How to Care for a Child With Neurofibromatosis

Affecting the development of nerve cells, Neurofibromatosis (NFT) can be an emotionally devastating disease as it results in body deformity, eye conditions and skin problems. A child with Neurofibromatosis will need special care and considerations depending upon the severity of their disease.

Instructions

Difficulty: Moderately Challenging

1. Determine which form of Neurofibromatosis your child has. NF1 is the most common and affects a many as 100,000- American citizens. NF2 affects less than half that many people. (See Resources)
2. Get genetic counseling for children with Neurofibromatosis, since the odds of passing it on to their children is as great as 50%. While half of all NFT cases have a genetic cause, the other half results from a malformation at conception.
3. Manage tumors caused by NFT by surgical removal if they are creating pressure, causing pain or extending into other body organs. In addition, tumors that disfigure the face or body are often removable.
4. Monitor your child’s physical growth along with his mental development. Regular height and weight measurements will determine growth and learning tests will show mental acuity. In addition, other physical exams, such as vision and hearing are in order.
5. Treat tumors that are not easily removable with radiation therapy. Because these tumors grow along the spinal cord and brain, their removal is sometimes risky.
6. Help your child accept his disease and don’t let it stop him from having a full and happy childhood.
7. Control seizures in children with medication. High blood pressure may also be present and controlled by prescription medication from your doctor.
8. Watch for any new growths or hearing and vision problems and notify your doctor immediately. The best chance of providing your child with a normal life comes with vigilance and early intervention when new growths appear.

Tips & Warnings

• Consult your child’s doctor immediately if he shows symptoms of NFT or if he has been previously diagnosed with the disease and is showing new symptoms.