After birth, a number of hospital visits may occur to evaluate and treat more urgent issues. At first, the number of appointments can seem overwhelming, but in time these usually slow to yearly check-ups. Over a lifetime, hospital visits may occur because of kidney infections, surgery, or bowel impactions as well as for other specific medical needs. Over time, your child can take increasing control of her or his own medical care. As an adult, maintaining good health, taking charge of medical care and being able to describe one’s medical history, articulate questions and concerns, and make medical decisions are important parts of life. Here are some resources to make those visits a little easier.
There are a number of concerns that doctors have sometimes suggest to parents that are based on knowledge of other somewhat similar conditions or on visual examination. Sometimes doctors do not know if these concerns are common for the SA/CRS population and may assume a problem when there is not one. For a list of common concerns, click here. With this information, you can provide your doctor with more accurate and up-to-date experiences specific to SA/CRS. This chart of characteristics of SA/CRS and a height and weight chart may be helpful, too.
Keep in mind that as a parent, you will be making many medical decisions for your child. As your child grows, medical decisions will eventually transition.
Transitioning to Independence: A Teen Takes Charge of Her Medical Care