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What are basic recommendations for a ZZ or SZ Alpha-1 child?

Most Alpha-1 kids maintain a healthy, active and normal life including going to school, participating in sports coupled with regular immunizations and check-ups. Keeping updated on vaccines is extremely important. A well-balanced diet is important and dietary supplements, herbs and milk thistle, are not recommended as they have not been tested by the FDA for purity or safety and can hurt the liver.

A child with Alpha-1 liver disease should be followed by a pediatric liver specialist and a primary physician. Most children with Alpha-1 lead healthy lives and are not sick and require a minimum annual check-up with a liver specialist. Annual pulmonary function tests are only recommended in childhood if the child has symptoms or is sick. These tests are on a case by case basis depending on how the child is doing. A lung specialist is not needed until adulthood, if lung symptoms occur.

It is recommended that nonsteroidal anti-inflammatory drugs (NSAIDS) not be used on children with Alpha-1. These drugs including aspirin, ibuprofen and naproxen have shown in animal studies to be highly toxic to the liver and kidneys. Acetaminophen, such as Tylenol, is a miscellaneous analgesic for mild to moderate pain or fever and is safe to take in ordinary doses. It is even given to liver transplanted patients.

Alpha-1-To-One, Spring 2020Alpha-1 Foundation

A child that has a history of Alpha-1 in their family should maintain a healthy lifestyle including regular check-ups with scheduled vaccines 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.

All Alpha kids should have annual appointments with specialists to get baseline health information and see if there is any disease progression.

Yearly blood tests

Pulmonary function testing usually begins at age 18 unless the child has symptoms of asthma or other breathing problems that lead to medical treatment before that.

Alpha-1-To-One, Winter 2021 – Alpha-1 Foundation