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Mom Confessions Mom Confessions

I have brain tumors caused by Nerofibromatosis and am raising 5 kids...ask me anything Photos of me and DS added/

Posted by on Oct. 4, 2012 at 4:56 PM
  • 133 Replies
1 mom liked this

-shrugs- I see tons of asks me so why not LOL


this is my son and I both of us have Nerofirbomatosis AKA NF


Here is one on a bad day at a wedding with my DH


by on Oct. 4, 2012 at 4:56 PM
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gypsy_rose
by Kandy on Oct. 4, 2012 at 5:02 PM

Definition

By Mayo Clinic staff

Neurofibromatosis is a genetic disorder that disrupts cell growth in your nervous system, causing tumors to form on nerve tissue. These tumors can occur anywhere in the nervous system, including in your brain, spinal cord, and large and small nerves. Neurofibromatosis is typically diagnosed in childhood or early adulthood.

The tumors are usually noncancerous (benign) and the disorder is usually mild. But effects of neurofibromatosis can range from hearing loss and learning impairment to cardiovascular complications and, in a few cases, cancer.

Neurofibromatosis treatment aims to maximize healthy growth and development and to manage complications as soon as they arise. In cases in which neurofibromatosis causes large tumors or tumors that are pressing on a nerve, surgery may help ease symptoms.

Symptoms

By Mayo Clinic staff

Three distinct types of neurofibromatosis exist, each with different signs and symptoms.

Neurofibromatosis 1 (NF1)
NF1 typically appears in childhood. Signs and symptoms include:

  • Flat, light-brown spots on the skin. These harmless spots, also called cafe au lait (ka-FAY oh LAY) spots, are common in many people. But if you have more than six of them, it's a strong indication of NF1. With NF1, cafe au lait spots usually are present at birth or appear during the first year of life. Their number tends to increase during early childhood and then stabilize. They aren't serious but can sometimes be a cosmetic concern.
  • Freckling in the armpits or groin area. This sign usually appears by 4 to 5 years of age.
  • Soft bumps on or under the skin (neurofibromas). These are benign tumors that grow on nerve tissue close to your skin. Sometimes, a growth will involve multiple nerves (plexiform neurofibroma).
  • Tiny bumps on the iris of your eye (Lisch nodules). It's hard to see these harmless lesions just by looking at them, but your doctor can detect them with a special instrument.
  • Bone deformities. Abnormalities in the way bones grow and a deficiency in bone mineral density can cause bone deformities such as a curved spine (scoliosis) or bowed lower leg.
  • Learning disabilities. Impaired intelligence (cognition) is common in children with NF1, but is usually mild. Most children are in the average or low-average range. Often, children with NF1 have a specific learning disability, such as problems with visual-spatial skills or attention-deficit/hyperactivity disorder (ADHD).
  • Larger than average head size. Children with NF1 tend to have a larger brain volume, but it's unknown whether this is related to cognitive impairment.
  • Short stature. Short stature is another characteristic occasionally seen in children with NF1.

Neurofibromatosis 2 (NF2)
NF2 is much less common than NF1. Signs and symptoms of NF2 usually result from the development of vestibular schwannomas (also known as acoustic neuromas) in both ears. These benign tumors grow on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve). Resulting signs and symptoms typically appear in the late teen and early adult years, and include:

  • Gradual hearing loss
  • Ringing in the ears
  • Poor balance

In some cases, NF2 can lead to growths in other nerves of the body, including the cranial, spinal, visual (optic) and peripheral nerves. Associated signs and symptoms may include:

  • Cataracts
  • Numbness and weakness in the arms or legs

Schwannomatosis
Schwannomatosis is a rare form of neurofibromatosis only recently recognized. It mostly seems to affect people in their 20s and 30s. Schwannomatosis causes tumors called schwannomas to develop on cranial, spinal and peripheral nerves, but not on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve), so it doesn't cause hearing loss, making it different from NF2. As with NF2, though, schwannomatosis doesn't cause cognitive impairment. The main symptom of schwannomatosis is:

  • Chronic pain, which can occur anywhere in the body

When to see a doctor
If you notice signs or symptoms of neurofibromatosis in your child or yourself, call your doctor for an appointment or bring it up at your next visit. The tumors associated with neurofibromatosis are almost always benign and slow growing. So although it's important to obtain a timely diagnosis and monitor for complications, the situation isn't an emergency.

DamiensMommy1
by on Oct. 4, 2012 at 5:03 PM
do you have any of the bad side effects of having it?
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daughteroftruth
by on Oct. 4, 2012 at 5:08 PM
Do you take any medications?
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gypsy_rose
by Kandy on Oct. 4, 2012 at 5:08 PM

I have brain tumors, learning difficulties, my head is larger, I am in pain all the time, I have constant migranes, I have CRS from the brain tumors, and a few other issues. I do have the spots and freckiling. I passed it down to my youngest before I knew I had it. I just found out in January I have it. 

Quoting DamiensMommy1:

do you have any of the bad side effects of having it?


gypsy_rose
by Kandy on Oct. 4, 2012 at 5:09 PM

Just stuff for migraine's and lots of vitamins. 

Quoting daughteroftruth:

Do you take any medications?


Peytons_Mama09
by Bronze Member on Oct. 4, 2012 at 5:13 PM
What made you go get tested. I have MANY MANY if the birthmarks. I tend to get headaches a lot. I also have the freckling. Never been tested for a LD but I don't do math very well (difficult for me to under stand)

My dd also has the spots and freckling. Don't notice anything else with her yet tho as she's only 3.
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gypsy_rose
by Kandy on Oct. 4, 2012 at 5:15 PM

I looked up cafe au lait spots when my son started to get them and found out if you have 6 or more you likely have the disorder. (I have 15) DNA confermed I had it. :( 

Quoting Peytons_Mama09:

What made you go get tested. I have MANY MANY if the birthmarks. I tend to get headaches a lot. I also have the freckling. Never been tested for a LD but I don't do math very well (difficult for me to under stand)

My dd also has the spots and freckling. Don't notice anything else with her yet tho as she's only 3.


gypsy_rose
by Kandy on Oct. 4, 2012 at 5:18 PM

do yours look like this?

Quoting Peytons_Mama09:

What made you go get tested. I have MANY MANY if the birthmarks. I tend to get headaches a lot. I also have the freckling. Never been tested for a LD but I don't do math very well (difficult for me to under stand)

My dd also has the spots and freckling. Don't notice anything else with her yet tho as she's only 3.


DamiensMommy1
by on Oct. 4, 2012 at 5:19 PM
I'm sorry.. that must be rough

Quoting gypsy_rose:

I have brain tumors, learning difficulties, my head is larger, I am in pain all the time, I have constant migranes, I have CRS from the brain tumors, and a few other issues. I do have the spots and freckiling. I passed it down to my youngest before I knew I had it. I just found out in January I have it. 


Quoting DamiensMommy1:

do you have any of the bad side effects of having it?


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Anonymous
by Anonymous on Oct. 4, 2012 at 5:20 PM
1 mom liked this
Did you know about them before you had your kids?
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