There is no one recommendation for testing children for Alpha-1. This is a question that should be answered with a licensed genetic counselor and the child’s physician to understand the chance that the child will have Alpha-1 based on the inheritance pattern. Before testing a child for Alpha-1, parents need to understand the positives and negatives including access to life insurance. A child with unexplained liver disease should be tested for Alpha-1. There is no treatment for lung or liver disease given to children.
A child that has a history of Alpha-1 in their family should maintain a healthy lifestyle including regular check-ups with scheduled vaccines (including Hep A and Hep B) and maintain a healthy weight. Parents of children with Alpha-1 should not smoke, as there is evidence that the lung is very susceptible to injury, even in childhood, that may not show up for decades. As they grow older, they should avoid smoking as well as occupational lung damage and heavy air pollution.
Alpha-1-To-One, Spring 2020 – Alpha-1 Foundation
There is no one recommendation for testing children for Alpha-1. This is a question that should be answered with a licensed genetic counselor and the child’s physician to understand the chance that the child will have Alpha-1 based on the inheritance pattern, and any health problems that may be present. Before testing a child for Alpha-1, parents need to understand the positives and negatives including access to life insurance. A child with unexplained liver disease should be tested for Alpha-1.
The Afforadable Care Act protects those with pre-symptomatic genetic diagnosis; however, life insurance is different and your child may never be able to get life insurance with a genetic predisposition. This must be disclosed, even if it is through confidential testing when securing life insurance.
Alpha-1-To-One, Winter 2021 – Alpha-1 Foundation