Cure NF for Kaitlyn: May 2010

Monday, May 31, 2010

Meet Kaitlyn

Kaitlyn is a 7 year old fighting neurofibromatosis type 1. She was diagnosed with NF1 at six months of age. She was a full term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during first days, Kaitlyn was very fussy. It became clear that she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to genetics doctor because of a spot on her stomach. More and more spots started to appear as she got older. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had neurofibromatosis. A bone scan was done and revealed a lesion on the left side of skull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2010 she has 5 lesions inside the brain, one outside of skull, and one in left hip. So far they are not causing extreme problems. The lesions in her brain are pushing on particular nerves causing uncontrolled emotions, difficulty understanding, memory problems, etc. In the toddler years she would wake up in the middle of night screaming in terror. By this time she had a ENT, eye specialist, neurologist, and genetics specialist in addition to her pediatrician. The neurologist determined that she was having night terrors after seizures. This meant she was having seizures daily. She was then diagnosed with Epilepsy. The team of doctors work together to come up with the best treatments for her. The genetics specialist started seeing the patterns of things in Kaitlyn compared to her other NF patients. The spots (if you have 5 over 1/2 inch big, you most likely have NF...Kaitlyn has hundreds), freckling under arm pits, hair on lower back, stomach issues, learning disabilities, and posture issues in shoulders. Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learnign disabilities in children up to age 3. Now in school she has occupational therapy, physical therapy, speech therapy, and resource. She is only in the classroom with peers of the same age about 90 minutes a day. The members of her IEP team work together to get her the best education possible. She will always be behind in learning. She can learn, but it has to be done through repetition and a lot of extra time. She has to work harder then other kids of her age. As of 2010, she is about a year behind her peer in mental capabilities. She is a fighter and a trooper. Her entire life has been visiting doctors and therapist. She knows that her spots (Katy-bug spots) make her different then other people. Her spots are what make her special!

Why this blog was created...

This blog was created so that Kaitlyn's family and friends can keep up with her doctors and other events in her life. It was also created for those parents that have questions and are still at the frightening stage of learning about NF. When you first hear about your child having NF, it is so scary....all of the questions and concerns that go through a parents head is overwelming. I'm hoping this blog helps people understand more about NF. I write it in simple terms because it makes it easier to understand and explain. All of those formal terms and high tech words start to sound like another language. So I have simpified it so that kids and parents can relate to what is going on. My number one mission is to spread the awareness of neurofibromatosis to those families that have it and don't know it. I can't imagine learning about this when "it's too late".

Medical history

Kaitlyn was diagnosed with NF1 at six months of age. She was a full-term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during her first days, Kaitlyn was very fussy. It became clear she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to a genetics specialist because of a café au lait spot on her stomach. More and more “Katy-bug” spots started to appear as she got older, along with freckling under arms, hair on her lower back, posture issues etc. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had “deleted chromosome 17” neurofibromatosis type 1. We were told her life expectancy was 9 years and she wouldn’t be able to learn past the ranking of a few years old. A bone scan was done which revealed a lesion on the left side of her scull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2020, she has 5 lesions inside of brain, one outside her skull, one between skull and scalp, one in her hip, one on her lung, around her ribs and in her arms…that we know of. During the last couple of years, hundreds of neurofibromas have developed on the outside of her body causing difficulty and pain in joint areas. The lesions in her brain push on nerves and have caused uncontrolled emotions, difficulty understanding, memory problems, night terrors, seizures etc. Luckily, she appears to have outgrown her epilepsy. Her last seizure was May 2012. In April of 2015 she had a 6x9cm tumor removed from the back of her head between the scalp and the skull. It has since grown back but not as big as the original. The tumors in her arms cause pain while using hands. She also has an uncountable number of neurofibromas through the trunk of her body. These tumors cause debilitating pain. She is now a patient of an adult pain clinic in addition to ENT, eye specialist, neurosurgeon, neuropsychologist, and genetics specialist at University of Tennessee plus pediatrician and orthopedics doctors. She has recently discovered acupuncture is a big help to relieve some her daily pain.

Therapies and education

Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learning disabilities in children up to age 3. Through grade school to high school, she received special, physical therapy, occupational therapy and resource classes. Now in high school, she is in all special education classes focusing on job skills, self-care tasks, cooking and home chores. Her IEP team work together to give her the best education possible to prepare her for the world. She can learn but it needs to be done by repetition and extra time. She is approximately at the 4th grade level compared to typical peers. Part of the special needs diploma she is working towards allows her to intern at local businesses to learn hands on job skills. She is being trained to be a teacher’s assistant in the local middle school. Her dream job is helping others like her in the school setting. She earned an occupational diploma in spring 2021. She continues to attend high school to focus on her job skills in hopes of having a job when she ages out of school. Kaitlyn knows God made her different and does her best to enjoy every day to the fullest. She is very active in the special needs community…2 different cheer teams, dance team, baseball, self-defense class, multiple proms and many other special needs events provided by our hometown and local churches. She has out learned and out lived way pass the doctor’s expectations. We know every day with Kaitlyn is a blessing!

Cure NF for Kaitlyn!

Monday, May 31, 2010

Meet Kaitlyn