What does the parent of a child with Sanfilippo Syndrome have to look forward to?
Certainly this is a devastating diagnosis with a frightening prognosis. But these children are special and there are hidden treasures along even this path of parenthood. The Jurado family has yet to meet a parent of a Sanfilippo child who did not adore them and view them as one of their greatest “life teachers.” Be sad. Be angry. Cry. Scream and shout. We did and still do some days. But by all means do not miss out on the blessings these children bring. Each day is precious.
The purpose of this page is to provide parents of Sanfilippo children with ome resources to help them with everyday life. The page has sections for helpful hints and examples of some of the special needs Sanfilippo families face. We hope you will find this page helpful and informative.
If you happen to receive a diagnosis at this stage there are some things you should know.
- Communication and redirection is very important for dealing with basic tantrums.
- Have your child’s hearing tested using an ABR (auditory brainstem response.) This is the only objective measure of your child’s hearing. Booth testing and behavioral responses to sound are more subjective and are limited by your child’s level of compliance.
STAGE II: This is arguably the most demanding stage of the disease and modifications to the environment are essential to providing the best quality of life possible for the entire family. Children in this stage of the disease will place anything in their mouths, they will throw objects, and generally their strength and speed are much more advanced than their reasoning skills.
- Create a safe room in your home. These rooms are essential for the parent whose child has significant sleep problems. This could be a bedroom or any other room customized to your child’s needs that is safe to contain them in when you cannot be right with them. Most families recommend having adutch door (AKA half-door) installed as this is more stable than a gate but allows the top half to be open while effectively containing the child. Mount shelves out of the child’s reach for items that could be harmful. Remove dresser handles or install drawer locks as taking out all contents from the drawer and chewing on them as well as flipping the dresser over due to open drawers can be a safety issue. Many parents recommend placing a mattress directly on the floor to allow the child to easily and safely get in and out of the bed is they are awake in the night without direct supervision. Fill the room with balls and soft toys that are safe to throw and chew on.
- If at all possible fence in an area of your yard to allow your child to burn off all that excessive energy while remaining safely contained. Even when under close supervision children at this stage can quickly take off running and may end up on a road.
- Install baby proofing safety devices such as baby gates at stairways and dangerous areas such as kitchens and bathrooms. Place locks on cabinets and drawers. Cover electrical outlets. Keep blinds and cords out of reach.
- If possible mount your television on the wall and out of reach as children usually love to watch TV but are prone to pushing it with great force.
- Try using a mini-trampoline as an outlet for excessive energy. These can be placed in a safe room and are only about a foot above the ground.
- Other ways to help manage your child’s excessive energy include taking them to large open areas for safe chasing and running as often as possible, buy a moonwalker or bouncy house that you can inflate on nice days and allow your child to jump while being contained.
STAGE III: We are still developing information for this stage. As Isabel is in Stage 2, we don't have firsthand experience with this stage. If you have any thoughts that you would like to share with others, please EMail Leslie.