Tuesday, April 15, 2014

Our Fight With Anorexia, Part 1: The Diagnosis

I like to have fun. I like to think about fun. And as you can tell by past blogs, I like to write about fun. But sometimes life just isn’t fun. And it hasn’t been since October 2013 when my 14 year-old daughter, Caylin, was diagnosed with anorexia.

Over the last seven months I've thought several times about documenting this experience, if for no other reason than to help me process it. When I tried, though, I just couldn't relive the agony on paper. I literally could not type ONE WORD. We've come far enough in our journey now, where I think I can write about it. My hope is that it reaches those who need it. 

The Beginning

It started out innocently enough in July with Caylin deciding to “get in shape” at our local YMCA. At 5'4, she weighed 117 pounds, not overweight by any means. My husband's dad had died a few weeks before and we were still recovering from the funeral. Exercise, with its natural endorphins, seemed like a good idea for all of us. 

Fast forward to October. What had started out as a light, twice a week workout for Caylin, evolved into a seven day, self-imposed boot camp. Caylin was down to 107. At this point, the weight itself didn't set off alarm bells, but her weird behavior did: 

  • She kept a growing list of forbidden foods: butter, sugar, bread, meat.
  • She withdrew from her friends and her twin sister.
  • Her mood was dark, her temper short. 

Call it a mother’s instinct or a direct message from God, but I Googled anorexia on October 11.th  Caylin fit every criteria. And no one believed me. My husband said I was overreacting, my mother-in-law said she didn’t look too thin, even our family doctor thought she was just going through a phase and needed a pep talk. But I knew my daughter and something was very VERY wrong.

Fast forward to November: Weight 98 and a household thrown into complete chaos. Mealtimes were a battle zone. My once sweet daughter morphed into Mr. Hyde.  She regularly cursed at us, insisted on cooking for the family without eating any of it, ate grapes by the pound, collected pictures from cooking magazines, ate with baby-sized utensils, watched cooking shows over and over, and worst of all (unbeknownst to us) limited herself to 900 calories a day. She was starving to death before our eyes, and we didn't know what to do. We begged. We bribed. We pleaded. We threatened. Nothing worked. She hated us and the weight continued to melt off.

I am a Christian. I believe in prayer. And I believe in full disclosure. The devil wants us to be ashamed, to hide our problems, to cover them up. Caylin’s life was in peril (anorexia kills twenty percent of its victims.) It was no time for secrecy or pride. We reached out to our friends, our pastor, our physician, Caylin’s teachers….anyone we could think of who could pray for her and offer us advice. 

Now before you go bashing on me for not seeking specialized medical treatment, we tried. We live in central Nebraska, five hours from the nearest in-house treatment center in Denver. We were willing to take her, but they weren’t willing to take us, because they didn’t work with our insurance company. We offered to put up a cash retainer. The answer was still no. Our only option was to apply for Blue Cross (a company they would accept) and wait until January for Obama Care to kick in when BC couldn't deny us coverage based on a preexisting condition. 

In the meantime, I did some research. Caylin's blood needed to be monitored every week, particularly potassium levels. Our local doctor, now fully on board with us, ordered and reviewed the tests every week to make sure she wasn't going into organ failure. There's only one cure for anorexia, and that's eating. We needed to get food into our child and fast.

The second week in November, God sent us the next gift in Caylin's treatment: Off the C.U.F.F. from the Duke University Medical Center. This is a priceless resource for parents. It follows the Maudsley approach to eating disorders. The program is home-based and has the highest success rate (98%) of all treatments available. If you have a child with anorexia, ordering Off the C.U.F.F. is your starting place:

Duke Eating Disorders Program
Box 3842
Duke University Medical Center
Durham, NC 27710

TEL: (919) 684-5712
FAX: (919) 681-7347

Cost: $35.

Next Installment: Forming Caylin's support team.

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