How to Deal with Pfeiffer Syndrome

How to Deal with Pfeiffer Syndrome

Although the timing and sequence of surgeries could differ from child to child, most children with Pfeiffer syndrome will need about two-four skull operations over a whole lifetime. The earliest skull surgery is usually done numerous times in the 1st 18 months of life.
Mid-face surgery is another option to fight against Pfeiffer Syndrome. The most frequently used surgery for moving the bones of the mid-face forward in Pfeiffer syndrome are referred to as a LeFort III operation. This surgery is typically not done before your kid is six-eight years of age. The main indications for performing a LeFort III operation include severe obstructive sleep apnea which can’t be improved without surgery or substantial patient issues about appearance. While the operation is going on, the bones of the mid-face are cut across the top of the nose, along the floor of the orbits and across the cheekbones. They can use the same incision spot on the child’s head for most of the other cuts. A supplemental incision could be placed within the mouth. They will make sure not to place any marks on your child’s face. After making these cuts, the bones are either moved quickly into their final position & secured in place with plates and screws or moved little by little by a process referred to as rigid external distraction. The age of your kid at the time of surgery and the distance that the bones must be moved, will determine which method will be used.
Obstructive sleep apnea is a common side effect of the syndrome also. Young kids that have Pfeiffer syndrome often have obstructive sleep apnea as a result of the underdevelopment of the mid-face. You will be monitored by your cranial team for any signs of sleep apnea. In mild cases of sleep apnea, medicines might be adequate to boost breathing. If more significant obstruction occurs, tonsillectomy or continuous positive airway pressure (CPAP) masks may help alleviate symptoms. Frequently, a tracheostomy might be demanded in infants with Pfeiffer in order to ensure sufficient breathing. Mid0face surgery, like a LeFort III operation, may be required as your child gets older so that you can totally treat obstructive sleep apnea or allow for eventual removal of a tracheostomy placed in infancy. In the end, the main goal in all of these methods is to make certain a good airway so that your child can get sufficient oxygen to help her develop to her fullest potential.

You might not have expected so many solutions to this horrible disease, but that is always a good thing. Because 1 out 100,000 people gets this syndrome and they can use all the help they can get. At first it will be hard, dealing with all the surgeries and the medications along with it. But, once it’s all over and done with, the patient’s life will be a lot easier and at ease. Surgeries like these save lives all the time, and it is a miracle we have such things.