We know it can be overwhelming to learn that your child has a condition that may increase their risk of developing certain diseases. But there are things you can do to mitigate that risk for your Alpha child. Involving them in health decisions in an age-appropriate way, educating yourself about Alpha-1, and finding out what risk factors to avoid can go a long way in keeping your Alpha child healthy. Keep reading to learn more about what you can do as a parent to help protect your child’s health.

Involve your kids

As you begin the process of educating yourself about Alpha-1 and begin treatment planning with your child’s healthcare provider, consider including them in the process in an age-appropriate manner. This exposure will help alleviate both your fears, promote learning, and facilitate their understanding of Alpha-1. It gives you common ground and can serve as the starting point for future health discussions. Helping your child form healthy habits early in life like eating a healthy diet, exercising regularly, utilizing proper handwashing technique, and avoiding health risk factors can help them prevent infections, lessen disease risk, and ultimately keep them in good health.

While you may be tempted to spare your children from having to confront the realities of Alpha-1 and its risks for disease development, giving them the crucial information they need to stay healthy can help them foster a sense of control and independence with regard to their condition. Most children do not wish to be treated differently than their peers, and their desire to “fit in” may perhaps lead them to take risks with cigarettes, alcohol, and other substances of abuse. Helping them understand the increased risk they may face by engaging in what are already unhealthy or dangerous activities can help them make the right choices for themselves.

By involving your children in discussions about Alpha-1 early on in their lives, they will be better prepared to make decisions during their adolescent and young adult years. The more your children know about Alpha-1 and its associated risks, the better equipped they will be to navigate their health choices in the future. Many children are able to handle the realities of having a chronic condition better than we imagine they can.

 

Learn the basics of healthcare for Alpha-1 children

Alpha children are generally healthy and their need to visit a healthcare provider is usually sporadic and centered around typical childhood illnesses and injuries. The AlphaNet medical team encourages parents or guardians to seek formal testing of liver and lung function during one of these visits to establish a “baseline” against which future testing can be compared. Liver function testing is a simple set of standard blood tests. While lung function testing can be more complex, a simple spirometry test should be obtained to ensure it is normal. Not all children grow their lungs to normal size and lower lung function later in life can sometimes be due to lung injury in childhood.

Making sure your child maintains a healthy diet as outlined by their pediatrician and ensuring that they get the right amount of physical activity can also help keep their Alpha-1 health in check. You can find helpful nutrition and exercise tips for all Alphas in the Big Fat Reference Guide (BFRG). Remember to consult your child’s pediatrician before making any drastic changes to their diet.

Avoid risk factors

One of the most important things parents of Alpha children can do is protect them from risk factors that may lead to the development of diseases associated with Alpha-1. There are a number of substances commonly found in the home and outdoors that can be particularly irritating for Alphas. We encourage you to review these items with your children and determine whether or not your child may have sensitivities to any of them.

Two risk factors have special significance for children — smoking, and childhood asthma and allergens. A suspected link between parental cigarette smoking during an Alpha’s early years, and the development of lung problems later in their lives, appears to exist. And studies have shown that children who carry just one defective Alpha-1 gene may have lower lung function if they smoke in the future. There also is mounting evidence that there is an association between abnormal Alpha-1 phenotypes and childhood asthma.

Much remains to be learned about identifying the risk factors to which Alphas may be exposed during their childhoods and how these exposures might influence the development of disease later in life. Nevertheless, common sense dictates there are a number of preventative measures parents can take to help maintain the health of their children with Alpha-1.

Smoking and vaping

Cigarette smoke is known to be the single most important risk factor for the development of lung disease, and it appears children are particularly sensitive to the effects of secondhand smoke. Studies have shown that a child born to a mother who smokes, or who lives in a home with an individual who smokes, has a much higher incidence of developing asthma and respiratory infections. Frequent respiratory infections, with their associated inflammatory response, are known to cause lung damage, even in non-Alphas. Smoking marijuana is not necessarily less dangerous than smoking cigarettes, as far as lung health is concerned, and children with Alpha-1 should not be exposed to marijuana smoke either.

Less is known about the harmful effects of vaping and being exposed to those who vape. The liquids used to vape vary greatly while electronic cigarettes and vaping themselves are still relatively new. Many studies are ongoing but some early findings suggest that a number of the organic compounds used in vaping may be carcinogenic.

To protect your children, keep the home environment smoke-free, and ask friends and relatives to not smoke around your children. Educate your children about the risks of smoking, in general, and in relation to Alpha-1. Be aware of the peer pressure inherent in the world of teenagers and support your children’s efforts to resist this pressure. The AlphaNet medical team does not recommend vaping for individuals with Alpha-1.

Asthma

Asthma is the most common serious chronic disease of childhood, affecting as many as six million children under the age of 18 in the United States. In 2016, approximately 8.3% of children in the United States had asthma. As with many aspects of Alpha-1, there have been few, if any, specific clinical studies exploring a link between Alpha-1 and childhood asthma. However, because of the growing national health concern over the sharp increase in childhood asthma, and because of the known risks associated with Alpha-1, asthma cannot be overlooked in a discussion of Alpha-1 children.

A diagnosis of asthma means your child’s pediatrician should be more vigilant for the first signs of more permanent types of lung injury. If your child has Alpha-1 and asthma, make sure you familiarize yourself with your child’s symptoms and triggers and learn how to limit their exposure to triggers, which include many common allergens. You can work with your child’s pediatrician to build a long-term treatment plan. If you suspect your child may have asthma, make note or record any symptoms they may be presenting and consult with their pediatrician.

Symptoms of asthma commonly include:

  • Coughing
  • Chest tightness
  • Shortness of breath
  • Wheezing
  • “Noisy” breathing

Parents may notice that asthma symptoms can interfere with their child’s ability to participate in many school and extracurricular activities. Children with asthma may have less stamina than their peers, and because of this, they may try to limit or avoid the physical activities (running, jumping, rigorous sports) that cause excessive coughing and wheezing. While asthma is a chronic illness, it is not necessarily a progressively debilitating one. Once treated with proper medication, exercise has been shown to improve airway function, and it can and should become part of your child’s daily activities.

Asthma can be triggered by a family history of allergy and the child’s exposure to allergens. An allergen is any substance that can trigger an allergic reaction. Common allergens found in the home include:

  • Dust mites,
  • Insect droppings
  • Animal dander
  • Mold

In addition, there are other triggers that are not allergenic in nature that can worsen asthma. These triggers include:

  • Smoke
  • Cold air
  • Respiratory viruses

If exercise is triggering asthma worsening, more anti-inflammatory medication is needed in the care plan that you should establish with your child’s pediatrician.

If you suspect that allergens may be triggering the symptoms of asthma in your child, ask your child’s pediatrician to conduct allergy tests. Allergy tests can be done on skin testing or with newer blood tests that can be ordered by any healthcare provider. If these tests indicate your child is allergic to certain substances, make sure to minimize your child’s exposure to those allergens as much as possible.

Clear your home of asthma triggers

Try your best to keep your home clean and free of dust, mold, pests, smoke, and pet messes. You can learn more about these five common asthma triggers and find suggestions on what you can do to reduce your child’s exposure to them when you visit the Big Fat Reference Guide to Alpha-1 (BFRG). Keep in mind that not all of the asthma triggers listed in the BFRG affect every person with asthma, and there may be other potential asthma triggers not listed there. Consult your child’s pediatrician for more information.

Things to Remember

Most children with Alpha-1 are expected to live a healthy and normal childhood. Parents should be aware of the risks for the development of lung disease as their child ages and take steps to minimize those risks. Talking with your children about their Alpha-1 diagnosis can help identify and alleviate any concerns they may have and help you better answer their questions. Knowledge is the key to understanding the implications of their diagnosis. Armed with knowledge and your support, they can make healthy choices for their future.

 

For more information on how to navigate Alpha-1 in childhood check out the Big Fat Reference Guide.