July 17, 2011

Why we do it

I'm proud to be part of F.E.A.S.T.'s work to empower parents around the world to  do the incredibly difficult parenting that an eating disorder diagnosis requires.

I'm on vacation right now and hoping to refresh and reflect and re-group. I happened to stop over at my messages last night and want to share an example of why all of us at F.E.A.S.T. do what we do - so that a family can do what IT needs to do:
Our story so far...
First sign.... April 2010 - d has just turned 11 and we are on holiday in Italy. I notice she is wanting to order salads in restaurants as opposed to pasta and pizza. I ask her what is going on and she says she wants to eat healthily. I tell her that her diet is already healthy and that she is not to just eat salads as she is a growing girl. She seems okay after this and eats a lot of Italian ice cream. 

In the summer holiday, she looks thinner but I put it down to her growing so much in height. She eats well at home and has never been picky or difficult with food. I reassure myself she's eating fine. In hindsight, she spent a lot of time in holiday clubs and clearly didn't eat enough. 

October 2010 we have family visiting and she seems to be eating all the time, very healthily but lots of food. No sweets though and she is very health conscious, asking so many questions about calories and fats!!! We discuss the dangers of dieting again and she asks why it is I have a problem with her wanting to be healthy and why I want her to eat 'junk food'!? Take her to doctor who says her weight is fine and that it's not unusual to look thinner during a growth spurt. I back down. Again I reassure myself that she is eating okay and that I'm paranoid. 

December 2010 I'm worried and confused. She is still eating a big dinner but now losing weight and something is not right.  I've asked her to keep a food diary and note down how she feels about eating. She complies, laughs and says I worry too much. I tell her I think there is a problem and that I will take her to the doctor again if she doesn't pay attention to eating more. She gains a few pounds and continues her diary for a couple of weeks. It later turns out that d is not eating at school. She is also skipping breakfast, pretending to have cereal when I'm in the shower in the morning. I feel stupid for having missed this.

Feb 2011 we have a massive confrontation about her eating and weight. She is now losing weight suddenly and quickly. Portions are getting small and she eats in a mechanical way. I get her height/weight chart out and shocked to realize she is 10lb down from the same time last year. I'm in a blind panic, certain we are facing an eating disorder. 

I take her to the doctor who now agrees and refers us to our local mental health team (we're in the UK). As we get home from the doctor, I serve d lunch and she bursts into tears and says she can't eat it. Her body is shaking with anxiety and she is begging me not to feed her. After that we can't get her to eat at all, even water is an issue. H and I are so scared.

I ring Mental health team and cry hysterically to get an emergency appointment. They see us a few days later. 

Hospital tells d to  'try and eat as much as you can' and and us to  'not make meal times more stressful by pushing food on her'. They send us home with a piece of paper, suggesting 3 meals and 2 snacks a day. Are they completely insane I think! We know what and when she needs to eat, it's that we can't get her to do it!!   They say it's important to take a balanced approach and go easy. What are they talking about? To H and I, going easy means watching d kill herself. 

A week later,  d is passing out, low BP and heart rate etc. It's all happening so quickly. We don't know what to do.

Early March 2011. I read all the books and articles I can get my hands on and quickly find FBT and also Laura's book. Hospital thinks it's too radical and keep talking about a more balanced approach, how d needs to want to eat and that we can't monitor her all the time. I disagree. They are not impresses and neither am I.

We start re-feeding regardless. Food is first. No school. I take time off work. D goes crazy. Violent, abusive, smacking her head on the wall, screaming etc. Even her voice seems to have changed. It's like a horror movie 'alien body snatch'. Where's my little girl gone?  We are so scared. H goes away for 3 weeks with work. With me off work I tell him to just go, I'll manage. Yeah right! Within a week I'm on my knees. ED is much stronger than I imagined.

Meanwhile the hospital has asked d about purging and exercising so many times that she is now determined to try this out (seems to be what other anorexics do so better get started!!). Starjumps and sit ups in her room and fingers down her throat. How quickly she learns. She is now even scared to swallow her saliva. We have to observe her 24/7. When she refuses to sleep in my room, I sleep on a mattress in the hall outside hers. People ask what it is we think she'll do in the middle of the night. That's the problem.... we really haven't got a clue, she is acting so crazy anything could happen.

April 2011. Hospital don't agree with our re-feeding regime. Even tell d that she is putting on weight very quickly, maybe too quickly. How can they say that to an anorexic child? We are told that her emotions have to catch up first and that I'm stressing her by pushing weight gain.

I give them all the FBT research I can find. They don't seem interested.  At this stage I'm deranged with exhaustion. 3 weeks without H, little sleep and an average of 8 hours a day doing magic plate. I feel so alone and d hates me, screaming daily that she wishes I would die :-(

Meanwhile therapists are searching through our family life to find out why d is so unhappy that she won't eat. They don't seem to believe that she is happy at school, has no previous history of OCD, has not been abused or traumatized. Of course I am labeled a total control freak of a mother, as I monitor d 24/7 and won't take psych's advise and back off with re-feeding. H and I are feeling upset and defensive. Did we really get her upbringing so wrong that we caused her illness? 

One therapist asks if H has OCD tendencies because his shoes look shiny and his dress pristine. I'm lost for words.  Someone else asks if it could be because d is an only child and feels left out and lonely? Still lost for words!

I'm beginning to think I'm trapped in a parallel universe full of crazy health care professionals. D (or ED) laps up the contradictions in approach and advice and uses them to fight back. We withdraw her from hospital appointments and start looking for other options. Re-feeding continues, d is making progress and is calming down at meal times.

May 2011 d back at school part time with supervised lunch and snack. Teachers very supportive. None of d's friends know. She manages to take part in most activities apart from sports and loves being back at school. We find a psych and therapist who are at least sympathetic to FBT. Still, they have no experience of FBT and say d probably has a mild case of anorexia and that's why it's working?! I just keep reading and feeding. 

June 2011, D is much better and doing well but still very resistant at times. Therapist recommends d manages own lunches and immediately she loses 4lb. I'm at breaking point. So tired and angry. Why did I let therapist talk me into this when my gut feel screamed NO? D suddenly much worse again. We seem to argue almost non stop about weight gain. I feel like a terrible mother a lot of the time. I read about 'Ghandi like' patience in other parents' re-feeding stories. That's clearly not me :-(

Weight is still not back on. It's hard going, she needs so many calories to gain just a pound. Deep sigh.  Now that the immediate life threatening panic is over, it is as if I can't cope with anything at all. I feel very guilty and I think a lot about how I might have caused my d's illness and fear it's all my fault. H, family and friends shake me hard and bring me back to my senses. Don't lose focus, don't drop the ball. It's not something you did! 

We now try EFT (Emotional Freedom Technique). D likes the therapist a lot and it seems more helpful to her than CBT.

July 2011. D is doing really well. Less push back from her and helping herself to food some of the time. T wants us to stop focusing on weight gain and just maintain. I ask ATDT if that sounds right, I'm worried to stop too soon and the responses I get support this. From d's weight/height chart I can see that today, she only weighs 2 pounds more than 18months ago when she was healthy and not anorexic. That can't be right. Surely she would have gained more under normal circumstances, given she is hitting puberty and developing quickly. We keep feeding, she needs to gain another 7lb at least to be back on her right growth/weight centile.

D gets happier with every pound she gains. She needs a lot of support and supervision but is getting stronger every day. Her sense of humor has returned and though she is very moody, there are lots of bright spells in between the clouds. It's early days still but we have come such a long way already. 

I am scared to think where we would have been, had we not found the FBT research, this site and Laura's book. During the worst confrontations with the mental health team (and d), I read Laura's book again and again to find the strength and focus to stick to our convictions and keep going. I just want to say thank you for that :-)
OK, so the stuff about my book makes me blush. I put our story out there because I knew it could be the story of so many, and it has been. Our family isn't special and our story isn't unique. In fact, I hear it now every day with all the colorful diversity of each loved one and their loving, imperfect, committed family!

5 comments:

  1. Wow, THANK YOU to the person who wrote "my story so far" for sharing your harrowing journey through the dysfunctional health care system. I am thrilled that you found a way through to a much happier result, thanks to Family Based Treatment, http://www.feast-ed.org/, http://www.aroundthedinnertable.org/ and Laura's book, Eating With Your Anorexic.

    It is so great to hear about positive results. They give hope to families who are still in the thick of the struggle, and they inspire us long-time forum users to keep on posting. And, of course, a thank-you to Laura, who wrote the book and founded FEAST and ATDT!

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  2. I feel the same - I can't hardly look back and wonder where we would be if we hadn't found all the help through ATDT.

    I've been watching a neighbor boy, going through all that we went through, but not making progress because the treatment is just the same-old stuff. Without determined refeeding, I'm certain my son would still be languishing just like this boy. 18 months is such a long time, but we could have had a decade or more of problems caused from the anorexia. Instead my son is thriving.

    You are all literally an answer to our prayers!

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  3. Laura, I must respond with my heartfelt feelings about feast and atdt. When I first found the feast site and atdt I was struck with an almost instant revelation. How could so any people from all over the world and all walks of life have lved ones who varied in age and gender be telling the same stories. I felt safe and understood. I felt like a lifeline was cast to me and my family. I became a Ed research maniac, therapists and well meaning family and friends criticized my zeal and determination. But not my friends at atdt. They all understood all too well my drive. I had to fight clinicians who repeated told me I was too involved, emeshed because my dear child was in life threatening danger and I couldn't be the one to help her. I don't know where we would e today without the wisdom, experience, knowledge and everyday support I found here. I thank my lucky stars everyday for Laura Collins because without her we woul have been trapped in he vicious cycle of misinformed Ed treatment. Laura your spirit is being recreated like pay it forward everyday!

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  4. I feel the same, too. We live in Canada and waiting lists for treatment and old school ideas abound here. I am so greatful for Laura's book and FEAST/ATDT. Both empowered me to help my daughter get well. Our treatment providers had never seen as rapid a recovery as my d's.
    I had contact recently with a parent whose daughter was in the same treatment program as mine. They are still struggling and have been thru' 5 treatment programs now. I gave her the FEAST/ATDT info. I'm hopeful that they will be empowered to turn things around, too.
    Thank you, Laura Collins. You are my hero.

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  5. We're all doing this together, my friends. We are the village!!

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