need. We are all here for you.
Tina72
Torie

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Reply with quote  #4 
Hi IslandMum - So sorry you needed to join us here.  

It is so weird how this vile illness scrambles our kids' minds.  Our formerly rational kids just cannot think rationally about food, calories, size, shape, weight, or anything related.  Although they are often fully rational about everything else, they just aren't rational at all about things ED related.  It took me a while (and some false starts) to believe the good folks here who told me to stop trying to reason with my d about these things.  The best thing for us was a brief empathic statement (e.g., "I'm really sorry this is so hard") followed by a swift change of subject.

It's important to avoid making promises about future weights because there is no way to know how much will be enough.

Quote:
Originally Posted by islandmum
My attempts at reassurance, that we are trying to stabilise her and not make her gain weight, just make her angry.  


I fell into the trap of telling my d what I thought she wanted to hear but then lived to regret having done that.  You NEED to "make her gain weight" in order to drag her back to health.  You have no way of knowing how much weight that will be, no matter how confident the "experts" are in setting a target weight.

I'm really sorry it is so hard.  I remember the days when I had to sleep with my d because she was cutting and suicidally depressed.  Ugh.  Such a dark, dark time.  But it DOES get better.  It really does.

Hang in there and please feel free to ask all the questions you like. xx

-Torie

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

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Reply with quote  #5 
Dear IslandMum, it is so hard to hear your child being so upset and hearing their self-loathing. It is very tricky to respond to that - how to validate their feelings without validating the self-criticism, something that is not valid... And yet validating feelings is essential for someone who struggles with an eating disorder - ED is often viewed as a way to cope with difficult feelings. When the brain and body are starved, emotions often feel less intensely and therefore it can be experienced as positive  and further reinforce ED. Most people with ED are "superfeelers" to begin with. Learning to recognize, label and express emotions is the paramount of ED recovery, in my experience.
So how can we validate when someone says: "I am so disgusting, I am so fat?" some examples: "I can only imagine, how awful it must feel for you right now to feel so terrible about your body". "you seem in so much pain right now, so uncomfortable in your body." "shame is such a horrible feeling, it makes you want to crawl away and escape the world". And only after validation you can add some reassurance: "I am so glad you are telling me about it, I do not want you to be alone with those feelings" "and I can reassure you that I do not see you this way". 
it can be scary to talk about those things and articulate them out loud. But the truth is you cannot make them to feel worse by just naming it, it is the opposite: by naming those things, you are joining them - so they are less alone with those feelings and also you are giving the message that "I can handle this, I am not scared of those feelings and ED".

This is a link to a free Emotion coaching webinars that you can find helpful - plus all the other resources on that website.  
http://www.mentalhealthfoundations.ca/parent-coaching
I hope this helps.

islandmum

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Reply with quote  #6 
Thanks to you all for taking the time to reply and for your helpful advice. I find her worst time is late evening. She can seem fine and then suddenly out of nowhere plummets into a pit of despair. Is that typical, such huge and sudden mood swings?

We are just taking one day at a time...one hour at a time...I am not sleeping in her room tonight (at least not at the moment) and have tried to lock away anything with which she could injure herself. She has promised to wake me if she feels that urge. I hope she doesn't need to and will keep one ear open all night...

Thanks again xx
Foodsupport_AUS

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Reply with quote  #7 
Wild swngs in mood seem to be something that is common with ED. My own D and I were discussing this last night. She used to find the emotional waves overly intensely, remembering that many of our children can be described as sensitive to emotions anyway. As she has got better the frequency of those tidal waves has lessened and she says the intensity has dulled too. She still at times ahs to use her new skills to deal with those waves. She is now 4 years post cutting. At one stage it was daily. Again she still gets that odd urge, much less than before, and she can now master that urge as well.
__________________
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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Posts: 496
Reply with quote  #8 
Hi islandmum,
the mood changing so quickly is quite typical. We called that "shut downs". At the beginning she had that really often and with constant food intake it got less. She discovered that shut downs came with low blood sugar when she was not eating at the right time. She has to eat at least every 4-5 hours to avoid those shut downs. Today she has a muesli bar with her in her bag all the time and if she is late with some food or it is more than 5 hours she eats one because she wants to avoid this mood herself. Constant blood sugar level through the day seems to make that better. Today we have that once a week or so.

Evening was/is the worst time for our d, too. She has problems with the darkness and with being alone in the evening so she mostly watches TV with us and then goes to bed quite early. Try to give her some distraction with playing games or watching TV or reading a book with her in the evenings. It is the time when ED is blaming her most for all she has eaten during the day.
Just keep on going, day by day. You will see some progress with every kg she is gaining. The steps are small but if you watch her carefully you will see that she is getting better. She will not argue so much any more and she will get a better mood.
Tina72
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