1. Understand the Increased Risk of Cancer
There is no known cure for Ataxia-Telangiectasia, so the goal of physicians is to prolong life by managing the disease's symptoms and keeping a watchful eye for additional illnesses that are commonly associated with A-T. Approximately 25 percent of children with Ataxia-Telangiectasia will develop cancer, most notably lymphoma or leukemia. There is no way to predict which patients have a higher risk of developing cancer, so they are all monitored closely for symptoms. These might include a recurrent or persistent fever, excessive bleeding or bruising, swollen lymph nodes and complaints of body aches and bone pain. When the cancer is found early, there is a better chance of managing the disease and developing a successful treatment plan.
2. Prevent Illness Through Immunizations
Ataxia-Telangiectasia is often associated with decreased immunity, making patients more susceptible to the flu and pneumonia, two illnesses that can have life-threatening consequences for children with A-T because of their inability to cough productively and remove mucous from their lungs. When children are diagnosed with A-T, it is important that they undergo a full immunologic evaluation to determine how capable their bodies are of fighting infections and whether they will respond well to immunizations. Some children with A-T may be able to fight off infections fairly well, while others may require frequent infusions of antibodies because their bodies aren't capable of producing adequate amounts.
3. Watch for Symptoms of Swallowing Problems
Dysphagia is the technical term for a swallowing disorder, a common complication of Ataxia-Telangiectasia as children reach adolescence and early adulthood. An inability to swallow can affect patients' ability to feed themselves, as they may become unable to chew effectively or swallow food. They may also tire easily and be unable to finish a meal. This is not only dangerous because it affects patients' ability to eat, but it also makes it difficult for them to clear liquid and mucous from their lungs.
Swallowing problems aren't always easy to recognize. When some patients lose their ability to cough, they are at risk of "silent aspiration." In such cases, food or liquid enters the airway, yet caretakers aren't alerted to the problem because the patient appears to be swallowing normally. Warning signs that may indicate a swallowing problem include choking or coughing during meals, excessive drooling, weight loss, increasingly long meal times, chewing problems and disinterest in previously enjoyed foods.
