Cure NF for Kaitlyn: Update on Kaitlyn's head.

Wednesday, March 4, 2015

Update on Kaitlyn's head.

I have a pray request for Kaitlyn ....The day after Krop for Kaitlyn last year we noticed a "mushy" area on the back of her head. We had her at the ER Labonhuer then doctor visits and mri etc. It is a cluster of tumors made of skin cells between her skull and her scalp. We were told to just watch for changes and go back in 3 months. Well, last week she started getting head aches and the tumors are getting firmer. I took Kaitlyn to Semmes Murphy yesterday. There is a good chan...ce they will have to remove the tumor in the back of her head. It is "huge" (quoting the doctor). They are setting us up to meet with a plastic surgeon; hopefully next week. The doctor said that "it is a major undertaking". If the plastic surgeon agrees with these 2 surgeons at Semmes Murphy, they will coordinate a team to take the tumor out. The reconstruction of the back of the skull and skin will be the big issue. I will let you know more as I learn more. Kaitlyn is nervous about her head and knows the tumor may have to come out, however she does not know what all is involved. Until we know for sure what they are going to do, I don't want to scare her with the details.
I sent Kaitlyn's genetic specialist an email about yesterday. This is what she sent back......
Keep me updated but I think they are right , remember the skull felt funny where the tumor is so we do not want that it erodes the bone more. The metal plate to replace the bone is common with babies who has craniosynostosis (sutures stuck together) so they used to do this procedure. I know this is not small deal but at least it I is not inside her brain.
We are just supposed to keep track of headaches and keep doing what we are doing until we talk to the plastic surgeon.
We are pretty scared but know we are in good hands. We are strong believers in prayer and know that the strength we get from them will guide us through this terrifying time.

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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!