21 Dec., 1998
I just wanted to let you know how the VNS has helped my daughter.My daughter, Kristyann is 11 years old and is mentally handicapped. Shehas had seizures since she was 6 months old. She has Lennox Gastau typeseizures. She has been on about 10 different medications with no orlimited success. She actually went an entire year seizure free, but wasso heavily medicated that her quality of life was zero. She slept 20hours a day and the other 4 hours of the day were splintered into 15 to30 minutes periods of wakefullness. She has never been a candidate forbrain surgery.
Just prior to having the VNS implanted she was taking 3 medications totry to stop her seizures. She was taking Gabitril, Topamax and Lamictal.She was averaging 20-30 seizures a day, that I saw. I don't know howmany I missed during the day since she goes to school all day. Herseizures consisted of her eyes blinking and marked head lag. She doesn'tloose concionsness, just control of her movement. She has also had 2grand mal seizures, both of which she didn't breath through!
She had the VNS implanted on the 18th of November and it was turned onon the 30th. Her doctor and I decided to wean her off of the Gabitrilafter the implant was activated. She has been turned on now for a monthand is off the Gabitril completely and the implant is at .50mA. Shehasn't had a single seizure in two weeks. Her teachers and I have beenwatching her like a hawk! She has terrible sinus and ear infections thistime of year and they usually cause her to seize more frequently. Sofar, none, and she currently has both an ear and sinus infection!
I can't say enough good about the VNS. I realize that at any time herstatus could change, but it sure is nice to have my daughter returned tome! It has taken 11 years, but I finally have her in spirit and body!She is now much more alert, awake and willing to participate inactivities, including school! She has never been able to produce speech,and she lost all the sign language she had aquired before her stroke(during heart surgery). She is now picking up sign language again and istrying to communicate with us. What a change! I couldn't be moreexcited. Her doctors are now planning to wean her off the Topamax, veryslowly, as they increase the stimulator's dosage. They said that thestimulator's "theraputic" level would most likely be 2.50mA, but if shecontinues to do well and can be weaned off of most of her meds, she maynot have to go that high. We'll see.
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