P.W.
My oldest son, 12, has had four open-heart surgeries. He is currently stable, but will require at least one more open-heart surgery.
Has your daughter been evaluated for a submucous cleft palate? The most common reason that a child is evaluated for a submucous cleft palate is abnormal nasal speech. Other symptoms may include persistent middle ear disease and feeding/swallowing difficulties. A submucous cleft palate may be identified by the presence of a bifid uvula; a very thin translucent strip of lining (mucosa) in the middle of the roof of the mouth; and, a notch at the back edge of the hard palate that can be felt by the fingertip. However, in some children, the palate may appear normal on physical examination despite the fact that the child is experiencing speech problems, persistent ear disease, and/or swallowing difficulties. In such cases, special tests are necessary to fully assess the palate. These tests include x-ray examination and nasopharyngoscopy (looking at the palate through a very small tube that is placed in the nose). These evaluations are most commonly done by members of a cleft palate team. If you suspect your child has a submucous cleft, you should contact a local cleft palate team.
Also, has a VFSS been performed on your daughter? In a videofluoroscopic swallow study (VFSS), the patient swallows a variety of liquids and foods mixed with barium, as a radiologist takes video X-rays of the mouth and throat. These images show how food passes from the mouth through the throat and into the esophagus. They may also reveal aspiration -- foreign matter entering the lungs -- if barium enters the windpipe. Aspiration puts patients at risk for lung infections.
A VFSS is performed with a radiologist and a speech-language pathologist. During the test, a speech pathologist may ask patients to alter their head position, such as tucking the chin, or to try various techniques, such as holding their breath, to improve swallowing.
The test is given to: Patients with a history of upper respiratory infections, unexplained fevers or aspiration pneumonia; Patients who report a lumplike sensation in their throat or pain upon swallowing; Patients who complain of difficulty swallowing liquid, food or medications; Stroke patients who experience difficulty swallowing, throat clearing or choking during meals; Patients with a history of swallowing difficulty who have Parkinson's Disease, cerebral palsy, multiple sclerosis or Lou Gehrig's disease; Patients with a tracheotomy who might be able to tolerate oral feedings or dietary changes; Patients who receive nutrition with a gastronomy tube or nasogastric tube to see if they can tolerate oral feedings.
A VFSS takes about 10 minutes to complete. It is not painful and no preparation is necessary.
An exceptional Otolaryngologist (ENT) (my son sees him) in the Mpls/St. Paul area is Dr. James Sidman, Children's Hospital-Mpls, ###-###-####.
Good luck!