Back To School With Shwachman-Diamond Syndrome

By Kelly Bright

Fall is just around the corner and soon it will be back to school time. All parents get anxious about their child's first day of school, but when you have a child with such a serious medical disorder like Shwachman-Diamond Syndrome worries and fears arise even more. Listed below are a few helpful hints to ensure a good start for our SDS kids.

First, write your child's story in a letter format for the school personnel. I have found that they are more likely to read something that has a personal style. Do this in addition to having a meeting with your child's teacher, school nurse, principal etc. By writing your child's story, you will be giving them something they can refer back to during the school year. It is a good idea to include your child's blood counts and what the range is for children their age. Also, explain pancreatic insufficiency, how it affects your child, and the importance of taking enzymes at the appropriate times.

Second, Medic Alert tags are also important. On the back of the tag, our family listed neutropenia, pancreatic insufficiency, and thrombocytopenia. These three medical issues are the most important for our child keeping in mind each individual's condition varies. Then when they call the Medic Alert Foundation (1-800-863-3420) they are given a more detailed explanation of Shwachman-Diamond Syndrome. Along with our child's specialists and their telephone numbers.

Third, distribute our SDS information brochures to your child's teacher, nurse, and to anyone who will be in contact with your child throughout the school day. I used a highlighter, so important key words would stand out and catch their eye.

Last but not least remember you are the best advocate for your child. Voice your concerns for the sake of your child. Best wishes for the start of a safe and healthy school year.