Guest guest Posted January 5, 2003 Report Share Posted January 5, 2003 Hi... Just thought I'd add my input to this thought. My son, Sev, had the VNS implant in March of 2002. It was turned on in the hospital and upped each 6 weeks for the next few months. He cycles 7 seconds on, 12 seconds off all day and has from the start. I have to say that though Sev still has seizures....some of you may remember what an intractable little guy he is...they are much more controlled now. He still seizes everyday, but diastat usage is down 95% (previously at least once a week for a seizure greater than 5 mintues) and 911 calls have been completely emlimated! We used to have to call the ambulance at least once a month for an uncontrolled seizure. So while not a complete success...he still has between 5 and 20 seizures a day....they are usually less than a minute and he gets over them quickly. We even FINALLLLLLLY have him med free...no more of the pheno for a month now! Hope everyone is doing well...I miss this group! I'll try to pop back in more often. Nan and Sevi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 ... >>>>Does your son have to wear a wrist band of some device to keep on him at all times (the magnet)? Yes...Sev wears a magnet...its on a velcro band we keep on his ankle. Sev is 3 1/2 and is severely delayed...we use the magnet, not him. It doesn't hurt not to use the magnet. It's like a bonus...If you catch it early enough, you can use the magnet and it might help, but it's not necessary since the vns goes on and off all the time. >>Also, did your son experience alot of pain right after the surgery? Yes...he ended up in the hospital for two nights due to a combination of pain and not handling the anesthesia well. He cried a lot those first days and his heart rate kept going up really high. Once home though, the pain was completely gone...we didn't even have to use the pain pills they prescribed. >>Does his voice sound funny often? His voice does have a little quiver when the device is going off...he's non vocal, so it just changes the quality of his chatter. It's really endearing. >>>How is his quality of life with the VNS? I'd say MUCH improved! We'd gone through 12 meds with yucky side effects and mostly just increasing seizures. The diet worked better than the meds and I am still a HUGE advocate of the diet. It just gave out on us and we couldn't get any control back after the first year. SEv's seizures are far less severe and greatly reduced in duration and we've gottne him to the med free point. I really wanted to see this since Sev had been on meds since birth practically. He has really blossomed this month off the pheno. He's much more interactive and expressive. He's very social and loving and flirty...I swear this week he's flirting even across the room! Hope I've answered your questions. In a nut shell, I'd say, yes it is invasive. The pain and anesthesia were a big deal for me and my concerns turned out to be well merited. Even so, I'd not even begin to second guess my decision....it's been worth it. I have to say though that I am glad I went the diet route first since it was non evasive and I learned so much about nutrition and about Sev while doing the diet. If you have more questions, just ask...nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2003 Report Share Posted January 8, 2003 For what it's worth, my two cents on my daughters VNS: It's worked wonderfully. Not 100% by any means as it's certainly no cure. But it cut her seizures down by about 60% and the ones that she has are much more controlled. When she gets an aura she doesn't always have the alterness to use the magnet to swipe over the device. But the few times we've caught her in time or she's been able to get it, they seem to really help. Either the seizure is kept at bay or its a very brief controlled one with no post ikals. We tried the diet a few years ago but it didn't have much effect plus it made her awfully sick. Since then we went back on meds and got the VNS about a year ago. Now we've gone from four meds to two and the doctor is suggesting it be cut down to one. We're thrilled. Less AEDs = less side effects. > Hi... > > Just thought I'd add my input to this thought. My son, Sev, had the > VNS implant in March of 2002. It was turned on in the hospital and > upped each 6 weeks for the next few months. He cycles 7 seconds on, > 12 seconds off all day and has from the start. I have to say that > though Sev still has seizures....some of you may remember what an > intractable little guy he is...they are much more controlled now. He > still seizes everyday, but diastat usage is down 95% (previously at > least once a week for a seizure greater than 5 mintues) and 911 calls > have been completely emlimated! We used to have to call the > ambulance at least once a month for an uncontrolled seizure. So > while not a complete success...he still has between 5 and 20 seizures > a day....they are usually less than a minute and he gets over them > quickly. We even FINALLLLLLLY have him med free...no more of the > pheno for a month now! Hope everyone is doing well...I miss this > group! I'll try to pop back in more often. Nan and Sevi Quote Link to comment Share on other sites More sharing options...
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