1. Create a Team of Physicians
Russell-Silver syndrome has so many different associated symptoms that it is often necessary to consult with numerous specialists. A geneticist may be needed for the initial diagnosis, a gastroenterologist may be needed to address feeding and weight gain, and you'll need an endocrinologist if it becomes necessary to put your child on a human growth hormone regimen. Finding the right pediatrician to work with the other specialists is also very important. You should look for a pediatrician who is willing to coordinate your team of specialists and learn from them. At the same time, however, you should be your child's fiercest advocate and keep records of all doctor visits and treatments.
2. Treat Your Child Age Appropriately
Despite their short stature and small size, children with Russell-Silver syndrome generally experience normal cognitive development. It's important for parents to treat children with RSS as they would any other child of the same age (with respect for physical limitations). Often parents have a tendency to treat children with RSS as though they are younger than they are because of their size. This will not encourage normal psychosocial development and can cause feelings of dependency. Parents should buy clothes that are age appropriate and seek out age-appropriate activities. Likewise, children should be expected to behave age appropriately and face consequences for misbehavior and irresponsibility.
3. Make Weight Gain a Priority
One of the best things you can do to manage your child's condition is feed her well. Weight gain will help your child catch up in growth and prevent hypoglycemia. Children with RSS require a strict diet to manage growth. Keep track of everything your child eats and how much. Work with your gastroenterologist or a nutritionist to create a healthy diet your child can use to put on weight. Remember, calories need to be adjusted to match activity levels. So if your child has a particularly active day, she should consume more calories to compensate.
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