Kaitlyn C. - Quilt Finished in 2008

Born: July 1, 1996

Illness: Pseudutumor Cebri, Traumatic Brain Injury, Seizure Disorder

Kaitlyn's Story

Written by Kaitlyn's mom in January 2008

My daughter was a normal 10 year old until her accident on July 26th, 2007.  She was out riding her bicycle with some friends and flipped over the handle bars on her bike.  My husband and I were at home and it was getting really late so I went out to call her in and found her wandering around without her bike.  She came inside and had no idea where she was and didn’t remember what happened.  In the mean time the parents of her friends called and told me she had fallen off her bike and was knocked out.  We immediately called 911 and they took her to the hospital.  She had a huge bump on the back of her head and was complaining her head really hurt. 

They did a CAT Scan and told us she had a few bleeds in her brain, one in the right temporal lobe which controls your short term memory.  They transferred her to the PICU at the University of Chicago Comer’s Children’s hospital.  We spent 5 days in the intensive care unit and another week on the floor.  Kaitlyn has suffered many set backs from this accident, seizures, headaches and vision problems.  But on a more positive note this accident helped us to uncover another problem.  The intracranial pressure in Kaitlyn’s head has been increased since her accident and they have been removing the excess fluid to help stabilize her.  After 4 LP’s (lumbar punctures) and a pressure of over 60 they diagnosed her with pseudotumor cebri.  The normal pressure should be 0 or less.  Pseudo tumor is an increase in pressure around the brain. 

We have been through several tests and a lot of different solutions to find something that will work for my daughter.  We have exhausted all the drugs that could possibly help her with no real relief.  They tell it is time to discuss surgery, not something we wanted to think about.  First, they want to remove her tonsils.  She went for a sleep study and the results showed she does not get enough deep sleep.  What does this

have to do with her condition?  Well, you body produces CSF constantly when you are awake but does not produce any when you are in a deep sleep.  So that means that Kaitlyn is producing extra CSF that is causing her increase in pressure around her brain.  If they take her tonsils out, maybe she will get more deep sleep and produce less CSF making her pseudotumor a little better.  Doctors tell me not to hold my breath, it is a shot in the dark and will probably not help much.  We need to try all options so that is next.  We had two more Lp with elevated pressured in November and January,  We finally got an LP shunt placed on January 11th, 2008.  She had developed meningitis and is also suffering from seizures.