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.

Visiting Grandma

We spent this afternoon with N's Great Grandma & Grandpa. They've been aware of N's illness and have prayed with the rest of us for his recovery. At the end of our visit, she asked how N was doing. She then told me about a relative's friend that is suffering from anorexia (and later we found out bulimia).

I've had several talks with Grandma about N's recovery, the research that we've found, and the different ways of looking at this illness. But I was surprised to hear her ask about this 18 year-old girl, "Why would she do this?" I was surprised because I thought we had blasted through those old stereotypes long ago. Yet all of a sudden, I realized that all of our conversations hadn't changed those old perceptions. So, once again, I (along with my son and husband) corrected her and said, "it's not about that, it's a brain disorder." I could hear in her tone a belief that this daughter was "doing this" to her parents.

I must confess that I wondered for the first time if all the education that we're trying to spread is even making any difference.

Weigh-In

I had N weigh himself last night. He is down two pounds to 116. I've been more relaxed about his calorie intake (which in some ways is a good thing) and N is busy with friends and school and is not really paying as much attention either. I've got to stay on top of things. Christmas is a good week to get back those pounds, hopefully without much effort.

Measure-In

I measured N the other day. He has grown so much since February. He is now 5' 1 3/4" -- just 1/4" shorter than me. :o)

Fears of the Future

Lately I've been thinking a lot about how having anorexia will affect N's future. I hear stories of many who have beat the anorexia and have moved on without looking back. Still, I watch him now, doing so well, yet still fighting the triggers. Will that happen his whole life or just through his teen years?

I also hear of set backs that happen as children begin college or move out. How will he do when he starts school? Because T is a college professor, we receive a tuition benefit. Hopefully that keeps N close to home where we can keep an eye on him. We've always been big advocates of the importance of living at college, but will that be the best for him? Will he be better off living at home?

N has a goal to serve for two years as a volunteer missionary for The Church of Jesus Christ of Latter-Day Saints. Typically, missionaries live in less-than-idea conditions. Often they are sent to foreign countries and these 19 - 21 year-old boys work hard! Not only do they teach people about Jesus Christ, but they also serve the people wherever they go. My already skinny husband lost a lot of weight when he served a mission for two years in South America. How will that affect N? Will he even be able to serve? Or will he be kept in the United States because of the anorexia.

What about military service? N recently discussed the possibilities of joining a ROTC program during college. Would they even take him? What if he went to war? War time conditions would almost absolutely result in weight-loss which we already know is a trigger. I worry that he wouldn't survive a relapse of anorexia in those conditions.

What about the lingering OCD issues? Will they stop him from being all that he can be? And mostly, what about a family? Will anorexia triggers always have to be a concern for his wife?

So many worries! Do any of you know (or can predict somewhat) the answers to these questions?

Happy Thanksgiving!

I just wanted to mention how thankful I am for the progress that N has made over the past year. I'm thankful for all of you and your support throughout the journey. I'm thankful for Dr. R. and the fact that he is the really the perfect blend of family and patient support (since we haven't been able to find a Maudsley therapist). I'm also thankful for Laura Collins, her advocacy and support as well as the forum she created (http://aroundthedinnertable.org) that I credit with saving us. I'm also thankful that Heavenly Father has blessed us with a full measure of support and his spirit during this time -- and also his son, Jesus Christ who has already carried this burden.

Weigh-In

I forgot to mention that a trip to the doctor's office a week ago Sunday, put N's weight at 118 lbs.