Self-management

Coping and support

Caring for a child with a chronic condition such as neurofibromatosis can be a challenge. It may help to keep in mind that many children with neurofibromatosis grow up to live healthy lives with few, if any, complications.

To help you cope:

  • Find a primary care doctor you can trust and who can coordinate your child's care with other specialists. The Children's Tumor Foundation has an online tool to help you find a neurofibromatosis specialist in your area.
  • Join a support group for parents who care for children with neurofibromatosis, ADHD, special needs or chronic illnesses in general.
  • Accept help for daily needs such as cooking, cleaning, caring for your other children or simply giving you a needed break.
  • Seek academic support for children with learning disabilities.
Dec. 24, 2015
References
  1. Ferri FF. Neurofibromatosis. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. https://www.clinicalkey.com. Accessed Nov. 11, 2015.
  2. Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm. Accessed Nov. 11, 2015.
  3. Korf BR. Neurofibromatosis type 1 (NF1): Pathogenesis, clinical features, and diagnosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  4. Evans DG. Neurofibromatosis type 2. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  5. Yohay K, et al. Schwannomatosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  6. Korf BR. Neurofibromatosis type 1 (NF1): Management and prognosis. http://www.uptodate.com/home. Accessed Nov. 10, 2015.
  7. Woodrow C, et al. Neurofibromatosis. Orthopaedics and Trauma. 2015;29:206.
  8. Goldblum JR, et al., eds. Benign tumors of peripheral nerves. In: Enzinger and Weiss's Soft Tissue Tumors. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2014. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
  9. AskMayoExpert. Neurofibromatoses. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2015.
  10. Slattery WH. Neurofibromatosis type 2. Otolaryngologic Clinics of North America. 2015;48:443.
  11. Hirbe AC, et al. Neurofibromatosis type 1: A multidisciplinary approach to care. The Lancet Neurology. 2014;13:834.
  12. Flint PW, et al., eds. Stereotactic radiation treatment of benign tumors of the cranial base. In: Cummings Otolaryngology. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 20154. https://www.clinicalkey.com. Accessed Nov. 10, 2015.
  13. Riggin EA. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Sept. 18, 2015.