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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.
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:
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.
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.
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.
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.
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).