Information for Children and Parents Affected by Scleroderma
Pediatric education is really about the whole family. The child who has scleroderma, their parents, and their siblings. Grandparents, aunts, and uncles are often also involved. The National Scleroderma Foundation works to address all levels of education.
Do I need to inform my child’s school of her/his localized scleroderma?
Localized scleroderma is not contagious, and the disease alone should have no impact on your child’s ability to learn. However, many children may need adjustments at school to attend doctor’s appointments, infusions, lab monitoring and to have accommodations in place for a successful education. Most children with localized scleroderma are successful in completing school and participate in sports and other activities, attend college, find a job, and form a family as much as their peers.
Some children with LS can have complications relating to joint movement or disability that could impact a student’s ability to type or write, get to class on time, participate in physical education classes, and a host of other issues.
Children who take immunosuppressants or other systemic treatment may experience side effects that could impact attendance records or fatigue levels.
While sharing these complications is up to the parent or guardian, the 504 plan provides a measure of protection for the child for successful schooling.
What is a 504 plan, and who might need one?
The 504 plan refers to Section 504 of the Rehabilitation Act and the Americans With Disabilities Act. This specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary, or post-secondary schooling. A 504 plan is a document that ensures your child will have access to all the support he or she needs at school for a successful education.
Many parents have described this as a “lifesaver.” Since it begins with a letter from your child’s pediatric rheumatologist or healthcare provider, it adds weight to your communications. It can be very difficult to explain a complex disease and its impact on your child. The 504 can help.
For example, if a child had pain or movement problems in his leg, then he might need support to get to class on time. Another child with localized scleroderma in her dominant hand might have some trouble holding a pencil or typing for an extended period of time. 504 plans can also be useful as a communication tool to convey the reasons why a child with localized scleroderma may have absences for medical treatments or their side effects.
504 plans are confidential and have no impact on grades or class placement. They are unrelated to academic achievement and must be reviewed on an annual basis.
If your child will be absent over an extended period of time, then he or she is likely eligible for homebound or online school options. However, the majority of children with localized scleroderma can attend school and participate in the extra-curricular activities and sports like other children
Tips for children and parents on transitioning to adult care:
The American Academy of Pediatrics recommends that the process of transition should begin at age 14, with a focus on developing self-management skills in the teenage years. With appropriate education, teenagers and young adults can develop the skills needed for successful transfer to adult care and become self-advocates for their health needs. Additional resources for successful transition to adult care are available on https://www.gottransition.org/
Transition to adult care is a process and not a discrete event that occurs at a fixed age in every child. Teens should learn about their disease and why they need their medications.
Encourage your child to take an active role in his or her care, including making their own appointments and getting refills on their medications.
Many pediatric rheumatologists continue to follow young adults up to age 22 or through the college years.
Transition typically occurs when the disease is in remission. This ensures a smooth transfer to an adult provider. However, this practice varies by geographic location and availability of pediatric rheumatologists. (Ref SF handout and ACR provider directory
Accommodations can also be helpful at the college level and are typically handled by the Office of Disabilities. Some examples of college accommodations include priority scheduling, housing options to minimize risk of infection, attendance flexibility for medical appointments, and allowing late arrival and extra travel time between classes on campus.
General guidelines and preventive care:
Children and adolescents with localized scleroderma should receive routine pediatric care. Age-appropriate vaccines can be given (like injectable influenza, HPV, meningococcal vaccines), with the exception of live vaccines (MMR, varicella and intranasal influenza vaccine) which are not recommended to be given to those on immunosuppressive medications. The rheumatologist can provide a letter for exemption from live vaccines for school attendance.
Children and adolescents with localized scleroderma are normal children, so they should go to school and participate in play and physical activities regularly. A healthy lifestyle is important for helping to support normal growth and development, and will also help keep your immune system in a more normal state.
An ‘autoimmune’ or any other special diet is NOT recommended in children. Children are not adults and require all essential building blocks to develop and grow in a healthy manner, including carbohydrates, proteins, dairy, fruits and vegetables, in reasonable recommended AAP portions. As in any child, it is recommended to avoid processed foods and foods high in sugar and salt.
Exercise is an important component of a healthy lifestyle. Exercise helps children develop strong muscles and bones, coordination, healthy hearts and manage their sleep. The American Academy of Pediatrics recommends that children 6 to 18 years old aim to have 60 minutes of moderate to vigorous activity per day, which can be spread out through the day. Children 3 to 5 years of age should average 15 minutes of physical activity per hour while they are awake. Refer to an American Academy of Pediatrics article, “New report guides physical activity counseling in pediatric clinical settings.”
Sleep is another key component of a healthy lifestyle. Good sleep improves your mood, energy, and mental function. Sleep is also important for ensuring good growth as your body makes growth hormone while you are sleeping. Your immune system also functions better when you have good sleep habits.
Reproductive health has recently become a topic of discussion in patients with localized scleroderma. Methotrexate and mycophenolate are teratogenic medications, which means that they can result in physical or functional defects in the developing fetus if the mother is on these medications during pregnancy. Hence two reliable forms of birth control are recommended for female patients of reproductive age who are sexually active, with a preference for long-acting contraceptives. It is important to note that these medications do not affect fertility and that pregnancy is safe after these medications have been weaned off for at least three months.
No two scleroderma journeys are the same, but there are common experiences along the way. No matter where you, your child, or a loved one are in your journey, or the type of scleroderma, the National Scleroderma Foundation can help you find your best path.