Southwest Pediatrics Medical Home newsletter

All children go through changes as they progress through adolescence into adulthood. For adolescents with special health care needs, these transitions can create anxiety and frustration for them and their families, too. These families also face the challenge of navigating ever-changing government, insurance and health care systems.

Once a patient turns 18, decision-making authority legally transfers to the young adult. Unless other legal arrangements are made, this also is the case for children with special health care needs who do not have the mental capacity to make informed choices for their personal care or finances.

The cost of health care is a growing concern for everyone, especially those who access care frequently. Insurance options to consider include:

• BadgerCare (available until age 19).
• Medical assistance through the Katie Beckett program (available until age 19).
• Medical assistance through Social Security.

The transition from pediatrician to adult health care providers can be a difficult change for everyone involved. The partnership that is formed between families and their pediatricians is an essential component of Medical Home that allows children to reach their highest potential. Transitions are a part of every child's life. CMG-Southwest Pediatrics will provide guidance for transitions that you and your child will experience in an ever-changing health care landscape.

Autism spectrum disorder is a common disability. Autism and Asperger's syndrome were first identified in the mid 1940s. In 2000, the Centers for Disease

Control and Prevention created the Autism and Developmental Disabilities Monitoring Network. The network estimated that autism was present in 6.6 per 1,000 8-year-olds.

Many factors appear to account for this increase. For example, the diagnosis of autism spectrum disorder now includes Asperger's syndrome and pervasive developmental disorder. Adding these two categories has increased the number of children classified as autistic.

Children with the diagnosis of autism became eligible to receive special education in 1990 with the passage of the Individuals with Disabilities Education Act. New students were more likely to be diagnosed with autism, and older students had previous diagnoses changed to autism. This phenomenon, known as "diagnostic substitution," adds to the number of children diagnosed with autism.

With increased media attention, parents and physicians are more aware of the symptoms of autism. As a result, more children are being appropriately identified with the disorder at an earlier age. All experts do agree on one thing: boys are much more likely to have autism than girls.

Talk to your pediatrician about autism. Since there are many treatment options, your pediatrician will be able to counsel and guide you in your decisions.

The Southeast Regional Center for Children and Youth with Special Health Care Needs serves families and providers who care for children and youth with special health care needs from birth to age 21. Examples of special health care needs include:

• Cerebral palsy.
• Cancer.
• Diabetes.
• Autism.
• Severe asthma.
• Developmental delay.
• Hearing loss.

The center serves families and providers in Jefferson, Kenosha, Milwaukee, Ozaukee, Racine, Walworth, Washington and Waukesha counties.

The center is staffed by parents of children with special health care needs. They talk with families to answer questions and provide information and assistance that is up-to-date and confidential. They suggest community, state and national resources related to:

• School issues.
• Financial assistance.
• Home care.
• Sibling support.
• Transition issues.
• Diagnoses.

The center also provides family support, including:

• Connections with other parents.
• Recommendations about a variety of support groups, newsletters, listservs and training opportunities.
• Links to local service coordination through local public health departments.
• Lists of community agencies that help coordinate activities associated with caring for a child with special needs.
• A resource library with books, audiotapes and videos about emotional support, specific diagnoses, special education and more.

All parents ask themselves this question. For parents who have a child with special needs the answer to this question may be more complex. As your child enters school for the first time it is natural to feel anxious, uncertain and overwhelmed. Many professionals may work with your child including:

• Special and regular education teachers.
• Specialists.
• Administrators.
• Aides.
• Support staff.

In addition, your child will interact with their peers with special needs. As overwhelming as this may seem at first, your child's education is a cooperative effort.

There are two important points to remember that will help make your child's educational journey more rewarding and successful. First, recognize that you know your child better than anyone. Your input is valuable in creating your child's educational plan and long-term goals.

Second, encourage your child to participate in the educational process and begin involvement as young as possible. It is vital that children with special needs learn to be advocates for themselves. An educational plan that starts out on the right foot is essential to help your child achieve success in life.

Asthma is a reactive airway disease. In asthma, the airway is highly sensitive to triggers such as:

• Dust.
• Animal dander.
• Mold and mildew.
• Pollens.
• Cold air.
• Cigarette smoke.
• Pesticides.
• Fumes from cars and buses.
• Perfumes.
• Strong chemicals.
• Other airborne triggers.

Asthma also can be triggered by exercise, a viral or bacterial infection, a change in the weather, high humidity or very dry air, allergies, food additives (such as MSG) and artificial food colors. Less commonly reported triggers are chlorine, fatigue and stress.

Families of children with asthma need an asthma action plan, which is a map for long-term treatment. The asthma action plan, developed in partnership with the pediatrician and/or pulmonologist, tells caregivers how to avoid triggers, how to use the rescue medications and maintenance medications, and when to contact the doctor or go to the emergency department.

Asthma is diagnosed through testing. The diagnosis also can be made when symptoms respond to medications or from signs and symptoms that repeat to verify the pattern of asthma.

The child's asthma is well controlled if the child:

• Lives an active, normal life.
• Has few troublesome symptoms.
• Attends school every day.
• Performs daily activities without difficulty.
• Has few urgent visits to the doctor, emergency department or hospital for asthma.
• Has few medication side effects.

Plaut, T.F. One Minute Asthma: What You Need to Know. Amherst, Mass: Pedipress, 2001.

The Centers for Disease Control and Prevention and the American Academy of Pediatrics recommend that all healthy children receive a booster dose of the chicken pox vaccine. Previously, most children received one dose at the age of 12 to 15 months. A second dose now is recommended for children ages 4 to 6 years and older.

CMG-Southwest Pediatrics schedules vaccine-only nurse visits on Wednesdays. If your child only needs to receive vaccines, call (262) 789-6020 to schedule a Wednesday appointment.

Parents should keep copies of their child's immunization records from birth to adulthood. You will be required to provide these records to daycares, schools (preschool to college), camp programs and some jobs. It is the parent's responsibility to complete any forms that require these dates.

CMG-Southwest Pediatrics no longer mails attention-deficit/hyperactivity disorder prescriptions from our office. All mail is sent from Children's Hospital and Health System. Call the office at least seven days before your child needs a refill. If you need your prescription sooner, you may pick it up from the clinic.

As part of our mission to make CMG-Southwest Pediatrics a Medical Home, we felt our growing number of children with attention-deficit/hyperactivity disorder was one area we needed to focus on.

Last year, a team of staff members at our clinic participated in a grant-funded research project to establish a system to monitor the use of stimulants in the treatment of children with ADHD.

We learned through the study that closer monitoring of children on medication and better collaboration between the family and care team resulted in more effective and timely adjustments of medications. Parents also were better educated about ADHD, medication dosing and timing, side effects and behavioral changes that can occur.

Parents surveyed agreed it was helpful to have a care coordinator working with them. They found questions and concerns were addressed in a more timely manner.

As a result of this study, our practice has continued to assign care coordinators to patients starting new ADHD medication. We encourage parents to call in with updates every two weeks until a stable dosage is reached. Follow-up visits are tracked consistently. Parents who call the office for stimulant medication refills now speak directly with a nurse to provide updated information about their child.

We will continue to improve this program to serve the needs of our patients and their families.

As parents, we plan for our children's futures. We all want the best for our children, including financial, emotional and physical stability. Although our legal responsibility ends when a child turns 18, it doesn't mean our love or concern ends.

For parents of special needs children, the concerns about the future are constant. The issues regarding ongoing care and management of the child become more complex. At age 18, parents of special needs children discover that they need to go through court guardianship to continue making financial and health care decisions for their children.

The most common mistake that results in loss of government benefits is when an inheritance is passed on to a child when the parents or grandparents pass away. Some families disinherit the child so the child is not at risk of losing benefits. This extreme is not necessary.

With proper estate planning, funds can be left in a special needs trust for the child. The trust itself will not count as an asset for the child and distributions from the trust should not cause a loss or reduction in government benefits. A special needs trust can hold all types of assets, including real estate. This may allow a special needs child to continue to receive care in his or her home rather than having to move to a care facility. A special needs trust can provide for the costs of activities that may enhance the child's life and enhance the medical care provided by government benefits programs.

Planning is critical. With proper planning, parents of special needs children can maximize the benefit of any funds they leave for their child. They also can maximize the benefits available through state and federal government programs.

Tomorrow is the eve of my son's Individualized Education Program meeting. Unlike other years, I am calm. This year, I trust that Vic's interests will be well served.

I can't tell if it is a devoted teacher who has good instincts for meeting my son's needs or an atmosphere where playing is learning, or if it is my son himself who contributes so much of his own energy and brightness to his environment. Most likely it is a combination of all of the above.

Today when I took care of my 3-year-old grandchild, I saw that she is ahead of Vic in many ways. In the past, I would grieve over this realization, but not today.

Today I am grateful.

Vic now is 13. He receives recognition at Tae Kwon Do with red stars sewn onto his dobok (uniform). He is very self-centered in the way that a small child is, and his true joy is giving and receiving sloppy kisses and hugs.

I appreciate that he has a niche in this otherwise complex world. The complicated world seems to slow down a little for him so that he can participate.

I am lucky to have him as my son. He is doing well and the world is a rich place for him.

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