Staycation

Our family took a week-long staycation this past week. N had a few struggles, but we were so busy that he wasn't able to indulge them too much. He did fixate on a few OCD behaviors late in the week. I'm thinking that he was also tired from a long, packed itinerary which had weakened some of his strength against the OCD.

Scout Camp 2009

N just returned from this year's scout camp. This year the leaders planned a local trip for just the 11 or so boys in our congregation. N had a fabulous time! He fished, shot arrows and shotguns, rode a tube down a river, went rock climbing and even repelled. I love that the leaders also included religious discussions nightly.

We donated 60+ candy bars like we did last year. We sent them to make sure that N always had something to eat, which apparently was not a problem at all. His leaders said that N ate well the entire time. N did say that he struggled the first few days with feeling ultra self-conscious. He coped, I think, by relying on some OCD comforts, which is too bad, but typical.

Now, if I could only get him to take a shower! He is so dirty that he literally has dirt caked on the back of his neck.

Planetarium Pitfalls

N went to our local planetarium last night along with his peers and leaders in his scout/church group. He arrived home, holding back tears, telling me about a "giant scale." All of the boys weighed themselves and then pressured N to get onto the scale. What could he do? He stepped onto the scale and was, unfortunately, the heaviest of the bunch. I think he is also the tallest, but that detail didn't reassure him at all. He said that he was the heaviest by "like 15 pounds." When I pressed him, it turns out that one boy weighed two pounds less and another 10 pounds less. But to N the difference was monumental.

My first question was, where were the leaders? My second thought was that there was no way I could expect them to anticipate everything. They probably didn't even think twice about the boys climbing onto the scale.

The devastation to N's spirits has been huge. He stood back while the other boys loaded up one of the vans to come home. He rode home, instead, with two other leaders and no boys. Thankfully, they threw in a stop to McDonald's which helped N's spirits a bit. He came home afterwards instead of playing street hockey with the boys. Today, he begged me to not let him ride bikes with the boys who had come to our front door asking.

He seems to be eating fine, but he is very anxious and sad. I'll need to watch carefully and hug him a lot.

A Genetic Link Between Anorexia and Autism?

Interesting article: A Genetic Link Between Anorexia and Autism?
http://www.time.com/time/health/article/0,8599,1904999,00.html?xid=rss-topstories

I was actually more interested in the end of the article. They discuss Maudsley as being the only treatment with evidence-based success. The article also addresses problems that parents are encountering with traditional therapy that are similar to hurdles faced with autism 20 years ago.

It's good that the media is finally catching up with the reality of anorexia as a biologically based illness. Now, I just wish these things would sink in with the public (and all of their preconceived, but erroneous notions), and more importantly, the doctors, therapists and psychologists that treat anorexia.

Boy Scouts of America

We are members of The Church of Jesus Christ of Latter-day Saints. Currently, our church uses boy scouts as the activity arm for the boys' youth activities each week. That is why N is doing so much with scouting right now.

Just recently the Boy Scouts of America released their new health form which is required to be filled out annually by both boys and leaders participating in any activities. Anytime that they participate in "any event that exceeds 72 consecutive hours, a resident camp setting, or when the nature of the activity is strenuous and demanding, such as service projects, work weekends, or high-adventure treks," they are required to fill out "form b." What concerns me is that "form b" is an extended health form with a heavy emphasis on BMI.

Here are two quotes from the form:

"It is important to note that the height/weight chart must be strictly adhered to if the event will take the unit beyond a radius wherein emergency evacuation is more than 30 minutes by ground transportation, such as backpacking trips, high-adventure activities, and conservation projects in remote areas."

"Individuals desiring to participate in any high-adventure activity or events in which emergency evacuation would take longer than 30 minutes by ground transportation will not be permitted to do so if they exceed the weight limit as documented at the bottom of this page. Enforcing the height/weight limit is strongly encouraged for all other events, but it is not mandatory."

There is a doctor's allowance (that basically transfers liability to the doctor) that can override the BMI requirements up to a point. But the basic guidelines suggest that anyone with a BMI in the "overweight" category (BMI of 25 or higher) should not be allowed to participate in the activities listed above. Interestingly, they don't restrict anyone who falls into the "underweight" category.

I have several HUGE concerns with this. BMI is NOT a good indicator of health or fitness levels. It's not even a good indicator of fatness. In fact, the most physically fit tend to fall above the "normal" weight category because of additional muscle mass. My Brother-In-Law who regularly rides his bike 25 miles, is considered border-line "obese" (which is basically where the doctor can't even make a medical exception) based on the BMI scales.

Also, my boys tend to gain weight, grow tall, gain weight, grow tall, etc. If you weigh them right before a growth spurt, you are almost guaranteed that they will not be allowed to participate in the youth BSA activities because of these new BMI guidelines.

My biggest concern is for N. His BMI has traditionally fallen at around the 75% percentile. So that is where we've aimed for his weight gain as he has recovered from anorexia. He is currently above the 75th percentile for height and right about the 75th percentile for weight. In other words, he is right where we want him. However, if we utilize the BMI charts, he is just a few pounds away from being considered "overweight."

It would be completely devastating for him to be assessed using this new BSA "form B" and consequently restricted from participation in many of these youth activities because of being "overweight." In fact, I won't let that happen. I don't think our local leaders will let that happen either. I suspect that they will change activities from being BSA activities to simply "church activities" in order to protect N in particular. They will probably have to do that anyway because I think that 95% of the men in our congregation (potential youth leaders) will fall outside of those BMI guidelines anyway.

Here is a link to the new BSA health form.

4.0

I think this is both good and bad news. After much last minute work, N was able to get straight As (a 4.0) this quarter. It was a personal goal and I'm proud of him for working so hard to achieve his goal. He is very smart -- I've never doubted that. It shows how far he has come from a year and a half ago when his grades were all Fs. But I also don't want these grades to create continual pressure. It's okay if he doesn't get a 4.0 in the future. He definitely doesn't need anymore perfectionist tendencies.

Physical Fitness Merit Badge

Last night N attended a church youth group meeting and worked on his Physical Fitness Merit Badge. I talked about my concerns about the requirements for this merit badge in a previous post found here.

Our previous plan had been to keep N home and work on a modified worksheet (that I had already created). But, N's merit badge counselor checked in with me during the afternoon to let me know about the changes he had made to the requirements. The counselor had rewritten much of the worksheet to accommodate N. He had eliminated the body measuring, anything about weight loss and the emphasis on obesity as a risk for cardiovascular disease. [The Boy Scout program allows for modification of merit badges based on medical needs.] The counselor wanted to know if we had any specific instructions regarding diet. I just indicated that we emphasize eating a variety of foods and staying active. I didn't want him to talk about counting calories or regimented exercise. I also didn't want him to "ban" any foods. The counselor was willing to do as I asked. I was pleased with the changes he had made and I allowed N to go to the meeting.

It went really well. The only hang-up that N seemed to have afterwards was his risk for diabetes. We have a huge genetic diabetes history. He fixated on that for a while last night. I can't take that risk and his awareness of it away. But now isn't the time, either, for him to restrict or exercise with the prevention of diabetes in mind.

I'm thrilled that N was able to participate with his peers for this merit badge. I really appreciate the extra effort that his merit badge counselor gave to help accommodate N's needs.

Good Read

I loved this article in yesterday's Huffington Post by Laura Collins: She's Anorexic and You're a Bad Mother.

Reconsidering

Well, I'm not sure that N is going to end up doing his Eagle Project as I described two posts ago. We're trying to figure out if there is a way for him to demonstrate leadership without having to fully disclose the anorexia to his peers. Unless, we can spin things the right way, he probably won't do it. Right now the idea on the table is to involve the other scouts in fundraising only and label his project as "providing resources for pediatricians" or "pediatrician education" or something like that.

I have to admit that I'm disappointed. I'd like to attach some meaning -- and making a difference -- to this whole experience. But it's not my project, it's his and it's his life and his friends.

Time Travel

N is struggling a bit again. He's probably growing. The last five or six days of school, he's been late. His friends have stopped waiting for him, which is so sad because they really are part of the motivation some mornings. But he was making them late repeatedly. I can see why they would be frustrated. This morning was like a throw back to last year. He even was angry and lashing out.

School is almost over. Most of his teachers have already stopped requiring "regular" work and are instead working towards end-of-year-testing, which actually might be stressing him out. We continue to utilize the magic plate at all of his meals. I may need to magic-plate his snack in order to force some more calories. If we can survive the next two or three weeks, then we'll have the whole summer to address his growing caloric needs at home.

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.