Neurofibromatosis Tips

When it comes to Neurofibromatosis, we've been there, done that, now serving 8 tips in 4 categories ranging from Learning Disabilities to Treatments.

What can I do for my body so it can be healthy during chemotherapy treatment for NF?

Healthy Tip When Undergoing Chemotherapy And Radiation Treatment For Neurofibromatosis

If you have been diagnosed with neurofibromatosis, then you will undergo genetic screenings and MRIs to periodically check for the growth of tumors. Your neurosurgeon may determine that you should undergo chemotherapy and radiation as noninvasive treatments to reduce the size of tumors when located in certain parts of the body. Undergoing such treatments can take a toll on the body, so follow these simple tips to stay healthy.

Eat A Healthy Diet

Always ask your doctor concerning nutrition so that you doctor can prescribe the right diet for your particular body weight and health. It's ideal that you maintain your weight during treatment, so you should eat a moderate amount of fruits, vegetables, grains, meats, and low fat dairy products. Cut back on alcohol, sugar and salt.

Eat Even If You Don't Feel Like It

Chemotherapy and radiation treatment can affect your appetite severely. Make sure that you eat meals every day prescribed by your doctor. If you are still struggling, eat a high protein and high calorie diet so that you do not lose too much weight.

   
Could my Neurofibromatosis actually be Schwannomatosis?

Determine If The Pain You Experience is Schwannomatosis

Daily, new diseases and medical conditions are identified and classified in the medical world. There is a new form of neurofibromatosis (NF), a genetic neurological condition that causes tumors to grow on nervous system, that has been classified as schwannomatosis. Unlike NF, schwannomatosis does not develop vestibular or meningioma tumors, or hearing problems in people. Instead, tumors called schwannomas develop on spinal or peripheral nerves that causes pain anywhere in the body. Look for these signs to determine if you have schwannomatosis so that you can undergo the necessary genetic testing.

If a person in your family history has had unexplained pain in the body but no hearing loss or learning disabilities.

You experience significant pain that is disabling, has experienced numbness, balance problems and weakness in the body.

Talk with your doctor immediately for MRI testing to determine if you have multiple schwannomas causing the pain.

   
What determines that my child has neurofibromatosis type 2?

Know The Signs That Your Child Has Neurofibromatosis Type 2

While your child may have been diagnosed with neurofibromatosis type 1 (NF1) at birth or an early age where tumors can develop on your child's nervous system, your child may show signs of having NF2 when reaching the age of 10 or older. While attending periodic doctor's visits and undergoing genetic screenings will help spot the growth of tumors, you should notice certain signs that your child has NF2.

Ear problems

Your older child may experience ringing in the ears (referred to as tinnitus), mild or severe hearing loss and even deafness.

Numbness and Headaches

Don't ignore your child if they complain of chronic headaches or numbness of the facial area. This could be a sign of NF2.

Balance Problems

If your child suddenly has problems with their balance or feels dizzy, seek medical help immediately. Also take note if it looks as if your child's muscles are wasting away (atrophy).

   
What type of neurofibromatosis does my child have?

Look For Indications That Your Child Has Neurofibromatosis Type 1

As a genetic neurological disorder that affects children from birth, neurofibromatosis can come in certain stages based on the age of your child. The most common type is neurofibromatosis type 1, or NF1. Your child will show certain physical signs that they may have NF1, such as:

Head Circumference

Your child may have a larger head circumference than normal, almost like a baby doll appearance with a large head attached to a smaller body.

Cafe-au-lait Spots

Another sign of NF1 are a large number of birthmarks over your child's body, except for the face. Referred to as cafe-au-lait spots, if your child has four or more that are larger than a dime, it's possible your child has NF1.

Abnormal spine, tibia or skull

The spine, skull bone, or tibia will abnormally grow as the bones enlarge. If your child shows a severe curve in the spine, this is called scoliosis.

   
What can I do to make my child comfortable about undergoing surgery for tumors caused by Neurofibromatosis?

Dealing With Neurofibromatosis: How To Get Your Child Through Surgery

If your child has been diagnosed with Neurofibromatosis, or NF, they will undergo the early screening to detect tumors that could place pressure on nerves and affect organs. If your neurosurgeon has determined that your child needs to undergo surgery to remove tumors, you can make the experience less stressful for your child by following these simple tips:

1. Calmly explain to your child what is happening, the procedure, and that you will be there.

2. Read available information about the surgery to your child and how it will help them.

3. Have the doctor talk about the anesthesia.

4. Arrive early at the appointment, so your child is comfortable.

5. Bring your child's favorite toy, book or blanket to comfort them.

   
Are there other symptoms associated with Neurofibromatosis?

Other Symptoms to Look for if Your Child Has Neurofibromatosis

Neurofibromatosis (NF) is a genetic condition that affects children into their adulthood. As an incurable disease, it can cause tumors to develop in the nervous system. Most children will show common symptoms of the brownish-colored spots on their skin and freckles under the armpits. You should also recognize other symptoms of NF whether your child is diagnosed with NF1 or NF2.

Other Symptoms For NF1

Seizures can affect children diagnosed with NF1. They may also experience speech impairment, high blood pressure, scoliosis, and a delay of puberty.

Other Symptoms For NF2

Unsteadiness is another symptom of NF2. You should also keep an eye out if you child has facial pain, headaches, or experience weakness in the body.

   
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Heidi Splete