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What is juvenile arthritis?


Arthritis is a term used for more than 100 different conditions that affect the joints and tissues surrounding the joints. Joints are the "hinge" where legs and arms bend or join the body, like the elbow, knee, wrist and hips. The tissues around the joints include muscles and tendons. Some forms of arthritis can affect other parts of the body, most often affecting the skin, eyes and organs inside a child's body. Most cases of arthritis in children are mild.


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What are the symptoms of juvenile arthritis?


Each type of arthritis has specific symptoms, but all types of arthritis have these symptoms in common:
  • Swelling joints with pain and stiffness that do not go away.
  • Mostly affects the knees and joints in the hands and feet.
  • Usually worse in the morning.
  • Symptoms get serious and then will go away for awhile.
  • Chronic (repeating) problem that a child may have all one's life.
Sometimes, a child with juvenile arthritis has symptoms that can't be seen from the outside. This can be very difficult because family, friends, and school personnel may want to treat the child as though there is no problem. In some cases your child may need to limit such activities as running, kickball or gymnastics if symptoms are severe. People may need to be reminded that the discomfort and pain are real.

A severe problem that juvenile arthritis could cause would be eye inflammations (badly swollen eyes to the point where it is hard to see).

Fletcher-Janzen & Reynolds, 2003



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What can I do to help my child?


You have taken an important first step by reading more information on arthritis. You also can talk with other parents of children with arthritis. They have gone through what you are going through now and may be able to help. See the following website for local arthritis parent support groups: http://www.baptisthealth.net/bhs/en/calendar/sgroups/0,2476,3150_32008,00.html

There are other things to help your child. 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.

"GETTING STARTED"
THINGS I CAN DO TO HELP MY CHILD WITH JUVENILE ARTHRITIS


IN THE STATE OF FLORIDA:
 Contact Children's Medical Services (CMS) for medical care for your child:



 Work with my child's service providers: A service provider is anyone who works with you and your child such as your pediatrician, 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. Some tips for speaking with service providers:
  • Feel free to ask questions and make comments. 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.


  • Your child may need a Section 504 educational plan to make sure your child's educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with a disability to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html
 Get more information: Visit more websites. Read a book. Watch a video on juvenile arthritis. Include your child and family. Talk with another parent of a child with arthritis.





 Encourage my child to do proper exercise and to stay fit: Sports and fun activities are important for children with arthritis, helping them to develop confidence in their physical abilities. Encourage your child to choose an activity that exercises joints and muscles without putting too much stress on them. Ask your child's doctor for advice.

An example of a good activity for your child's joints and muscles would be swimming lessons or other water experiences. Water activities allow a child to move arms and legs without putting stress on the joints. Water exercise is very good for a child with arthritis, especially in warm water. It also will help children stay in shape if arthritis pain leads them to avoid certain kinds of exercise.

Dial 211 to find recreation areas and programs


 Find out about getting therapeutic massage for my child: Therapeutic massage can have pain-relieving benefits for children with arthritis through relief of muscle tension. Massage therapy also can improve range of motion. Therapeutic massage is different from relaxation massage. Therapeutic means that it has benefits for a problem or medical condition while relaxation means it is soothing and calming. Find a massage therapist who is trained for therapeutic massage and familiar with arthritis conditions. Ask your child's doctor for a referral.

 Ask the early intervention program or my child's school for special therapy, such as physical or occupational therapy: Your doctor may tell you your child can be helped by special therapy such as physical or occupational therapy. A child in school usually can get these types of special therapy through the school system if it will help to do schoolwork better.

 Encourage my child to go to a camp or recreation program for children with juvenile arthritis: Camps and recreation programs for children with juvenile arthritis can be a positive experience. The staff is trained and familiar with any problems and needs your child may have. It also helps your child meet other children with the same condition. Children can share ideas about how to live with the condition happily and safely, realizing they are not alone with juvenile arthritis.

 Be a good listener and patient with my child: Encourage your child to talk about feelings. Listen carefully when your child is talking. Acknowledge feelings as being real. Your child may be cranky sometimes even if joints are not red and swollen. A child will be "out of sorts" because of pain or discomfort. Be understanding and patient.

 Talk with my child's teacher: Teach your child's teacher about your child's arthritis. Help your child's teacher understand how to help your child. Talk often about how your child is doing at school. Work with the teacher to help your child be successful.

  Ask my child's teacher to do the following if necessary:
  • Make any necessary accommodations for my child's needs.
  • Watch for and learn the signs of pain and tiredness.
  • Offer breaks, and change my child's schedule if needed.
  • Reduce the amount of writing.
 Have my child see a school counselor or other trusted adult to talk with regularly: Children with chronic conditions sometimes have emotional trouble. That emotional trouble can become behavior trouble. It usually begins with the child being angry and frustrated with being different. All children want to fit in. Giving your child a trusted adult with whom to talk will help your child work out ways to deal with anger and frustration before it affects behavior, friendships and school work.


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What are some other ways to describe arthritis?


There are different kinds of juvenile (child) arthritis. You may hear one or more of the terms below from your doctor or others. Some more common types are:
  • Acute Reactive Arthritis. A child sick with an infection may have an acute reactive arthritis afterwards. This usually disappears within weeks or months.

  • Juvenile Rheumatoid Arthritis (JRA). The most common type of chronic arthritis in children can last for months or years. The first signs of arthritis may include limping, a sore wrist, finger or knee. Joints may suddenly swell and remain large. Stiffness in the neck, hips or other joints also may happen.
Rashes can suddenly appear and disappear. The skin gets red and bumpy and often itchy. A rash may appear in one area, then in another. A child also may have frequent high fevers. These seem to happen most often at night and then may suddenly disappear.

The three major types of juvenile rheumatoid arthritis are:
    • Pauciarticular JRA is the most common type of juvenile rheumatoid arthritis in children. It causes joint pain, most often in the knees and ankles. Pauciarticular JRA can make the eyes swollen or inflamed. Children with this type of arthritis need regular eye exams.

    • Systemic JRA affects the entire body. This type of arthritis, more than the other kinds, causes children to be very tired much of the time. Children with this kind of JRA generally won't have much energy. It can begin with a very high fever, rash, or swollen joints and pain.

    • Polyarticular JRA affects many joints and is more common in girls. Polyarticular JRA usually won't cause such problems as high fever, fatigue or poor appetite, but it does cause such problems as swelling joints, pain, limited range of motion (joints can't move normally), and low-grade fevers (a little above normal, but not very high).


  • Juvenile Spondyloarthopathies (JSp) affects children of all ages, but is more common in boys. This group of diseases involves the spine (the backbone) and tendons. Tendons are very tough tissues that attach muscles to bone in the body. Some things most common to JSp Arthritis are:
    • Problems with the spine, especially the sacroiliac joints.
    • Usually affects one joint more on one side of the body.
    • Usually affects the large joints (such as the knees or hips instead of the toe or finger joints).
    • May cause swollen or inflamed eyes.
    • Involves the place where ligaments go into bone.
    • More common with people of a certain inherited gene type (passed down from the parents).


Medicine.Net.com: Juvenile Arthritis, 2005; Kids Health for Parents: Juvenile Rheumatoid Arthritis, 2005 & Arthritis Foundation, 2005

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Do many children have juvenile arthritis?


Nearly 300,000 children in the United States have some kind of arthritis. Arthritis can be mild and short-term, lasting for just a few weeks or months. Or it can be chronic, lasting months or years. In rare cases, arthritis can last a lifetime. The most common form of juvenile arthritis is juvenile rheumatoid arthritis, affecting about 50,000 children in the United States.

Kids Health for Parents: Juvenile Rheumatoid Arthritis, 2005



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What does juvenile arthritis mean for the health of my child?


Arthritis is treatable, but there is currently no cure. Some children can experience cycles of flare-ups (problems start) and remissions (stops) of the condition. These cycles are not always the same. A flare-up is when the arthritis is at its worst, and with many symptoms. Remission is when the arthritis is not showing any signs and seems to be gone.

Ideally, children with arthritis should receive care from a pediatric rheumatologist, a specialist in diagnosing and managing arthritis. Treatment can include medication, physical therapy and exercise. Sometimes, injections (shots) of corticosteroids are required. Treatment works to:
  • Relieve the pain and inflammation (muscles gets swollen).
  • Slow down or prevent destruction of joints. Joints are where legs and arms bend or join the body such as the elbow, knee, wrist and hips.
  • Help children regain the use of joints so they can grow, run, play and live without pain.

Arthritis Foundation, 2005 & Kids Health for Parents: Juvenile Rheumatoid Arthritis, 2005


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What does juvenile arthritis mean for my child’s intelligence and learning?


Juvenile arthritis doesn't affect the brain, but can affect behavior and success in school. In school it may be hard for children to do such simple things as carrying a lunch tray, walk up stairs, or even to go to the bathroom. Sitting still for long periods often worsens the symptoms. These medical symptoms may make it difficult to pay attention in school. Learning disabilities aren't usually a problem in children with arthritis.

Children with juvenile arthritis may have emotional challenges and depression, especially when the condition is long-term. These children sometimes have trouble getting along with other children. Counseling or emotional support will be important.

Arthritis Foundation, 2005



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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 rheumatologist: A doctor who specializes in treating children with diseases of the musculoskeletal system like arthritis.

Pediatric orthopedic surgeon: A doctor who treats conditions and diseases of the bones, joints and muscles in children. They often treat juvenile arthritis.

Podiatrist: A doctor who treats conditions and diseases that affect the feet and ankles.

Physical therapist: A medical professional who helps manage pain and improve movement of joints by using exercise and therapy using heat, cold or water.

Occupational therapist: A medical professional who teaches easier ways to perform everyday activities that have become harder to do because of pain or mobility limitations. An occupational therapist may recommend assistive devices or joint protection techniques to help with daily activities.

Clinical pediatric psychologist: A professional who can help your child with the emotional challenges of having a long-term condition.

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.

Assistive technology specialist: A person who works with individuals with disabilities or illness to provide assistive technology solutions to help with problem areas. Assistive technology or assistive devices cover any tool that helps a person with a daily living task. Daily living means anything that relates to day-to-day life such as eating, speaking, getting around, working and playing. Learn more about what assistive technologies are available. Some services and assistive devices may be covered under Medicaid.


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What are some websites where I can learn more about arthritis?


Arthritis Foundation: http://www.arthritis.org/ This website has a special section on juvenile arthritis and features sections that lists products that are easy to use plus a helpful question-and-answer page. http://www.arthritis.org/conditions/DiseaseCenter/typesofJA.asp

KidsHealth for Parents:Juvenile Rheumatoid Arthritis http://kidshealth.org/parent/medical/arthritis/jra.html This page, written by a doctor, gives a comprehensive overview of JRA and also is linked to resources and related articles.

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

Medicine.net: http://www.medicinenet.com/arthritis/focus.htm Medicine.net is an online, health care media publishing company.

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.

PubMed: www.ncbi.nlm.nih.gov/entrez/query.fcgi A service of the National Library of Medicine with more than 15 million medical and research documents.

Healthline Rheumatoid Arthritis Center: www.healthline.com/health/rheumatoid-arthritis Healthline provides a very comprehensive overview of Rheumatoid Arthritis as a critical starting point for individuals and/or their loved ones.


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What are some books I can read with my child?


Kids Get Arthritis, Too Coloring Book by the Arthritis Foundation. This coloring book and story are based on Camp Diversity, a program designed to increase a child's understanding and acceptance of people with disabilities. For elementary age students. Order online at: http://www.arthritis.org/AFStore/singleproduct.asp?idproduct=3428&idcat=3&idsubcat=129

What special book can I give my child's teacher about juvenile arthritis?


When Your Student Has Arthritis by the Arthritis Foundation. This 28-page book for teachers gives an overview of arthritis, school activities checklist for students, education rights, and how teachers can help. Order online at: http://www.arthritis.org/AFStore/singleproduct.asp?idproduct=3371&idcat=8


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