Tuesday, February 24, 2009

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.


Anonymous said...

I, too have a young son suffering from anorexia. I would like to contact you via email. Please post your email address and thank you for having the courage and strength to publish your family's story.

Wendy said...

You can contact me at nourishingmyson(at)gmail(dot)com.

Anonymous said...

Like you, I have a son who also suffers from anorexia. My son is 15 yrs old. This disease began when we moved from the Bay Area to Los Angeles when I had remarried. My son and I left behind my parents, our friends, and family. My husband has been in LA for 9 yrs. At first my son was doing well, getting straight A's and he seemed to be happy. He would express to me from time to time that he wanted to leave and go back home, and from that point it just got worse. He seemed so unhappy all the while maintaining his straight A's Last year was when I noticed the weight loss. He went from 135 lbs to 102 at his lowest. He is now at 109 we have him seeing a psychiatrist that specializes with eating disorders, and he put my son on Lexapro for the OCD. In the beginning it seemed like it was alot worse. My son would take over an hour to eat the smallest meals, and he would tear his food apart into little peaces. There was a point when he was afraid to drink, because water made him feel bloated, which has started this weird fasination with water. Although he is eating a little better now, he is still stick thin. I can see every bone in his back, and chest, stick out through his shirt. I can barely stand to look at him when he is lying on the couch because his stomache sinks into the couch, it just isnt there. God forgive me, but I am afraid to hug my son for fear of feeling all his bones, when all I want to do is hold him. I feel like I have failed as a mom. Why did this have to happen to my beautiful child. He has been through so much already. Why does this have to happen to any of our children. It is heart breaking.


Wendy said...

Stacy -

I'm so sorry to hear about your son. It is heartbreaking. Do you have support and help for you? I really recommend telling your story at http://aroundthedinnertable.org. They helped me so much.

Is the medication helping with the OCD? We've never had to medicate, but I know the OCD still lingers. My son is doing a lot better, but the anorexia is always in the background just waiting for an opportunity. My son is almost 14 now. It's been a long journey.

Thanks for writing to me.


Anonymous said...

My 11 year old daughter has anorexia. We started the Maudsley method but upon the first meal we were shocked when she became so enraged she locked herself in the bathroom and begain to cut herself. That was the most terrifying moment of my life... We are 1 weeks in and that was the only cutting incident but she threatened several times after that. Telling me I was going to make her cut herself again.. The meals are getting easier and I see glimpses of my baby girl. I am encouraged and as long as i know there is food getting in her system I can address all of the pschological issues in a calm manner. Some facts that I think are relevant:
She has been on Singulair for 2 years - I took her off for fear this was causing depression
After braces and internal headgear where applied she did not eat for a week and I think this may have been the start.
She had her adenoids and tonsils removed when she was 6 - any correlation?

I will blog more later. Thank you so much for this site.. I have been devasted and need to know that i am not alone.

Wendy said...

Wow. We never had to deal with cutting - though I have heard other parents describe it with their children who are suffering from anorexia. I can't imagine has terrible that must have been.

Not sure about the adenoids/tonsils. There is a possibilities of strep // PANDAS correlation, but that link is still tenative. There are several posts on the blog about that.

We've dealt with the depression and anxiety and now OCD. Those don't seen to be going away, but are lessened with recovery.

I'm so glad you are seeing glimpses of your girl. Do you have a blog? I'm so glad that you wrote. And no, you're not alone. There are many other parents besides yourself that have been through all of this -- and I think most of us want to help each other. If you haven't yet, I really recommend going to http://aroundthedinnertable.org and posting your story. There is so much experience there. It made all the difference for me.