What you need to know
Changes to the diet will not prevent disease progression, but limiting milk, sugar, and dairy products has helped some individuals experiencing excessive mucus. It is important to discuss dietary needs of the child with the parents to learn if there are restrictions. If there isn’t a special diet required for an individual with an MPS, a well-balanced diet is important.
If the child is experiencing sleep apnea or obstructive airway disorder, surgery to remove tonsils and adenoids may be done to improve breathing. Sleep studies can assess airway status and the possible need for nighttime oxygen.
Surgery may also be done to correct hernias, help drain excessive cerebrospinal fluid from the brain, and free nerves and nerve roots compressed by skeletal and other abnormalities.
Mobility problems, hearing loss and vision difficulties are the major medical complications in MPS that may need the special attention of school personnel in program planning. It is important to discuss the nature of the student’s condition and implications for school activities. The child’s physicians will determine the student’s permitted activity levels.
School age children with MPS may have multiple doctors and specialist visits to monitor medical conditions.
What you can do
- A yearly check-up and studies as needed should occur in the child’s Medical Home.
- Be aware of any changes in behavior or mood that seem out of the ordinary and notify the parents.
- Be aware of changes in vision as the corneal clouding can be progressive
- Note any excessive sleepiness during the day and if napping takes place at school, report any changes in snoring
- Be aware of any progression in the joint disease that may make their schoolwork more difficult
- It is important to be aware of any academic changes. Contact parents when any differences are noticed.
- Seizure emergency plan should be in place if seizures are part of the child’s condition
- Students may need to visit the nurse to take medications during school
- If there are heart issues, consider AED devices and staff education on their use, as well as CPR training for staff.