VNS - What Pam W. Has To Say ...

Last Update: 28 December, 1998

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21 May, 1998

Our 16 year old son had the VNS implanted mid April of this year. Still at basic setting of 30sec/5 minutes, but has had the intensity raised once May 11. He has had drop seizures (amongmany other types) since age 6. So far we are guardedly optimistic. General cognitive abilityis improving, he is speaking more clearly and in complete sentences without being prompted.Still having about 1 seizure a day, but some days with none and they are more of a jerk than adrop. He is in a wheelchair for safety (because he falls suddenly and often face forward) andwe will need to see no seizures for some time to call it a cure.

28 December, 1998

Our son, Ray, had the VNS surgery in April, 1998. He was 16 at thattime, and had been having uncontrolled drop seizures since he was 6years old (unknown cause, but doctors tell us it is Lennox-Gastatsyndrome). He has been on multiple medicines most of the time. Heexperienced some pain from the incision and some nausea from theanesthesia; however, he has an extremely high pain threshold.

Ray is retarded, but is verbal. We noticed that he was much moretalkative than he had been before the implant. He noticed things aroundhim and remarked upon them, rather than just responding to otherpeople's conversation. He is reading at about two grades higher thanbefore, and can read cursive handwriting. (He is now living in aninstitutional group setting, and does receive extra school help, butthis looks more like better thinking abilities rather than just theresult of more practice.) We think it may be controlling seizures thatwe couldn't see but that were interfering with thinking and talkingabilities.

Seizures themselves repeat the pattern we have seen for so many years --slight improvement, but no real control. He is using a wheelchair forsafety and receiving physical therapy to keep muscle strength. Theimplant has been adjusted several times, and is now at an experimentalsetting (on for 7 seconds, off for 27 seconds, all the time) since theend of November. So far it's the same thing; what looks like areduction but still having seizures.