I took Waverly to Children's National last Friday to meet with her ENT. He is one of our favorite doctors and squeezed us into his busy schedule after I emailed him with my concern. Waverly has been waking up most mornings in a huge puddle of drool (12-24 inches wide typically). Given her lowering muscle tone and inability to shift her body weight in bed, I have been worried about her choking or aspirating on all of the saliva. He shared that worry with me. He thinks that excising (removing) some of her salivary ducts will help limit the saliva production, without overly drying her mouth.
It is a big surgery, he estimates about 3 hours. There are always additional risks with anesthesia given her Sanfilippo diagnosis. However, she has never had any adverse reactions. The benefits of the surgery could mean a better quality of life for her.
I have talked with a few other Sanfilippo parents who opted for this surgery and heard mostly positive responses. I also spoke with a few MPS specialists to get their take on whether she should have the surgery. The response from doctors has been overwhelmingly positive.
Waverly's ENT and I are going to have another phone discussion soon to answer some lingering questions. We may a surgery scheduled soon.