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What are immune system disorders?


The immune system -- your body's defense system against getting sick -- is made up of organs, tissues, cells, blood and other fluids that work together to defend the body against germs. Germs are bacteria and viruses that can harm the body. Germs are what make us sick when we catch a cold or an infection. The amazingly complex immune system can recognize millions of different enemies to the body. It can call on special cells and secretions to find and destroy those enemies. We count on our body's immune system, sometimes with the help of medicines such as antibiotics, to eliminate germs that cause infection. Some people are born with an immune defense system that is faulty. Immune system disorders (sometimes called Immunodeficiency Diseases) happen when the immune system does not defend the body normally and can affect any part of the immune system.


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What are some common signs of immune system disorders?


You may suspect an immune system problem if your child has one or more of these problems:
  • Eight or more ear infections in a year.
  • Two or more serious sinus infections within a year. (Sinuses are the air passages in the bones of the cheeks, forehead and jaw.)
  • Two or more pneumonia cases within a year.
  • Need for intravenous antibiotics to clear infections. (Medications go directly into your child's veins in a hospital.)
  • A family history of immune system problems.



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What can I do to help my child?


You have made an important first step by reading more information on immune system disorders. Another step you can take is to talk to other parents of children with immune system problems. They have gone through what you are going through now and perhaps can help. You also can get great help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children, the better the results for the child and family.



Below are some checklists to help your child. Remember, you are not alone.

THINGS I CAN DO TO HELP MY CHILD WITH IMMUNE SYSTEM DISORDER


Getting Started

IN THE STATE OF FLORIDA:
 Get my child's hearing evaluated (tested):

If your child is between ages birth to 3 years old and seems to have a problem hearing, speaking, or learning, your child can be evaluated by a team of experts through the Early Steps  program for free. Your child may be eligible for free services. Contact a center close to your home.



If your child is 3-5 years old and has problems with hearing, learning, speaking, playing, seeing and/or walking, he or she can still receive free testing through Child Find/Florida Diagnostic and Learning Resources System (FDLRS/South). Testing also is provided for special-education programs. (If your child is already in the Miami-Dade Public School system, your child must be tested through the school.)



Contact Children's Medical Services (CMS): CMS local offices sometimes refer children to medical centers that work with CMS. Those centers provide services to help care for children with disabilities, special needs or major medical conditions, ranging from early intervention programs such as Early Steps to ones for a specific medical condition.



Work with my child's service providers: A service provider can be your pediatrician, an audiologist, a teacher, a principal, a social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child's life. Service providers are there to help you and your child. Some tips for speaking with service providers:
  • Feel free to ask questions and make comments. No one knows your child better than you do. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.


  • If you think your child needs something in particular, keep asking until you get it or until you understand why it is not needed.


  • Work with professionals in early intervention or in your school to write your child's IFSP or IEP to reflect your child's needs and abilities. Be sure it includes related services such as speech-language pathology, physical therapy, and occupational therapy if your child needs these. Don't forget about assistive technology, too.
 Get more information: Visit more websites. Read a book. Watch a video on immune system disorders. Include your child and family. Talk with another parent. Parent to Parent of Miami  can help you meet other parents and get services. Learn as much as possible about your child's condition. Also ask about any possible side effects of the medicine the doctor gives your child.





 Have my child wear a Medic Alert bracelet: In case of an emergency, vital information on your child's condition is available.

 Talk often with the teacher: Keeping your child's teacher updated on your child's medical condition is very important. Here are some things you can ask your child's teacher to do to make your child's school time more successful. Ask the teacher to:
  • Decrease the assignment load if that is a problem for your child.
  • Establish a routine for getting assignments and homework to and from school.
  • Ask the school to consider shortening your child's school day if necessary.
  • Request hospital/homebound services from the public school if your child needs them (is or will be out of school for 15 days or more).
  • Ask the school to make other accommodations that your child may need.
 Learn about an Individualized Family Service Plan (IFSP): The IFSP team should include you along with the other professionals who need to be part of your child's early intervention program at home.

 Develop an Individualized Education Plan (IEP):. The IEP team should consist of you and your child along with the educators and therapists who need to be part of your child's life at school.

 Include assistive technology as part of the IEP where appropriate:. Click here for some assistive technology accommodations that have been proven helpful.

 Help my child to avoid germs to cut down on infections: Teach your child to wash hands often and completely with antibacterial soap (kills germs). Make sure he or she brushes their teeth at least twice a day. Make sure your child eats a balanced diet to strengthen the ability to fight infections and keep the immune system strong. Keep your child away from people with colds or other infections. Keep your child away from crowded places when you can, especially during flu season.

 Help my child to avoid things that cause my child an allergic reaction: Keep a log of things to which your child is allergic. Don't let your child be around them.

 Make sure my child has a trusted adult with whom to talk: Sometimes children will talk more easily with adults who are not their parents. This happens for many reasons. Usually it is because they do not want to worry their parents. Children need an adult to talk to freely. A therapist, a psychologist or a teacher often can have a conversation with your child that he or she may not share with you.

 Include my child in all parts of my daily life: Encourage your child to take part in family fun, recreation activities and play that can be done safely. Laughing, running, chattering are all fun and good. Talk with your child all day long about whatever you are doing even before he or she learn to talk.

 Plan a play time every day for us to just to be together: Spend time each day just playing and talking with your child. This can be hard to arrange with big families or hectic life styles, but it makes both of you feel better. For ideas on how to play with your young child, go to www.Parenthood.com

 Make music a part of my child's life: Music is a great way to share time together. Try it in the car. There are many children's tapes to which everyone can sing together. Your child can learn words at the same time. Music can be very soothing, and research also tells us that music can heal. Classical music is thought to stimulate brain development.

 If my child is still a baby, I will learn how to do Infant Massage: It is a powerful way to connect with your baby and a soothing activity for both of you. Also it shows your baby that life can feel good and not always be uncomfortable or "medical."


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What are some other ways to describe immune system disorders?


Different kinds of immune system disorders affect a child's body differently. You may hear these terms from your doctor or others:
  • Primary Immunodeficiency: In the worst immune system disorders, all or most of a child's immune system is missing. Since this is a child's main defense against disease and illness, it can be a very dangerous thing. Such children are said to have a primary immunodeficiency. This condition is sometimes called a PI. There are more than 70 different PIs. Each type has somewhat different symptoms, depending on which parts of the immune defense system are not working. Some PIs are life-threatening while some are more mild. All PI disorders have one thing in common -- they open the door to more than one infection at a time. These infections may be severe, long lasting and very hard to cure.

    Healthy children may get colds, coughs and earaches often. For example, many infants and young children with a normal immune system have one to three ear infections each year. Children with PI can get one infection right after another. Or they may get two or three infections at a time. Sometimes the infections drag on and on, or keep coming back. This chronic infection causes the child to be weak. The child may fail to gain weight or may fall behind in growth and development.

    A common problem of children with a PI is chronic sinusitis. Chronic sinusitis is an infection of the sinuses, the air passages in the bones of the cheeks, forehead and jaw. It is chronic because it keeps coming back or doesn't go away. Another frequent problem is chronic bronchitis, an infection of the airways leading to the lungs that keeps recurring. It often causes a child to cough constantly and to have trouble stopping once started.


  • Autoimmune Disorders: Another set of immune system disorders are called autoimmune disorders. Autoimmune disorders happen when the immune system destroys normal body tissues. Autoimmune disorders make the immune system reacts to what it shouldn't. Normally, the immune system can tell the difference between something that belongs in the body and what does not.

    In children with this type of disorder, the immune system gets out of control. Instead of attacking germs and bacteria, it attacks healthy tissue and organs. The body turns on itself. These attacks often lead to other health and medical problems.

    In some autoimmune disorders, the faulty immune system targets a single type of cell or tissue. For example, an immune attack on blood cells can lead to anemia. Anemia is a loss of red blood cells that seriously weakens a child. An attack on islet cells of the pancreas can lead to diabetes.

    Other times the immune system can attack multiple types of cells and tissues. This can cause problems such as arthritis and cancer. It can cause damage to specific places in the body. It can cause problems in your child's joints, nerves, lungs, skin, muscles, kidneys and many other organs.

    There are more than 70 autoimmune diseases. A few of the most common include:
    • Rheumatoid arthritis.
    • Type 1 diabetes.
    • Grave's disease.
    • Lupus.
    • Crohn's disease.
    • Scleroderma.
    • Multiple sclerosis.

  • Acquired Immune System Disorder: In some case a child will acquire or "catch" an immune system disorder. The two most well known are HIV and AIDS. Human immunodeficiency virus (HIV) infects and destroys immune cells, causing AIDS. Acquired immune deficiency syndrome (AIDS) is a disease caused by HIV virus infection. Click here for more information on HIV and AIDS.



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Do many children have immune system disorders?


The exact number of persons with PI is not known. Experts estimate that half the children who see a doctor for infections that happen often are normal. Another 30% may have allergies, and 10% have some other type of serious disorder. Just 10% turn out to have a primary or secondary immunodeficiency disorders. An estimated 400 children are born in the United States each year with a serious PI.


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Is there a cure for immune system disorders?


Not long ago, little could be done to cure an immune system disorder. Today, researchers have developed several possibilities for boosting a child's immune defenses. No one approach works for all types or in all cases. Taken together, though, these new treatments give hope to children's lives.


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What does an immune system disorder mean for the health of my child?


Medications may be taken to help get rid of the symptoms sometimes. Each child's immune system is unique, and treatment varies from child to child. The most common problem in PI disease is a greater weakness because of frequent infections.

For children with PI, infections may happen a lot and be severe, long lasting and hard to cure. Some children with PI are infected with germs that a healthy immune system could resist. These are known as "opportunistic" infections" because the germs take advantage of the opportunity afforded by a weakened immune system. Such an unusual infection may be the tip-off to an immune system problem.

Serious infections, especially bacterial infections, may cause a child to be admitted to a hospital repeatedly. The first goal of treatment is to clear up any current infection. When an infection fails to be taken care of by medicine you can give your child at home, the doctor may need to admit your child to a hospital. Antibiotics and other drugs can be given intravenously (medications put directly into your child's veins).

For chronic infections, a variety of medicines help reduce the symptoms and prevent the infection from getting worse. These medicines may include aspirin or ibuprofen to ease fever and general body aches. Decongestants may be given to shrink swollen tissue in the nose, sinuses or throat. Sometimes your child may need to cough deeply to clear lungs, and expectorants to thin mucus secretions in the airways will be given.


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What does an immune system disorder mean for my child’s intelligence and learning?


Children with Immune System Disorders, Acquired Immune System Disorders or Autoimmune System Disorders will vary in how well they do in school. Some may have little to no changes in learning. Other children may show changes over time. Often these changes are caused by frequent absences from school and the effects of the illness. Children also may have behavior changes such as increased worrying and depression. Living with the disease can affect a personality and a child's ability to get along with friends. Parents need to watch for the direct and indirect effects of the disease on children and learning.


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Will my child be able to attend child care, preschool, regular school or after-school programs?


Many parents wonder if their child will be able to attend school. Know that all children have the right to a free and appropriate public education. For children with HIV or AIDS, this means that your child is entitled to attend school just like all other children. Your child may need the supports found through special-education classes, Section 504 accommodations or hospital/homebound programs.

Before your child is old enough for kindergarten, there are programs designed to help your child's development. In every state and community there is an early intervention program. An early intervention program is for children from infancy to about age 3. In Miami-Dade County this program is called The Early Steps Program. This program helps you determine, find and organize the early supports your child may need. They also will help you find and arrange for the support, information and training needs of your family.


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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric hematologist: A doctor specializing in treating children with blood and immune system diseases.

Pediatric immunologists: A doctor specializing in treating children with immune system disorders.

Pediatric psychologist: A professional who will test your child's ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child's ability to learn has been affected by an immune system disorder. An evaluation is painless and usually doesn't take long.

Pediatric neuropsychologist: A professional who specializes in the relationship of abilities, behaviors and mental skills in children. Pediatric or child neuropsychologists do testing and treatment for children with problems that include developmental, mental, psychological and neurological conditions or issues.

Art or music therapist: A professional trained to use art or music as a means of emotional support and counseling.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.


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What are some websites where I can learn more about immune system disorders?


The Immune Deficiency Foundation http://www.primaryimmune.org/ has a network of support groups that you can find at its website. This is a national non-profit to improve the diagnosis and treatment of patients with primary immunodeficiency diseases through research and education.

National Institute of Child Health and Human Development http://www.nichd.nih.gov/publications%5Cpubs/PrimaryImmunoBooklet.htm Booklet on Primary Immunodeficiency.

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/autoimmunediseases.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.

KidsHealth.org http://kidshealth.org/parent/general/body_basics/immune.html Great site for general information on children's diseases and conditions.

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for kids, teens and parents of kids with medical challenges.

Early Steps www.cms-kids.com/EarlyStepsHome.htm Search Florida's Early Intervention Program home page for many resources listed for parents


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What are some special books I can read with my child?


The Magic School Bus Inside Ralphie: A Book About Germs by Stan Berenstain and Jan Berenstain. Ralphie is sick and has to stay home from school. So Ms. Frizzle and the class take the Magic School Bus to Ralphie's bedroom. They shrink, go inside his body and travel in his bloodstream to his sore throat. The kids find out what's making Ralphie sick and see his white blood cells fight the bacteria in a raging battle. Ralphie's winning! But there's one problem. Now the white blood cells think the Magic School Bus is a germ. How can the class escape? (Ages 4-8)

Bill Nye the Science Guy's Great Big Book of Tiny Germs by Bill Nye, Kathleen W. Zoehfeld and Bernard Bryn. The TV "Science Guy" presents a clear, concise overview that most children will enjoy. Nye covers bacteria, viruses, how germs travel and attack humans, the immune system and the history of the pox, plagues and other little diseases. He touches on how germs were discovered, vaccinations, antibiotics, HIV and AIDs, keeping safe and germ free and why we love and hate germs. Activities are included at the end of each chapter. The step-by-step experiments conclude with a short explanation of how, what, why, when or where. (Grades 2-5)


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