What are the growth and developmental characteristics of children with DMD?

  Understanding and knowing the growth and developmental characteristics of children with DMD can help to properly treat and grasp the condition and choose a reasonable treatment based on it again.  Children with DMD do not appear to be different from other children at birth and do not show “soft baby” behavior. Sucking, complementary feeding, and head and neck raising are all normal. Gradually, however, the child will show delayed motor development and low motor ability. A significant number of children are unable to crawl very well. The age of walking is also slightly later, usually between 1 year and 3 months and 1.5 years. In early childhood, the child’s motor ability is still rising, gradually acquiring the ability to go up stairs, jogging and low jumping, but it is always worse than that of children of the same age, and often has abnormal posture. Until about 5 years of age, the child enters a plateau and a period of decline. In addition to motor ability, which is the main function affected by DMD, the disease also affects other aspects of physical development, as follows: 1. Weight Children with DMD are born with normal weight and their growth is basically normal thereafter. However, even without any special treatment, children with DMD often begin to gain weight beyond the normal range and become overweight or obese between the ages of 7 and 10. This continues until about age 18, after which weight loss generally occurs. Many parents are concerned about the weight gain associated with oral hormone therapy. It is true that oral hormones (especially prednisone/prednisolone) are responsible for weight gain. However, even without hormone therapy, the weight gain of children with DMD still has its objective pattern, which is related to the metabolic status of the body, reduced exercise, diet structure, etc. It is by no means related to oral hormone administration only. Regarding the issue of weight gain, we have seen many patients who have not experienced weight gain through scientific dietary control. The Chinese diet structure is also more conducive to weight control. In terms of drug selection, Defective (not available in China or the US) has less effect on body weight than prednisone/prednisolone, so adherence to the drug is better in foreign patients. However, other side effects, such as effects on height, changes in body shape (full moon face, etc.), and increased body hair, are not superior to prednisone. The incidence of drug cataracts was significantly higher than that of prednisone. This is confirmed in the latest research results in the United States.  2. Height Height is also a concern for parents. Even without special treatment, 30% of children are below the normal height range at the age of 2 years. From the age of 2 to 12 years, the height of affected children is consistently lower than that of normal controls at that age. There are multiple reasons for the short stature, which may be related to low growth hormone production, low bone turnover, spinal development, and also to the type of defective DMD gene. Of course, height development will be further affected after oral hormone therapy. Some patients abroad will receive growth hormone therapy to help with height growth, but the cost is high. It has also been shown that children with lower height have a relatively good prognosis and a somewhat higher quality of life.  3. Intelligence DMD is a disease that primarily affects skeletal muscle, heart muscle and smooth muscle, but the gene also has an effect on brain development and cognitive function. The vast majority of children with DMD have near normal intelligence, and there are also children with very high IQ, whose daily life and learning are not affected. A small percentage of children with DMD have a greater impact on their mental intelligence development. This difference is mainly determined by the different types of genetic defects. Early genetic diagnosis can be useful in guiding the organization of later learning.  Dietary and Nutritional Strategies In contact with families of patients, many parents ask how their children should eat. This is a complex issue, and the specific plan takes into account all aspects and is the specialty of the dietitian, and is specific to each patient’s situation. But some principles, parents can understand.  1, the appropriate reduction in total energy intake, patients who can walk to control the level of 80% of the same age children, patients who can not walk is at 70%. The exact conversion to food requires the professional advice of a nutritionist.  2.Maintain and appropriately increase the proportion of protein in food, and appropriately increase the intake of protein-rich foods, such as lean meat and beans.  3.Maintain the daily intake of dietary fiber, pay attention to supplementing vegetables, fruits and other foods with high dietary fiber content.  4.Maintain adequate fluid intake and drink more water appropriately.  5, pay attention to supplement foods with high calcium content, such as milk, yogurt, shrimp, kelp, tofu, bone broth, etc. Get more sunlight.  DMD is a long-term chronic disease, master the right principles, persevere and hold up a piece of heaven for your child where they belong.