September 29, 2008

Trouble Swallowing Slows Autistic Child

DEAR DR. GOTT: I have a 13-year-old son with autism. He is very pleasant, tries real hard at everything, does well in school and never complains. Although he is verbal, he has great difficulty expressing his thoughts. He's 5 feet 4 inches, maybe 100 pounds and is a big eater. He's going through puberty.

About eight months ago, he began having difficult and painful swallowing, indicating pain from his neck, along the esophagus, to his stomach. It was torture for him to eat and torture for us to watch him. He lost 10 pounds over Christmas break. Our family doctor put him on Prevacid. Within two days, he was able to eat. He's also been on a multivitamin, amino acids and digestive enzymes for years. Although he is now eating, he still experiences pain in his throat for up to two hours after each meal.

He's had a barium swallow, thyroid ultrasound, thyroid blood test, endoscopy and an X-ray and CT of his neck. All were negative. A video swallow study indicated a possible hypotonic esophagus because the food didn't always go all the way down, and there was one instance of aspiration to which my son did not react. After this limited amount of food during the test, he didn't have any discomfort. At home, he can eat a small snack on occasion without being affected, and at other times he can have one cookie and be severely affected. He is always affected after a meal.

A local ENT wants to take his tonsils out, saying it may help. While removing the tonsils, he can look around to see whether there are any problems.

Between all the waiting to get in to the various doctors, having the tests and getting the results, we tried a very restricted diet on the advice of a chiropractor. My son went three weeks with no gluten, casein, soy, refined sugar, white potatoes, nothing modified or partially hydrogenated and no chemicals. This didn't help.

His doctors feel they have nowhere else to go, nothing else to check, and he will have to live with it. We are desperate, and that is why I am writing to you. No child should have to live in pain like this. For a child with autism to be out of commission following a meal is a huge detriment to his development, both at school and at home. I hope you can help because nobody else can.

DEAR READER: Autism is characterized by impaired social interaction, difficulty with verbal and nonverbal communication, and repetitive or severely limited activity and interests.

Your son appears to have a mild case of autism and is coping well, but the hypotonic esophagus remains an enormous issue.

The esophagus is a tube that carries food from the mouth to the stomach. Based on your description, I believe that your son has a condition known as esophageal achalasia. This condition causes the esophagus to move food ineffectively toward the stomach. This occurs when the muscles between the esophagus and stomach don't relax sufficiently during the process of swallowing food or liquids. This rare disorder is common in middle-aged and older adults but can occur at any age. Symptoms include heartburn, unintended weight loss, cough, regurgitation and difficulty swallowing liquids and solid food.

When an upper GI or barium esophagram reveals abnormal muscle contractions, an enlarged esophagus and/or narrowing at the bottom of the esophagus, diagnosis is confirmed by esophageal manometry. During the hour-long procedure, a thin, pressure-sensitive tube is passed through a patient's mouth or nose, into the stomach. Once in place, the tube is drawn back slowly into the esophagus. The patient will then be asked to swallow. Muscle-contraction pressure will be measured throughout several sections of the tubing. The tube is then removed at the end of the procedure.

Preparation for manometry simply calls for no food or drink for eight hours prior to the procedure. A slight discomfort and a gagging sensation can be experienced during tube insertion. Risks include an increase in salivation that can lead to lung injury or aspiration pneumonia.

Therapy can include calcium channel blockers and long-acting nitrate medications that have been used successfully on some patients to lower the pressure in the lower esophageal sphincter. Injections with Botox paralyze the lower sphincter to prevent spasm.

Esophagomyotomy is an invasive surgical procedure to decrease pressure in the lower sphincter.

Whatever treatment is deemed appropriate, the ultimate goal is to widen the lower sphincter and eliminate the problems your son is experiencing. Speak with his physician or specialist to determine whether any of these options might be in his best interests.

(Dr. Gott is a retired physician and the author of the new book "Dr. Gott's No Flour, No Sugar Diet." Quill Driver Books,; 800-605-7176. Readers can write to Dr. Gott in care of United Media, 200 Madison Ave., fourth floor, New York, N.Y. 10016.)

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