Caring for a Child with Neurofibromatosis

October 17, 2022
Janelle Thomas MSN, RN
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Finding out your child has a rare condition can be a very difficult experience. Even if you are told that symptoms are typically mild, as is often the case with a condition like neurofibromatosis, it’s still normal to have questions and uncertainty about what the future holds. As a parent or family member, you want the best for your little one, and it’s natural to want to make preparations to ensure the highest level of care.

This helpful overview provides basic information about this condition and shares practical steps anyone can take when caring for a child with neurofibromatosis. We hope you can use this guide to make confident care decisions that help your child and family achieve the best possible quality of life.

What is Neurofibromatosis?

Neurofibromatosis is a rare genetic condition that causes tumors to grow on nerve tissues. While the mildest cases usually do not cause serious symptoms, and the growths are typically non cancerous, some cases do require more serious treatment.

There are three primary types of neurofibromatosis, with the first type, neurofibromatosis 1 (NF1), being the most common and the form that affects most children. Neurofibromatosis 2 (NF2) and Schwannomatosis, the other two forms, are less common and typically affect older patients.

With NF1, symptoms are usually detected at birth and can include brownish spots on the skin, called cafe-au-lait spots due to the color, and bumps under the skin. More serious cases can also cause learning disabilities, bone deformities, and delayed or diminished growth.

Treatment can range from simple monitoring of spots and symptoms to the need for medication and surgery in more complicated cases. Since there is no cure for neurofibromatosis, a large part of treatment, especially in children, involves therapy to address physical and sometimes emotional challenges that come with the condition. Because of this, understanding how to meet these care needs is one of the most important ways to ensure a positive outcome.

4 Tips for Caring for a Child with Neurofibromatosis

A comprehensive care plan for a child with neurofibromatosis should include the following:

1. Schedule regular checkups and attend followup appointments

While many cases are mild or even nonsymptomatic, neurofibromatosis can be a progressive condition. Regular checkups with a pediatrician or specialist can help identify any early complications and take appropriate treatment measures as early as possible.

2. Identify and address developmental issues

Children with neurofibromatosis can be at a higher risk of developmental problems, including delayed and inhibited growth and learning disabilities. To minimize these issues and ensure the best possible growth and development for your child, committing to any recommended counseling and therapy can be highly beneficial.

3. Enable emotional support

As children dealing with neurofibromatosis get older, there can be emotional distress that comes with the challenges this condition brings. Building a loving and supportive home for your child, combined with outside counseling in some cases can help to ensure emotional well-being.

4. Ensure a healthy and balanced lifestyle

From good nutrition to regular exercise to making sure your little one has the time and space to be a kid, an active and balanced childhood can go a long way toward successfully managing neurofibromatosis. Talk to your doctor or other members of your care team about how to create a healthy diet for their needs and what recreational activities are safe and can help with your child’s healthy development.

Benefits of Pediatric Home Care for Neurofibromatosis

Every family dealing with neurofibromatosis has unique treatment pathways and care needs. For many who are caring for a child with neurofibromatosis it can be challenging to balance a busy schedule and the ongoing needs of life with meeting the high level of care and attention your child deserves.

Pediatric home health services exist to help families meet a wide range of care needs for conditions that include neurofibromatosis. From assisting with nutritional needs, providing safe supervision for respite care, to helping with care during rehabilitation, a caring and dedicated pediatric home health professional can help families and children living with neurofibromatosis meet treatment goals. Depending on individual treatment plans, home health aides can also accompany patients to follow up appointments and therapy sessions. The right pediatric home care provider can feel like an extension of your family, helping to improve quality of life for everyone.

Contact Care Options for Kids For Pediatric Home Health Care

It can be hard to balance your time between work, home, and caring for a child. That’s why our team of skilled professionals at Care Options for Kids is here to help.

Our home health care services offer support in the comfort of your home. We refer loving and competent nurses to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you are considering pediatric home health care services, contact the caring staff at Care Options for Kids. Call today at (888) 592-5855.