Symptom Management

Children with MLD often have difficulty with swallowing, seizures, tight muscles, nerve spasms, or reflux. All of these conditions can be addressed with medication, and you should work with your child’s doctor to develop a medication regimen for your child. Keep in mind that medications that work well for a period of time may need to be adjusted after awhile, and we work with our doctors regularly to adjust medication levels depending upon the boys’ needs. Below is a listing of the medications our boys take:

Some of these medications can be made into a liquid form while others are available in pills. If only pills are available, we grind them up into a powder using a mortar and pestle (available at cooking stores). We then mix the powder with other liquid medication or water and administer it with a syringe through the G-tube. However, different drugs may require specific handling, so please consult your physician for guidance on how to administer each medication.