My son is 10 years old and has Down syndrome. He is severely speech delayed. When he was younger, he had constant ear infections. He had tubes placed and his adenoids removed. He sits up while sleeping and hangs his head back to breathe better. The doctors tested for hearing loss, and he seems okay as long as there is no fluid in the middle ear. They recommend he have his very large tonsils removed. My hopes for this procedure are for my son to have more audible speech and the ability to breathe better. Are my hopes too high?

J.M.

If your son has huge tonsils, they may be affecting the SOUND of his speech (his ability to enunciate clearly) but they are certainly not contributing to his speech delay. Hearing loss can contribute to speech delay, but it sounds like his hearing is fine. If he has not been seen by a speech therapist, he needs to be evaluated. Contact his school or the school district, since they usually provide free speech-therapy services.
Large tonsils can affect the sound of speech in two ways. Your child may have a muffled voice (as if he is trying to talk with food in his mouth). Alternatively, he may have a "hypernasal" voice ("too much nose" in his voice). When we produce certain sounds, the soft palate moves to touch the back of the throat. This seals off the nasal cavity above from the oral cavity below. Large tonsils can prevent the soft palate from reaching the back of the throat. As a result, air escapes from the nasal cavity at inappropriate times, such as when the individual makes "p" sounds. This is known as hypernasal speech. The palate is not really too short. It is merely blocked (by the tonsils) from reaching the back of the throat.

A speech therapist could give you valuable insight into the nature of your son's speech problems by being able to identify muffled or hypernasal speech. A speech therapist would NOT be the best person to comment on your son's breathing problems at night. This question belongs to your son's ear, nose and throat doctor.

Does your son snore? If his neck is not hyperextended during sleep, does he ever stop breathing? There would be a characteristic pattern of the child snoring, then a period of time when he makes little or no noise, and then loud gasping or snorting as he struggles to "catch his breath."

Your son's doctors probably interpret his neck hyperextension as his attempt to position his airway so that he has the least difficulty breathing. If he has big tonsils, this may indeed be the reason for his hyperextension. On the other hand, many children with Down syndrome have tongues that are too large for their mouths. (Usually, the child's tongue is normal-sized, but the lower jaw is too small.) If this is your son's problem, then a tonsillectomy may not significantly improve his airway. If your son has BOTH problems (large tonsils and a tongue too big for his mouth), then a tonsillectomy may help the problem but not completely correct it.

While a careful physical examination can be helpful in detecting whether your son has one or both problems, the best method of examination is a sleep study combined with fiberoptic examination of his airway. A sleep study involves monitoring your son during sleep for his breathing rate, heart rate, brain waves, the level of oxygen in his blood and other factors. While he is sleeping, the doctor will pass a slender, flexible telescope down his nostril, to the back of his throat. The doctor will be able to see exactly what is blocking your son's airway during sleep -- his tonsils, tongue or perhaps both. The sleep study will also determine the severity of his sleep breathing difficulties. His doctor would then know for certain whether an operation is really necessary.

This is, unfortunately, an expensive test that is not widely available. Nevertheless, since your son is disabled, he should be eligible for state assistance. This should cover his medical bills, including a sleep study.