Eagle Scout Project

N is currently considering doing an Eagle Scout project that would involve eating disorder advocacy. He is thinking of putting together informational packets about anorexia and distributing them to local pediatricians and middle-school counselors. He is thinking of including a page telling his story, a list of symptoms and treatment options, a pamphlet with local treatment resources, and maybe the Kartini Clinic DVD. What else could he include?

Previously, as N had thumbed through lists and lists and lists of possible Eagle Scout projects, he just ho-hummed. I could tell that he felt like these ideas wouldn't make much of a difference in the world. After several days of throwing ideas back and forth, he started exploring the idea about helping others with eating disorders. As soon as we starting talking about all the possibilities in this area, he really got excited.

You may remember that N's pediatrician was really unknowledgeable about anorexia. The pediatrician didn't recognize his symptoms as an eating disorder. Once we identified the problem as anorexia and asked for a referral, his pediatrician referred us to a psychologist that deals with children with behavior-disorders (which is obviously an inappropriate referral). As I look back now, I'm also so surprised that the pediatrician didn't immediately order tests and set up a weekly-check-up schedule. At one point when we really needed to have a quick medical work-up, we lucked out and saw a different on-call pediatrician who had done a rotation in an eating disorder clinic. He knew what tests to do and how to read the results. I know that was a huge blessing at the time. Until we found a team at our local children's hospital, N really didn't have the medical attention that he should have had.

Anyway, N feels like it could really make a difference if he provided additional (especially local) information about anorexia to pediatricians like his own. I'd like to help him find a way to do this so that he can maintain some bit of privacy and yet still make a difference. Any suggestions?

Still Good

N is still doing really well. I am still monitoring his calorie intake pretty carefully. In fact, I'm mostly doing a magic plate with him for breakfast and dinner. Though I let him fill his own plate, I'll add to it if I feel like it is deficient. He doesn't resist at all. This is where it is easy to relax and let down my guard. But I just keep relearning that I can't do that.

Doing Well

N had a great day today. He's busy doing his homework and practicing his guitar -- all in anticipation of getting to play some video games. It's the end of the school term. His grades look like they'll all be As. We've really come a long way!

I don't think I'll have to worry about class order (because of perpetual lateness) or unmanageable stress for next year. He has done well, for the most part, with the stressful moments of school this year and he's not really been late at all. Class change was a small challenge, but he has settled in now.

I will have to meet with his teacher in preparation for his health class next year. He will likely need to be excused for the curriculum portion on eating disorders -- not because he can't handle the discussion -- but because it may put him in the precarious position of feeling like he needs to correct the teacher (who may not have current information about anorexia). We also don't want to "out" him by revealing that he is an expert about eating disorders. It's not that we are embarrassed about his being sick -- though it has been an unexpected trial -- but too many people still don't understand the medical origins of anorexia and judge him and our family unfairly. We've been more open about the disease generally, but I don't think a Junior High Health class is the place for full disclosure.

I hope I can educate his teacher about anorexia. I also hope his teacher will be willing to proceed cautiously, especially when addressing any topics about weight and diet. I really wish our kids would be taught more about eating well and being active, instead of the need to be a certain weight.

Improvement

After raising N's calorie intake for several days, he's doing great. He was just a little over-concerned about what he wore this morning. Other than that, I haven't really noticed any break-through symptoms.

Everyday-adequate-calorie-intake seems to be just as important as his weight. His symptoms rapidly disappear once he is getting what he really needs.

Military and Missions

In this post (http://nourishingmyson.blogspot.com/2008/12/fears-of-future.html), I described some of my concerns for N's future. I've done a little research since then. Apparently, the military would reject N because of his eating disorder. Eating disorders are included in the "unwaiverable medical conditions," but they are only documented if they occur after the applicant is 12 years old. I wondered about civilian positions, but wasn't able to find any additional information. This makes total sense to me. In tough conditions, especially those with high calorie expense and low calorie intake, someone potentially relapsing into anorexia could compromise a mission.

As far as him serving a mission for The Church of Jesus Christ of Latter-Day Saints, they do ask about eating disorders on the application. His Bishop (like a Pastor) would attach a letter explaining the terms and severity of the anorexia. Then depending upon his current health, he would be assigned. I hope that he would be asked to serve in a country with good food. :o) I really think he could contribute positively on a mission as long as he didn't have to walk everywhere and struggle to find good food.

He's Growing Like A Weed!

I've noticed another resurgence of anorexia symptoms in N recently. This time it's been a little worst than in the past. And that usually means one (or both) of two things: 1) He isn't getting enough calories or 2) He's lost weight. So I weighed him - 119 lbs, which is down about 1/2 pound. Then I measured him. I was so startled by the results that I measured him again. A conservative measurement shows that he has grown a full inch in the past month. With that much growth, a stagnant weight is just like loosing weight. That explains the up and down struggles that he has been having over the past month or two.

So, we've gone back to a similar routine like when he was really sick. I dish up his plates. He eats it all. I track his calories. It's just been two or three days since I measured him and I can already see a decrease of those pesky symptoms. I just have to be so attentive right now -- especially since he is growing so rapidly.

And just to clarify, these reoccurring anorexic symptoms are so minuscule compared to how sick he was a year ago (at most a "1" on a scale from 1 to 10, with 10 being his worst symptoms ever). I might notice that he is acting a little more self-conscious or emotional. He starts to be a little picky about what he eats. He also might struggle to get going in the morning. Mostly these resurgences don't interfere with his (or our) normal lives. I'm just so highly attuned to these warning signs that I try to address the problem right away.

I continue to be amazed about how consistently important it is for him to keep his weight up. A drop in weight always correlates with an increase in symptoms. At a reasonable weight, he is just like a "normal" 12 year old.

Now he is officially taller than his mom.

Nourishing My Son

Just four months after my son’s 11th birthday, he was diagnosed with anorexia. You might be surprised that my son has anorexia, both because he is a boy and because he was so young. In reality, 1 in 10 anorexia sufferers are boys and it isn’t uncommon for kids to be diagnosed as young as 9 years old.

My son wasn’t the rebellious teenager with anorexia that I had always pictured as described in my high-school health class. In contrast, my starving son was well-adjusted, kind-hearted, smart, obedient, and good. Yet, he was restricting and counting his calories. He exercised excessively and started to drop pounds quickly. He became so incapacitated about eating that he would often curl up on the floor and cry for hours. He was starving, but just couldn’t eat.

Because of his diagnosis of anorexia, we sought out the best medical and psychological care. But, he continued to decline. For four months, despite therapy and medical care, he continued to lose weight. We were desperate as he reached his low weight of 76 lbs. – a total loss of 30 pounds. He had missed tons of school because he literally couldn’t get out the door each morning. His grades had gone from As to Fs. Our whole family was really suffering.

At this low point, we held an extended family fast and I felt that I needed to become an expert on anorexia in order to help my son. I sought after and read everything that I could find about anorexia. Within a week, I discovered a wonderful parent-support-forum (http://aroundthedinnertable.org). These parents, all with children suffering from anorexia, steered me to research that suggests that anorexia is a brain disease and not psychological in origin. Consequently, this research advocated a different approach at treating anorexia. I shared this research my son’s doctor and he indicated that it was valid research. So we changed our course.

The traditional approach for treating anorexia is to try and talk the sufferer into eating and simultaneously deal with assumed underlying psychological issues. This approach has controversial success rates, a high incidence of relapse, tends to separate the children from their parents, and usually involves years of treatment and thousands of dollars. We had started with this treatment approach. But after months of continued weight loss, our son wasn’t getting better, and was actually getting worse.

Our changed approach (based on Maudsley treatment methods), encouraged family involvement and emphasized food as medicine. I learned that treating anorexia is like treating cancer. If you had a child with cancer, you wouldn’t try to talk that child into having chemo. Instead, you would acknowledge to your child that chemo is horrible, but is ultimately what was necessary to save your child’s life. With anorexia, food is the chemo. And as horrible as food seemed to my malnourished son, it is ultimately what would save his life.

Just days after my son reached his low weight of 76 pounds, I presented him with a plate full of food. I told him that the world had stopped. We wouldn’t be going anywhere nor doing anything until he ate – no school, no scouts, no church, no meetings, nothing. He argued, sobbed and yelled. After several hours, he realized that I was serious and he took a bite. It was a long night of taking one bite at a time, but he ultimately finished his food. This began an ongoing routine. Every meal was hard for him. We made jokes that food was “scary,” but eating literally was scary to him. I became an expert in making calorically dense foods. He started gaining weight. His improvement came one pound at a time. But with every pound, I could see my son emerging. It took seven months for him to regain those 30 lbs. It has been 18 months since my son got sick. We consider him to be in remission now.

In writing this post I have two desires. My first desire is to spread the word that there is an alternative in the treatment of anorexia which works. The second is to help break down many of the negative stereotypes associated with anorexia. 1 out of every 10 girls and 1 out of every 100 boys will suffer from anorexia. These are huge statistics and you might find yourself confronting anorexia at some point in your life.

Loose Pants

I can already tell a difference in N's responses. After two days of supervised eating, his calories are up and his spirits are up. But, his pants are looking loose. I've also not been very regular about weighing him. He seems to be growing so quickly now, yet his weight is stagnant. I'm sure we need to push calories better and keep up with his growth spurts. The danger of falling behind is absolutely a motivator to me.

Update

N started guitar lessons today. Hopefully they serve as an outlet for both achievement and relaxation.

N had a really good two weeks. I relaxed and let him choose his foods again for those weeks. But he's been off the past few days again. A friend told him that his arms were chubby. He struggled to pick a shirt the other day. He hasn't been eating very well. He hid his toast one morning (I think he didn't like it -- not necessarily restricting, but deceptive none the less). He's also been more moody. All are clues that I need to be more diligent. So, I've reinstituted the "magic plate" for breakfast and dinner. I'm checking more carefully that he's actually eating lunch. After a couple of days of increased attention on my part, I can already tell that he is doing better. I've got to watch carefully for those dips. They don't happen so often anymore which is wonderful. But this one went on for too long before I picked up on the clues. I can't let that happen.

Hmmmmm

N is still struggling with the term change. I've had to take back control over his breakfasts. He was either restricting or just not taking care of himself. I'm certain that he is still growing like crazy, but his weight has been static for two months now. Either way, I'm seeing his self-consciousness (and temper) increase.

I'm also seeing increased concern with exercise or wanting to have a sport. He's decided that he wants to run track. Boy -- that's a potential problem. Do I let him try and watch him carefully? The boys at this age are so defined by what sport they participate in. I get that N feels like a "nerd" because he doesn't do sports. Is it possible for a boy who has anorexia to do a sport at a reasonable level?

We've got a winter campout coming up. N is resisting anything "puffy." We've told him that if he won't wear the appropriate equipment, including coat, snowpants and boots, that he can't go. I find myself just wanting to keep him home and protect him from the weather and the other boys. Boys at this age are so mean to each other.

Check Up

N and T met with Dr. R. last night. It was a positive visit and in fact, they didn't even stay for the whole hour because "they ran out of things to talk about." Our next appointment isn't for another four months. The topic of discussion was long term recovery.

N just started a new term at school. He has been significantly more self-conscious (even to the point of calling himself "fat") because of new kids, expectations and teachers. I think some of the anorexic feelings have increased because of the change, but I also see N dealing with it better than he has previously. Hopefully, each time he experiences change, he'll get even better at dealing with it - until it's just not an issue anymore. Dr. R told him to address the self-consciousness and any OCD stuff before it ever became about eating.

N also made an interesting confession. He said that he eats in order to avoid his homework. Wow. I'm pleased that N is honest about his motives. So they also talked about avoidance (everyone does it) and to stop and really find out why he doesn't want to do his homework. At some level I don't know how much these things really have to do with the anorexia -- but it was good for him to discuss them.

Bulimia

N is now 12 1/2 years old. When he first got anorexia, he was barely 11. At the beginning of his treatment, his therapist stated that it was good that N didn't also have bulimia -- that the characteristics N was demonstrating at the time were evidence that we would have a long, long road ahead if N's illness led him toward purging. Because of this concern, we've watched him carefully for signs of purging, kept the research books hidden (with mixed success), and haven't really talked in depth about bulimia. I assumed that N didn't really know what bulimia was and that to talk about it was to also put ideas in his head.

I briefly talked to N after our visit with his Great Grandmother (last post) and wondered whether it made him uncomfortable. You can imagine my surprise, though, when he shifted subjects and started talking about the girl with bulimia, confessing that he had "thought about it" (throwing up), but couldn't stand the idea of making his throat burn. I looked at my husband, who was also processing the comment in shock.

I'm not sure what to do with this information now. I think it was naive of me to think that by not talking about bulimia it could prevent N from purging. It leaves me wondering if we should have (or should be) engaging that topic more directly. Thankfully, though, I really believe him when he said that he has never done it.