My son has DMD and is now wheelchair bound for about two years. We are struggling with his weight. He eats small servings, more fruits and vegetables, and drinks water. However, he is not loosing any weight due to his inability to do physical activities to burn calories. I was told I should see a nutritionist. I told the doctor that the previous two visits did not help me. The nutritionist just tell me to give him more vegetables and fruits with less amount of food. I don't know what else to do. How do you guys deal with weight that cannot be lost? Any suggestions would help.
Mother of Brian Thao (a 11 year old boy with DMD)
A lot of families have had a lot of success with their boys losing weight using the glycemic index guidelines. I have heard about several wheelchair bound boys losing weight. Here is some basic information:
If you are on facebook there are several Duchenne groups for various aspects of our boys lives. There is one focusing on Diet and Exercise. https://www.facebook.com/groups/211682848891366/
If your son is on prednisone, you may want to consider switching to deflazacort.
Also, if it is any consolation, my son went through a weight-gain phase at the same age, and it tapered off by age 13.
If your son is on prednisone or deflazacort, how long have has he been taking it? Kids that have been on it for many years can develop insulin resistance. You may want the doctor check his blood sugar levels. My son was very heavy for awhile. We had his blood sugar checked and he was put on metfomin. He has lost a lot of the weight now. We did also see a nutritionist as well.
My son is not on any steroid or medication. We don't want him to gain weight when he can't loose any. Susan Rathfelder, thanks for the suggestions. I will try it to see if it will help him loose some weight. I hope that his weight will taper off.