Page 2 of 26Preface
I wrote this book to teach the family as a whole about Maple Syrup Urine Disease. It is geared to help answer questions about dietary control, inheritance patterns and genetics, and other MSUD related topics. I think these issues are crucial to the well-being and emotional development of the child and of the family.
As a genetic counseling intern, I have worked in a metabolic clinic and have met many families of children with MSUD. I have seen how the diagnosis and the alteration of eating routines can cause a great burden to parents as well as to other family members. In creating this book, I want to stress that you, the parents, are the experts on life with MSUD and while I still have much to learn, I can offer some helpful hints and advice.
Parents have the hard task of managing the child's food intake while at the same time teaching independence. The main goal of MSUD and Me is to portray MSUD in a positive manner and in turn, help parents express this attitude to their children. Children's attitudes towards their diet are related to parental and familial dynamics and compliance. Kids learn from example and as parents, you need to stress the similarities between your child and other children rather than making MSUD and the diet the focal point.Teach your child what he/she can eat and do rather than focusing on the restrictions. This can help children see the diet as a normal part of life rather than a hindrance.
MSUD and Me can be used in many ways, depending on the age of your child, as a stepping-stone to introduce some of the diet issues and related vocabulary. MSUD and Me uses simple language to help children understand the concepts and information regarding MSUD. The book can also be given to siblings and other children to read and learn about MSUD. Each family is different and parents must determine what type of information they want to share with their children and when. Therefore, I recommend that parents review the book before sharing it with their child. I hope you enjoy this book with your family and children in your journey to learn more about MSUD.
Jessica Rowse MS