Agammaglobulinemia, x-linked

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Is hygiene important in children with X-linked agammaglobulinemia?

Good hygiene is always important, but particularly so for people with X-linked agammaglobulinemia (XLA). People with XLA should take care to wash their hands before meals and when in the restroom. Washing hands should include vigorously rubbing for about 15 seconds using soap. Alcohol-based hand sanitziers can be used when the hands are not visibly dirty. Hand wipes are recommended for travel or for children to take to school.

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Can my child with X-linked agammaglobulinemia play sports?

What can I do for siblings of kids with X-linked agammaglobulinemia?

Is eating right important for people with X-linked agammaglobulinemia?

How do children with X-linked agammaglobulinemia go from pediatric care to adult care?

Is exercise important for people with X-linked agammaglobulinemia?

Is proper sleep important for people with X-linked agammaglobulinemia?

Should my child with X-linked agammaglobulinemia be vaccinated?

Are there any drugs that should be avoided by people with X-linked agammaglobulinemia?

Should my child with X-linked agammaglobulinemia take all of his antibiotic medication if he's feeling better?

Should individuals with X-linked agammaglobulinemia quit smoking?

Where can I get financial help for X-linked agammaglobulinemia?

What is the life expectancy of someone with X-linked agammaglobulinemia?

Should I tell my child's school the diagnosis of X-linked agammaglobulinemia?

How can my doctor learn about X-linked agammaglobulinemia?

Will my insurance cover treatment for X-linked agammaglobulinemia?

Can my child with X-linked agammaglobulinemia play sports?

Sports are an important form of exercise for children and adults, and participation in sports is encouraged for people with XLA. If you have concerns about your child participating in physical contact sports, you can discuss them with your doctors.

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What can I do for siblings of kids with X-linked agammaglobulinemia?

X-linked agammaglobulinemia may demand a lot of time and focus from parents. As with similar disorders, it is easy for healthy siblings to feel as if they have been pushed aside. Although studies have shown that siblings of children with chronic illness tend to develop strong levels of compassion and empathy, these studies have also shown that siblings can develop feelings of jealousy and anger and high levels of anxiety. Parents can work with their other children by having clearly defined roles and responsibilities within the family structure. Siblings can help with the care of their sibling with the chronic illness. Parents are encouraged to make time for activities especially for healthy siblings and to talk with and encourage healthy siblings to address their concerns and feelings. Some children may benefit from support outside of the immediate family including therapists or doctors. The Sibling Support Project is a nonprofit organization that serves the concerns and needs of siblings of people with special health, developmental, and mental health needs.

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Is eating right important for people with X-linked agammaglobulinemia?

Good nutrition is always important, but especially so for people with X-linked agammaglobulinemia. Eating healthy and getting proper nutrition gives the body the energy and resources to fight off infections. Eating right always makes good sense, and people with antibody deficiencies should take extra care to maintain a healthy and balanced diet. A lack of proper nutrition makes everyone more likely to get sick. Talk to you doctor or to a nutritionist to learn more about eating well.

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How do children with X-linked agammaglobulinemia go from pediatric care to adult care?

Many people with X-linked agammaglobulinemia find it challenging when it's time to move (transition) from pediatric to adult health care services. One big change is leaving a doctor with whom you have a long-standing relationship, a doctor who is familiar with both your condition and you. It can feel like 'starting over' as you'll begin to work with new doctors and a new medical team. Another challenge in moving to adult care is that young adults must take greater responsibility for their health. They must manage their disorder and manage their medications. They must bear greater responsibility for decisions concerning their health. Adolescents should be encouraged to make decisions about their care as early as possible to make this transition easier. Some hospitals have programs to help children with chronic disease transition to adult care services. X-linked agammaglobulinemia support groups may also provide information or support on how to move from pediatric care to adult care services and what to expect. The Immune Deficiency Foundation provides information on how to best transition care for people with primary immunodeficiencies like X-linked agammaglobulinemia.

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Is exercise important for people with X-linked agammaglobulinemia?

Exercise is important for everyone, but particularly so for people with X-linked agammaglobulinemia. Exercise can help to reduce stress and anxiety. Specific forms of exercise such as swimming, biking or jogging can help improve lung function. A healthy lifestyle including exercise can help people become physical fit.

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Is proper sleep important for people with X-linked agammaglobulinemia?

Proper sleep is important for everyone, not just people with X-linked agammaglobulinemia. Studies have shown that erratic sleep patterns cause the immune system to not work as well. There are lots of ways you can improve your sleep. You can avoid coffee or caffeine in the evening, avoid staying up late, avoid long naps in the middle of the day, and avoiding heavy meals in the evening or eating something right before bed.

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Should my child with X-linked agammaglobulinemia be vaccinated?

Children with X-linked agammaglobulinemia should not receive live viral vaccines such as the live polio vaccine. They should receive the inactivated vaccine. Siblings of children with XLA should also receive inactivated vaccines. Other live viral vaccines to be avoided are the measles, mumps, rubella (MMR) vaccine, the chicken pox vaccine (Varivax) and the rotavirus vaccine (Rota-teq). Although unlikely, a live vaccine, particularly the live polio vaccine, can cause the disease to develop rather than prevent it in a person with X-linked agammaglobulinemia. Your immunologist (the specialist who diagnoses and treats disorders of the immune system) can talk to you about which vaccinations are appropriate for your child.

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Are there any drugs that should be avoided by people with X-linked agammaglobulinemia?

Doctors recommend that corticosteroids, or any drug that suppresses the immune system (immunosuppressant drugs), should be avoided as much as possible in people with X-linked agammaglobulinemia (XLA). Corticosteroids are drugs that are primarily used to treat inflammation, allergies and itching. They lessen swelling, redness, itching, and allergic reactions. Always talk with your doctor or your child's doctor about which medications are safe to take for someone with XLA.

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Should my child with X-linked agammaglobulinemia take all of his antibiotic medication if he's feeling better?

You should always follow your doctor's instructions about taking medications. If the course of treatment is 14 days, then you should take antibiotics for the full 14 days. Just because your feeling better doesn't mean that the bacteria or infection is gone.

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Should individuals with X-linked agammaglobulinemia quit smoking?

Smoking is dangerous for everyone, but even more so for people with X-linked agammaglobulinemia (XLA) because they are at risk for repeated respiratory infections. Chronic lung disease is one of the most common long term complications of XLA. Because smoking can damage the lungs, it is important that people with XLA do not smoke or quit smoking if they do.

References
  • Howard V, Greene JM, Pahwa S, et al. The health status and quality of life of adults with X-linked agammaglobulinemia. Clin Immunol. 2006;118(2-3):201-8.
Where can I get financial help for X-linked agammaglobulinemia?

The medical cost of X-linked agammaglobulinemia can be difficult for some families. Some families lack the resources necessary to provide for a child who needs continuous medical treatment. There are several organizations that provide financial assistance specifically for these families. These groups include:

  • The Jeffrey Modell Foundation - Their “Roots & Wings” program was established to provide travel, “Wings”, and related support, “Roots”, to families whose child has been identified with a potentially life threatening Primary Immunodeficiency. They hope to make life easier, reduce the burdens, and enable children to have a second chance at life.
  • The Immune Deficiency Foundation - The Immune Deficiency Foundation provides support and assistance to people and families dealing with primary immunodeficiency disorders including X-linked agammaglobulinemia.

The National Organization for Rare Disorders has links to organizations that can provide financial assistance.

The National Human Genome Research Institute has extensive information on finding financial aid for medical treatment and services.

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What is the life expectancy of someone with X-linked agammaglobulinemia?

In the last couple decades the outlook for X-linked agammaglobulinemia (XLA) has dramatically improved. Most people will be able to live full, active lives and pursue whatever career and hobbies they want. However, XLA must be treated carefully in order to prevent serious infections that can damage organs or cause life-threatening complications. X-linked agammaglobulinemia is a serious, but treatable disorder.

Although X-linked agammaglobulinemia is treatable, people with XLA still have a greater risk of developing an infection than people without the disorder. They may miss more days of school or work, or require hospitalization more often than people who do not have the disorder.

References
  • Conley ME, Howard VC. X-linked Agammaglobulinemia. GeneReviews website. http://www.ncbi.nlm.nih.gov/books/NBK1453/ Accessed May 16, 2016.
  • Winkelstein JA, Conley ME, James C, Howard V, Boyle J. Status of Adults With X-Linked AgammaglobulinemiaImpact of Disease on Daily Lives, Quality of Life, Educational and Socioeconomic Status, Knowledge of Inheritance, and Reproductive Attitudes. Medicine (Baltimore). 2008 Sep; 87(5): 253–258.
Should I tell my child's school the diagnosis of X-linked agammaglobulinemia?

One decision families with a child with X-linked agammaglobulinemia (XLA) must make is whether to share with their child's diagnosis with schools. If the disorder does not affect a child's schooling in any way, parents may not feel the need to disclose this information. However, if a child is expected to miss more days of school than usual, required to take medication while in school, or if the child will need some type of extra accommodation, it is important for the school to know about the diagnosis.

Children with XLA may be eligible for an individual education plan (IEP) or a 504 plan. An IEP is a document that helps to guide the education of a child with a disability or special needs, including special health care needs in some situations. The plan is individualized for each student. A 504 plan ensures that students with disabilities or health conditions can fully participate in school and have access to the same educational opportunities as all children. Parents are encouraged to provide a school with a packet of information on XLA and to work with school officials including teachers, nurses, psychologists, the principal, and other professionals.

The U.S. Department of Education has information on individual education plans and on 504 plans. The Immune Deficiency Foundation has an extensive guide on managing issues at school called School Guide for Students with Primary Immunodeficiency Diseases.

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How can my doctor learn about X-linked agammaglobulinemia?

It is very possible that a primary care physician will not know a lot about X-linked agammaglobulinemia. The Immune Deficiency Foundation has a service called the Consulting Immunologist Program. This program allows doctors to consult with expert clinical immunologists about patient specific questions and obtain valuable diagnostic, treatment and disease management information. People with X-linked agammaglobulinemia can direct their physician to this service.

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Will my insurance cover treatment for X-linked agammaglobulinemia?

Insurance reimbursement is a complex topic for everyone, not just people with X-linked agammaglobulinemia. In most cases in the United States, health insurance covers antibody replacement therapy for X-linked agammaglobulinemia. However, every policy is different. Over time, there can be considerable out of pocket costs even with insurance coverage. Individuals or families dealing with a chronic disease need to have a close relationship with their insurance company as well as their doctors. Supports groups like the Immune Deficiency Foundation provide lots of information on how to handle insurance and coverage issues with primary immunodeficiencies like X-linked agammaglobulinemia. They have a specific section on their website called The Patient Insurance Center.

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