My daughter

Hello.....ok, where to begin!  My daughter is 13 years old, her name is Caylan.  When she was 5 years old her first ever (that we knew about anyway) seizure was Status.  I went into her room one morning to get her up for Kindergarten and she was in a seizure.  Of course, I had no idea it was a seizure...I thought she was dying.  I did not know how long she had been like that, unconscience, eyes rolled back, foaming at the mouth, body still but twisted, and loss of bladder control.  We called paramedics who rushed her to Children's Hospital in Dallas.  She had another seizure in the ambulance and a third as they were wheeling her into the ER.  She was knocked out on Ativan and they ran every test possible to determine the cause.  At one point they even thought she had had a stroke.  Long story short (somewhat), she was diagnosed with a brain tumor in the left parietal area.  She had surgery and they removed most of the tumor.  She was not able to have chemo or radiation due to her age and the location and the technology at that time.  The residual tumor itself has remained stable.  But the side effects of the tumor have been a living nightmare at times!  She has epilepsy, migraines, stomach problems, ADD and depression, to name a few.

Fast forward a few years:  Her seizures seemed to be under control for several years.  We thought she only had the "bigger" seizure when they would breakthrough usually after a dose was missed.  Looking back, after being more educated about the types of seizure, we know that she was having "smaller" seizure all along.  Her "big" ones involved loss of conscienceness, eyes rolling back, body twitches, and sleeping 6-12 hours after.  The "small" ones involved staring, being unable to talk, and being very confused from any where from 30 seconds to a few minutes.  She was on Tegretol and then changed to Carbatrol...but I don't remember the reason for the change.  We also switched Neurologists during that time back to the original doc who had diagnosed the tumor.

Fast Forward to the last couple of years:  I told her neuro that I felt she was having these smaller seizures and was kind of given the brush off at first.  For about a year I would mention them but they weren't pursued.  Finally, after I persisted that she was having them and that they were becoming more frequent and involving her school AND had been witnessed by teachers and even her Gastro doc he decided to do the inpatient EEG monitoring.  We were there last October for 5 days....and of course, NO SEIZURES AT ALL!  He told me he wasn't convinced that what we were seeing were true seizures, but maybe daydreaming or attention getting tactics to get out of school.  I understood his concern because I had wondered the same thing MANY times.  Well over the next few months the seizures were getting more frequent, happening daily, and becoming more "involved".  They were lasting longer and I was seeing some droopiness in her lips and her eyes would try to roll but she somehow would fight through.  He put her back in for the monitoring in July and this time we captured 3 seizures, 2 in one day!  FINALLY, we had our proof and he was 100% convinced.   

Present:  She is now taking 1800mg of Trileptal and it helps some.  She is back to having the staring seizures....but they are still daily and Caylan says they "feel" bigger.  The higher dose also makes her feel pretty crappy but at the lower dosage the seizures were lasting too long and were more involved.  We have an appointment next Friday with the neurosurgeons at Children's to discuss surgery as the best option for her.  They want to do the intracranial  monitoring next. 

That's our story in the shortest form possible.  The surgery idea scares me to death.  She has already had brain surgery once and I hate the idea of touching it again, but she is miserable and her quality of life gets worse each year as they seizures are getting worse.  She has let us know that she wants the chance for a more normal life despite the risks.  She wants to look forward to driving a car someday and living independently.  We have to listen to her, too, as we move forward and make these hard decisions.

I came here looking for support, friendship and hopefully, find people who have "been there done that" that are willing to share their stories and information with us.  Thank You! Rhona