Don’t Wait to Restore the WEIGHT!

Here is some lovely and sweet news. And also quite poignant, sad and powerful. My daughter M who is now 20.5 and recovered from anorexia, called me today and shared, really for the first time ever, her feelings about ‘that’ time when she was ill. She also apologized for being mean to me and her family (poor thing) and thanked me for sticking by her. She took a semester off of school this term and is in Thailand with a friend. Just finished a three week stint at a monastery at a ‘mindfulness workstudy’ (free and sounds amazing!). Backstory…M was diagnosed with anorexia at age 16. I knew something was up when she was 14 and consulted our GP who assured me I was over reacting to her moodiness and what appeared to be OCD around food and other issues. During her 14th year there wasn’t a noticeable weight difference but a VERY noticeable mood change. Of course we had just moved and she was a teenager and her dad and I were in the process of splitting up, but still I was concerned that something else was going on. She was grouchy and fairly mean and aggressive… couldn’t even trust her for 10 minutes with her then 7 year old sister because I was worried she might lash out with words or worse. But nothing warranted a serious reaction at that time. Her 15th year she went to boarding school and within the first few months lost weight. She was at my mom’s house for Thanksgiving and my family called me with concerns. I started reaching out to the school and her advisor told me…”I hadn’t noticed the weight loss but my own daughter has anorexia” (how she hadn’t noticed was beyond me…). Still M kept assuring us she was ok and to ‘leave her alone’. At Christmas she was thin but not to the point that it seemed a health issue. I was more worried about what looked like anxiety, anger and OCD. Eating but in a somewhat bizarre fashion. Still very social with her friends and out all the time. We talked about the fact she was thin and that she needed to eat more = “yes, yes mom I know, stop nagging me..”. There was a lot of conflict in the family because M was so angry and difficult and unpleasant, and also because she wasn’t eating enough! Back to school and when we picked her up in May it was clear there was a SERIOUS problem. The weight was low, but the behaviours were seriously Eating Disorder (Ed) pronounced. She would hardly eat a thing…only spending hours at ONLY whole foods and subsisting on Lara Bars primarily. Serious talk that this was getting out of hand and if she didn’t start showing me she could feed herself she couldn’t go back to school. I watched, she couldn’t. She was horrendous to be around…angry, vicious, mean. Two nights before school was to begin she woke me in the middle of the night crying and saying she had a problem ‘Mommy I couldn’t stop and ate the whole box of ice cream…” and saying she needed help and I was right, that there was a problem. We called the school, did an intervention, she had to sign a contract in order to attend – weekly visits with the nurse, pych, nutritionist and required weight gain to be able to continue. Now that all sounds so fabulous but, at almost 17, it was really TWO YEARS too late. Poor M in her call today said she felt so bad that she was mean; I tried to explain to her that in fact WE did her a disservice. It was only when I had the knowledge and information on the need for RAPID weight restoration through her little sister’s experience at age 11 that I insisted M go back to counseling to really truly do recovery. Even while in ‘treatment’ Maggie did gain weight it was NOT ENOUGH to keep Ed at bay. So even while her Ed was diminishing her depression and anxiety didn’t leave. Through the counseling she received THIS year and through survival and getting enough nutrition and calories, antidepressants which she is now weaned off of (and also some heavy partying… some negative effects but one positive is that she got weight on) she is FINALLY at a place of health and reflection. The fact is that she was ILL and NONE of us got her the treatment she needed. She was a functioning anorexic. For the past 5 years she hasn’t really been well. And sadly now that she has had some insight through a meditation retreat experience she is able to look back. So it is a happy story but also one that needs to mobilize us. First, Maggie should have had specialised Ed treatment at age 15 as soon as she lost that first chunk of weight. I should have taken her out of school which was my gut feeling and get her into more intensive treatment wherever we could even if it meant quitting my job and moving. We failed her. Secondly, her ED treatment through a psychiatrist, nurse and nutritionist should have included RAPID WEIGHT RESTORATION. It didn’t. Things just poked along and we were told they needed to address ‘underlying issues’. And Maggie herself didn’t want us to be involved! Thirdly, we, her parents should have known about the above and how we could play a role (this was 2010 so the data on FBT and RWR had just come out). We didn’t. As a result this child suffered unnecessarily. I told her tonight that we failed her and she had nothing to be sorry for. And that also the blessing in Emma’s Ed was that we could use methods that worked and she could also benefit, thereby avoiding potentially years of suffering. The other thing to note is that I knew something was up with M as early as 2 years before the weight loss! Now as a parent of a teen we can’t react to everything, but with a family history of Ed we need to be ‘believed’ when we talk to providers, and we need trust our instincts. So clearly we MUST argue for full information on EARLY intervention, RAPID WEIGHT RESTORATION AT ALL COSTS, Family Based Treatment/Involvement. I wish that we could have helped M to avoid all this. M just thought she was ‘crazy’ and that her anxiety was her burden. I know that for E, who got the early dx and the RWR things will be very different. She may struggle again, but she will never be left underweight and underserved. And that this is why the work we are doing to get funding/FREED is so critical. We parents deserve this and so do our kids. Goodnight all and much love. x

There is hope! Us and our refeeding #eatingdisorder #anorexia

My girl was just 11 when we realised there was a problem.  I’m a single mom, but my family and X are very involved.  This is just a glimpse of what it is like to do Family Based Treatment, Maudsley Method. More about that in subsequent posts.
September 14 2013
At any rate… let me embrace the sunshine of my daughter actually eating. Yesterday she also ate and lots of hi cal foods. Ok, mostly what one would consider junk foods but also meals. A bag of Doritos. Two cupcakes. lots of Skittles. Cereal. A cheese avocado mayonnaise mustard tomato sandwich. Two scoops of ice cream with Bounty chocolate bar crushed into them. (Amazing that we have all these things in Dar now! Cost a small fortune but works it because she eats!). She begged for salad for dinner because she had eaten so much junk food. Broccoli, tomato, lettuce, zucchini, almonds and dressing. Olive oil and vinegar. She begged to stop but i made her eat everything but the iceberg lettuce(which I didn’t want her to eat anyway, full of nothing…). A Ceres Drink. Water. Piece of baguette. Then bedtime with no fuss….
On the good days she doesn’t fight so much. Sings songs for me, calls me mommy, asks me to cuddle with her and sing her songs, tells me how her day was.
Some days are good and bad together… breakfast might be bad but she perks up later. All day good but fighting at dinner. Its hard to tell. When she is rested and fortified she’s much happier. When she is happier she eats. So i focus on getting the food in now and making sure she is rested in order to make sure next snack/meal is less stressful. And that she can be a kid and go to school and do her singing and her blogs and her videos and chat with her sisters and brother and think about going skiing, or hiking or swimming etc…. Eish… damn hard work. Damn ED. Damn disease.
I am vocal.. I say to the ED.. “i let you beat me in the past, maybe even yesterday or this morning, but I’m not letting you beat me today/this time.”. ED looks at me glumly or angrily or defiantly… I ignore and just sit and wait. Ignoring seems to work. Distracting sometimes works. Waiting sometimes works. But sometimes I just say, enough. No computer, no phone, no makeup no school. Either eat or drink this nasty meal replacement. ICk. Or we go to clinic where the nurses will make you eat it.
ED is tricky. ED is devious. ED is very clever. ED is a master negotiator and a master debater.
I am exhausted. This is the third day and third week of being up at 530 am with her and the very first day i didn’t need to spend over an hour trying to get her to eat breakfast. And snack. And lunch. And snack. And dinner. And snack. Six times a day.  Is it a turning point? I think she’s settling in to this FBT routine but she has ups and downs. on the downs she screams, calls me names, threatens me, throws things, tells me all sorts of horrible things only designed to make me angry/upset/hurt (eating disorder talking LOUDLY)… tells me to go fuck myself (whattttt?? Where is my sweet 11 year old?).  Tells me i ruined her childhood.Tells me she wants to live with dad. Tells me she hates me and I’m the worst mother ever. Tells me she wants to run away. Throws the food down, hides it under her bed, spits it out. I argued with my boyfriend today over something silly – yet he’s been by my side without question. Has taken abuse from Emma as well and waited patiently. And the other day when he passed by for a few minutes I came into the living room where they were playing games on the iphone, just being silly.  I saw my real girl for just a moment. Since he’s been cautious and respectful he waited for her to approach. She can let her guard down and be a kid because he doesn’t expect things from her.  He invited me for coffee yesterday when Emma was at school but I just couldn’t – it felt like too much pressure on me to attend to anyone else’s needs right now. And it was time to cook a meal (high cal low volume) for dinner.
Its 1 hour until lunchtime.  And we start again.
Today however. This morning however, my girl let her sunshine peek out…and I was grateful. I almost cried. There have been plenty of tears but mostly hers. I’m too scared to cry.
So now I need to energize myself before lunch. :).  Strength…
Online today i saw that the Eating Disorder Coalition in Washington DC is meeting members of congress today on the Hill.I didn’t know about them, heard about it through Mothers Against Eating Disorders… MAED a great fb resource and really helping me…good tips for helping Emma and also for supporting me and the family. I will spread the word and find out more about them and how we can help.
More later…

What to say when someone says “I’d like a little of your eating disorder”..

This is in response to a great blog post written by Rebekah.. read her blog here…

Thanks for this. I’m a lucky survivor and was astonished that two of my girls, the youngest only 11, were hit. It was one thing to deal with this myself as a teen and in my 20s+ but another thing to see my little girl become a hard core AN. We caught it early, are doing family based treatment – its the hardest thing I’ve ever done – and she’s coming along. i’m hopeful she will recover fully with minimal scars. But I also know she will carry this with her for years and I’ll be there making sure she EATS and cares for herself in times of stress. I’ve also gotten that response and comment from friends and strangers.. i could tell them that they DON’T want to know that my sweet girl can be a monster when faced with a meal, which is SIX TIMES A DAY; that her ED will regularly tell me to go f*ck myself; that I often have to peel her off the floor crying – sometimes both of us; that they don’t want to clean up thrown food or cups or glasses or plates; that feeding someone with anorexia essentially takes EVERY MOMENT of your day and forget about work, social life, relaxation at least until you get out of the phase of refeeding; They don’t want to do that or watch that for sure. Or the fear that your little girl, your beautiful, charming, intelligent, charming 11 year old could be a statistic…that she and others like her have a 1 in 10 chance of DYING because of this eating disorder.

But what I do say now is this. I pause. And I say ” In fact Eating Disorders are a BIOLOGICALLY BASED Brain disorder…they are a form of mental illness. They are serious and have a high mortality rate.” Usually the person looks stunned. I will say more if they seem interested. I like to use the phrase ‘mental illness’ even though I know it is loaded. But NO ONE WANTS A MENTAL ILLNESS. I want that to be perfectly clear. and NO ONE WANTS AN EATING DISORDER.

The very amazing thing now, unlike when I was hit 20 years ago, is that sufferers and survivors and their families now have resources and research to support treatment. That just was not there 20 years ago. I remember really thinking I was crazy, and only finding Hilde Bruch – which sent me into alot of therapy and blamed (unfairly) my family and (incompletely) society. Now we know that FBT works, that early treatment works, that FAMILIES have to be involved and part of the treatment, and that we have to make our girls EAT to send ED off to where they belong. Deep down a dark hole, hopefully only a reminder of the past and a tiny alarm to help manage the future.

I think it is fabulous that we can start educating people. Schools need it. Parents need it. Coaches need it. Classmates need it. Media needs it. In the US the FREED Act is a great start to FINALLY get a federally funded effort to address education, advocacy, research, treatment.

Thanks again for your great post… xxxx

Cruel lover

Cruel lover

If I look away for a moment …
He comes back in sleek and sideways
Calculating and visceral
Snaking through the gap
He is the creature of control
Taking her unexpected
Eyes wild
Passions deep
He wants her alive
To break her from the stem
Her sweetness and passions ripe
The flesh of a pear, a peach
He wants it ravished inside out
A tender lover
A lethal drama
A feral beast
I bear down and will catch it out
a rotten sneak
Let her go