Posted by Donovan and Patty
on June 04, 2000 at 16:56:40:
Our daughter, Brenna, is currently 19 months old. She has had seizures since one month of age. The
seizures started off very mild when they were first noticed and were difficult to catch at times. They consisted
of slight jerking movements in her legs. Upon mentioning this to our pediatrician, we were assured that this is
sometimes normal. The jerking movements soon started to incorperate not just Brenna's legs but her arms as well.
This was hapening approx. ten times a day.
It wasn't long before we made an appointment at Childrens Mercy with a neurologist. Brenna was given an EEG,
CT scan and an MRI all normal. A second EEG showed right focal spikes. The neurologist prescribed Tegretol.
This didn't control the seizures but they were now less frequent. Less frequent but more intense. Brenna went
from slight jerking movements to full body contractions. The seizures also only occurred during times of sleep.
At age three months, we noticed significant developmental delays. However, with the continuation of seizures
plus meds we couldn't expect too much from her. At seven months of age the developmental delays were very
obvious. Even though Brenna continued to have an occasional seizure the Tegretol was discontinued in an
attempt to give Brenna a chance to "wake up". A phisical and occupational therapist from Children's Therapy
Center started working with Brenna.
At eleven months of age we took Brenna to UCLA for a second opinion. There a video telemetry was conducted
to rule out infantile spasms. Topamax was prescribed. For the first time, Brenna was seizure free. She started
making headway developmentally but it was very slow going. Now at nineteen months
Brenna has started having seizures again. The seizures are pretty intense and only occur when she falls asleep.
Once again Brenna has lost some interest in her surroundings and is on edge frequently. It seems as though her body
has just stopped responding to the Topramax despite the numerous dosage incrases. We have just started
Brenna on Depakote. It's only been two days since the med change so it's effectiveness has yet to be determined.
We are hoping for the best.
If you have any words of wisdom or suggestions we would love to hear from you.