Tuesday, September 23, 2014

Our Fight With Anorexia, Part 3: TIPS

So your child has anorexia. You’ve decided on a treatment strategy: Admission to a medical facility or Home-based therapy (Maudsley). You have your support team assembled. Now what?

Having fought in the trenches with our daughter, Caylin, since October of 2013, we’ve learned a thing or two. Every battle with anorexia is unique, but some fundamental truths will help you cope.

  1. Anorexics don’t look like regular “sick people.” On the surface, they seem like normal functioning human beings, but the truth is, they’re as critically ill as any person lying in a hospital bed. Try to remember this when your patience and understanding snaps (and it will…many times). Remove yourself before you lose your temper, and if you do lose it, forgive yourself and start over. Anorexia is a long-term disease. There’s no clear-cut beginning, middle, and end.  Just when you’re starting to lose hope, progress is made.  And just when you think you’ve turned a corner, your child refuses to eat dinner, calls you every name in the book, and cries herself to sleep.   Know that this is normal no matter what treatment approach you’re following.

  1. Anorexics need to stay busy. Too much downtime makes that nasty little voice inside their heads start telling them they’re fat. This is simpler during the school year, because school provides the busyness and structure. Summer is tougher. Before school was even out, we had Caylin scheduled up to her eyeballs with camps, fun runs, two jobs she loves, and vacation trips.  And of course, we continued the regular appointments with the support team.

  1. Anorexics do better with advance warning of changes in their routine. For example, when we leave for vacation, we tell Caylin when and where she'll be able to exercise so she doesn’t work herself up into a panic. Or, when her class went to D.C. for a week, I researched the restaurant itinerary and planned it out with her ahead of time: “The third night is a pizza place, but you can order the whole wheat veggie lasagna instead.” These seemingly unimportant details to you and me are lurking MONSTERS to an anorexic. A normal person would show up at a pizza place and think, “Hmm, I’m watching my waistline; let’s see what else is on the menu.” An unprepared anorexic might actually have a panic attack and refuse to eat anything at all.

  1. Anorexics, like terrorists, must not be negotiated with: Three sit down meals a day, plus snacks. Period. Do not wimp out on this! Well she’s been doing so much better. Maybe it’s ok if she skips breakfast just this once. You know the old expression “Give an inch, take a mile.” Your anorexic will take 10 miles. Stick to your routine like her life depends on it, because it does.

  1. Although it seems like your whole existence is centered around food, try not to act that way. Don’t talk about food at meals, don’t discuss restaurant reviews, don’t complain about your own diet, don’t chirp on about the latest cooking show, don’t rave about the delicious cake you ate at the reception last night. Keep off the subject of food!  Talk politics, world affairs, the latest fashion trends…..you might actually have a pretty articulate kid when you pull through this ordeal!

  1. The name of the game is POKER FACE. When your anorexic weighs in at the doctor’s office (remember, NO SCALES IN THE HOUSE!) don’t react one way or another. If you look unhappy about her weight, she’ll secretly rejoice that she’s outsmarted you and will triple her efforts. If you look happy about her weight, she’ll resolve to starve that smile right off your face. Though she’ll never admit it, your daughter is actually happy not knowing her weight. (And nix the school weigh-ins too. Call the school nurse ahead of time.)

  1. Anyone who works with your child is a member of your army. Caylin attended a cross country camp at a nearby university this summer. I called the director of the camp and explained her situation. He assured me that the camp covered appropriate nutrition for runners, and that he would personally talk to Caylin about it. He did, and she LISTENED!!!  She loves running more than anything, and to hear this from a coach she liked and respected brought her around the corner!

  1. Anorexics bear tremendous guilt. Tell your child over and over: "IT’S NOT YOUR FAULT!" When Caylin returned from cross country camp, she was like a new girl. The coach (God bless him) told her that the anorexia wasn’t her fault, that it happens to a lot of people, a lot of athletes. We’d been dealing with her anorexia for almost a year, and somehow we missed this message. Of course it wasn’t her fault! We knew that! But we didn’t tell HER!! Anorexics know what their disease is doing to their families. Remove that guilt and shame from their fragile shoulders. 

Most importantly, believe in your heart your child will reach a happy end to this terrible journey. I know your pain, your frustration, your horror, your exhaustion. I know it. I’ve lived it. Thankfully, I think we’ve come through the worst of the storm. Caylin is a happy freshman in high school now, a member of the varsity cross country team, and is connecting with her friends again. She still has rigid food demands (no sugar, low fat, non fried), but she eats everything else willingly and actually enjoys it. Despite the sunny outlook, we haven’t taken our foot off the gas with her treatment. She still sees her counselor once a week, and the doctor once a month. I look forward to a day when these visits are no longer necessary, but I won't risk losing her again. 

I thank Jesus every day for the recovery of Caylin, and I pray every week for those families and victims still in the trenches. Be strong! You can and WILL get through this! 

Tuesday, May 13, 2014

Our Fight With Anorexia, Part 2: The Support Team

I wouldn’t wish Anorexia Nervosa on my worst enemy. It can never be cured, only managed. If not managed, it kills. Simple as that. Get food into your child or else…

Anorexia's self-imposed starvation has a terrible affect on the mental state of its victims. Anorexics are paranoid (everyone is trying to make them fat), delusional (imagining fat on their bodies where there isn’t any), combative (“you can’t make me eat”), and obsessive compulsive (ritualized eating involving a minute number of “acceptable” foods).

Our 14 year-old daughter, Caylin, is an anorexic. Thankfully, we recognized it early on. As detailed in part one of this series, we had difficulty obtaining specialized medical care. Through prayer, we found the Maudsley approach, which is home-based and has the highest success rate (98%) of all eating disorder treatment programs. The Maudsley formula is simple enough: refeed your child at home. Carrying this out isn’t simple at all, however!  It requires a support team and a willingness on the part of the parents to go through Hell and back over and over and over.

If you decide to follow Maudsley, you will have to form your own support network, very much like in-house treatment programs. Our team consists of the following:

  1. Medical doctor. You must have a baseline physical examination and blood work before you start. We caught Caylin's anorexia early on before any damage to her organs could set in. (If your child’s organs are compromised, hospitalization is NOT a choice!) Caylin has blood drawn every week, which is reviewed by our doctor. This is a pain in the neck, but it's critical if you’re going to treat at home.  Cardiac arrest is a very real possibility for anorexics. Weekly blood work keeps you on top of this threat. In addition, your doctor may have to prescribe medication to help with the anxiety that comes with anorexia. This will be a collaborative decision between you, your counselor, and your doctor.

  1. Counselor. Choose this person carefully.  She will be in the trenches with you throughout this ordeal. You and your child must be able to connect with this person! If not, keep looking. We found a Christian counselor who did not have any experience treating eating disorders specifically. She did, however, have extensive experience with OCD’s.  She is compassionate, caring, and has thrown herself into our daughter’s treatment. Caylin sees her in-office twice a week. I don’t know what we’d do without her. She allows Caylin to call or text her whenever she’s having trouble coping, even if it’s evenings or weekends. Our counselor prays for us as well, which I view as a critical part of conquering this disease. Caylin has made great progress under her care.

  1. Nutritionist. We found a nutritionist at our local hospital who has experience treating eating disorders. We take Caylin to her weekly to retrain her mindset regarding healthy foods, and to help establish caloric goals.  I’ll be honest, Caylin does not like this part of our support network. Eye rolls are common, but we’re staying firm. She has to hear the right information on a regular basis from someone other than us.

  1. Pastor, friends, family. Anorexia has no religious boundaries. We just happen to be Christians and prayer is central to our functioning. However, if you are not religious, at least enlist the support of friends, family, and your child’s school.  Silence and embarrassment have no place in the treatment of anorexia.  This disease is going to take a toll on every member of your family. Don’t go it alone! Worried about gossips? Don’t be.  When you’re open about the disorder, it takes the wind right out of their sails.

  1. Books and Internet. I’m a researcher. There’s plenty of internet sites to help you navigate this horrible disease. Maudsleyparents.org is an excellent one. I also recommend Duke University’s book Off the C.U.F.F. to help you with the difficult task of refeeding your child (ordering information found in part one of this blog). Another book I highly recommend is Harriet Brown’s Brave Girl Eating. I read this book very early on, and it’s been a comfort and guide to me ever since.

Even with all these supports in place, anorexia is a long, tough road; a marathon, not a sprint. We’re still running the race with Caylin, but it's a race we have every intention of winning. 

Next installment: Miscellaneous tips to help you and your child conquer anorexia.

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.

Monday, April 14, 2014

Mr. Selfridge Episode 3....A Whole Lot of Chocolate Going On

I didn’t know when I tuned into Episode 3 of Mr. Selfridge that I was going to get a lesson in all things Belgian.

For those geographically challenged, Belgium is located right across the English channel, smack next door to Germany. A French, Dutch, and slightly German speaking country, Belgium has a figurehead monarch, namely King Philippe.

 “King who?” you say.  I know, I know.  If it’s not Kate and Will, who cares, right? But monarchies still abound in the world, and Belgium has a crowned head who happens to look a lot like the Dos Equis guy:

King Phillipe
Dos Equis Guy

And let’s not forget the most important part of Belgium: waffles and chocolate, mostly chocolate. What a hoot it was to watch Miss Mardle inhaling chocolate all night, then getting hit on by the chocolatier. They say good things come to those who wait, and Josie, my dear, you've been waiting long enough. If the Belgian Willy Wonka wants you, I say go for it!

Elsewhere in Mr. Selfridge, the mood continues to darken as employee after employee signs up for military service from which they’re unlikely to return. Frank Edwards knows the score. Unfortunately, he’s the press, and the press is being censored.

Alas, not much else going on this episode:
  • Henri’s up to some subterfuge involving money.
  • Harry’s still sucking up to Rose
  • Lord Loxley is still being a jerk, but don’t worry…Lady Mae’s got her ancient maid spying on him now.
  • Kitty still has the hots for George.
  • Victor almost enlists, then decides not to at the dying wish of his uncle. (This is a huge decision for him, as cowardice in this time period is viewed worse than death.)

Kind of slow moving this week, but still a good way to spend Sunday night. Now if you'll excuse me, I'm off to find some chocolate. Can't imagine WHY I'm craving it....