Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Patti, It is very sweet of you to offer to send me the video. I'll first try to get one from here and if I fail, I'd really appreciate your offer. I will let you know, thanks again. How is Katera doing? Is she still on the SCD or back on the KGD? I haven't been following the list carefully. We had the initial tests for VNS last month and hope to get it installed without too long a wait. I don't know whether Cyberonics sends reps. to potential users here. Good luck with the VNS for Katera. Saro Patti wrote: > Saro..... If you can't find a copy of the VNS video anywhere else, I > will send you mine. It's not terribly helpful..... beyond just being > an introduction to VNS, and hearing testimony from a number of happy > VNS patients and a couple of parents of VNS kids. Let me know if you > want it...... I'd be happy to bundle it up and mail it over. I know > that would probably take several weeks to get it to you but just > thought I would offer. I don't mind at all. > > We've decided to go for it on the VNS. I have someone from Cyberonics > coming to meet with me tomorrow to answer a few questions..... but > none of my questions are ones that would affect our decision so we've > set the wheels in motion for getting on the surgeon's schedule. > > Patti, Katera's mom > Philip Lowe > > > Dear Philip, > > It is great to hear of your success with the VNS, and congratulations > on getting a provisional driving licence. I suppose a couple of years > ago nobody guessed you'd get this far. It gives all of us hope. > When Rohan asked me (about 10 years ago) when he'd be able to > drive, I thought probably never. However I hadn't the heart to say so > so I said wait till your legs are long enough. > > We are waiting to see the surgical team in June. Are there any > particular > questions that we should ask them? Do you know how we could get hold > of a VNS video before that? Rohan is rather apprehensive, even though > he wants things to move quickly. In the meantime we are going to see > St.Piers(Surrey) which is a school/college for young people with > epilepsy. > He would have to stay there during the week and come home for the > weekends. We hope it'd make him a bit more independant. > > Good luck with your driving test. > > Saro > > > Philip Lowe wrote: > > > Dear Saro, > > > > No doubt you've heard my story/history before, regarding 40 yrs of > > AEDs for treating my epilepsy, and you may be aware that I took the > > plunge for the VNS back in Oct. 2001, I would whole-heartedly > > recommend you beg, steal or borrow whatever information you can on > > the stimulator, if you feel the diet hasn't been as successful as it > > might have been for Rohan. I'm not suggesting for a minute that the > > VNS is a panacea, for some patients it won't have any great > > benefit, however there's another proportion that do have a > modest or > > substantial benefit from it. > > I guess I fell into the latter category. > > > > Since Nov. 2002 I have been seizure free and with a little help from > > tinkering with my diet, mainly Atkins based, have eliminated my > > auras too. After a lot of support from the medical team and The > Queen > > Eliz. Hosp. in Birmingham, UK and my local doctor I applied for and > > received a provisional driving licence. Obviously the medical > > review panel or my medical team didn't see my AED's, Tegretol > > Retard, Clobazam, Sodium Valproate & Lamotrigine, as any hazard > either. > > > > So although this group is specifically based for the Ketogenic Diet, > > I'm just wishing to convey to parents that there can be light at the > > tunnel even though the diet might not be as successful as was > first hoped. > > > > My next hurdle is attempting to pass my driving test now, I promise > > I'll forewarn you drivers in the UK that there's another hazard on UK > > roads if I pass, > > > > Best wishes, > > > > Phil > > > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Patti, It is very sweet of you to offer to send me the video. I'll first try to get one from here and if I fail, I'd really appreciate your offer. I will let you know, thanks again. How is Katera doing? Is she still on the SCD or back on the KGD? I haven't been following the list carefully. We had the initial tests for VNS last month and hope to get it installed without too long a wait. I don't know whether Cyberonics sends reps. to potential users here. Good luck with the VNS for Katera. Saro Patti wrote: > Saro..... If you can't find a copy of the VNS video anywhere else, I > will send you mine. It's not terribly helpful..... beyond just being > an introduction to VNS, and hearing testimony from a number of happy > VNS patients and a couple of parents of VNS kids. Let me know if you > want it...... I'd be happy to bundle it up and mail it over. I know > that would probably take several weeks to get it to you but just > thought I would offer. I don't mind at all. > > We've decided to go for it on the VNS. I have someone from Cyberonics > coming to meet with me tomorrow to answer a few questions..... but > none of my questions are ones that would affect our decision so we've > set the wheels in motion for getting on the surgeon's schedule. > > Patti, Katera's mom > Philip Lowe > > > Dear Philip, > > It is great to hear of your success with the VNS, and congratulations > on getting a provisional driving licence. I suppose a couple of years > ago nobody guessed you'd get this far. It gives all of us hope. > When Rohan asked me (about 10 years ago) when he'd be able to > drive, I thought probably never. However I hadn't the heart to say so > so I said wait till your legs are long enough. > > We are waiting to see the surgical team in June. Are there any > particular > questions that we should ask them? Do you know how we could get hold > of a VNS video before that? Rohan is rather apprehensive, even though > he wants things to move quickly. In the meantime we are going to see > St.Piers(Surrey) which is a school/college for young people with > epilepsy. > He would have to stay there during the week and come home for the > weekends. We hope it'd make him a bit more independant. > > Good luck with your driving test. > > Saro > > > Philip Lowe wrote: > > > Dear Saro, > > > > No doubt you've heard my story/history before, regarding 40 yrs of > > AEDs for treating my epilepsy, and you may be aware that I took the > > plunge for the VNS back in Oct. 2001, I would whole-heartedly > > recommend you beg, steal or borrow whatever information you can on > > the stimulator, if you feel the diet hasn't been as successful as it > > might have been for Rohan. I'm not suggesting for a minute that the > > VNS is a panacea, for some patients it won't have any great > > benefit, however there's another proportion that do have a > modest or > > substantial benefit from it. > > I guess I fell into the latter category. > > > > Since Nov. 2002 I have been seizure free and with a little help from > > tinkering with my diet, mainly Atkins based, have eliminated my > > auras too. After a lot of support from the medical team and The > Queen > > Eliz. Hosp. in Birmingham, UK and my local doctor I applied for and > > received a provisional driving licence. Obviously the medical > > review panel or my medical team didn't see my AED's, Tegretol > > Retard, Clobazam, Sodium Valproate & Lamotrigine, as any hazard > either. > > > > So although this group is specifically based for the Ketogenic Diet, > > I'm just wishing to convey to parents that there can be light at the > > tunnel even though the diet might not be as successful as was > first hoped. > > > > My next hurdle is attempting to pass my driving test now, I promise > > I'll forewarn you drivers in the UK that there's another hazard on UK > > roads if I pass, > > > > Best wishes, > > > > Phil > > > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Patti, It is very sweet of you to offer to send me the video. I'll first try to get one from here and if I fail, I'd really appreciate your offer. I will let you know, thanks again. How is Katera doing? Is she still on the SCD or back on the KGD? I haven't been following the list carefully. We had the initial tests for VNS last month and hope to get it installed without too long a wait. I don't know whether Cyberonics sends reps. to potential users here. Good luck with the VNS for Katera. Saro Patti wrote: > Saro..... If you can't find a copy of the VNS video anywhere else, I > will send you mine. It's not terribly helpful..... beyond just being > an introduction to VNS, and hearing testimony from a number of happy > VNS patients and a couple of parents of VNS kids. Let me know if you > want it...... I'd be happy to bundle it up and mail it over. I know > that would probably take several weeks to get it to you but just > thought I would offer. I don't mind at all. > > We've decided to go for it on the VNS. I have someone from Cyberonics > coming to meet with me tomorrow to answer a few questions..... but > none of my questions are ones that would affect our decision so we've > set the wheels in motion for getting on the surgeon's schedule. > > Patti, Katera's mom > Philip Lowe > > > Dear Philip, > > It is great to hear of your success with the VNS, and congratulations > on getting a provisional driving licence. I suppose a couple of years > ago nobody guessed you'd get this far. It gives all of us hope. > When Rohan asked me (about 10 years ago) when he'd be able to > drive, I thought probably never. However I hadn't the heart to say so > so I said wait till your legs are long enough. > > We are waiting to see the surgical team in June. Are there any > particular > questions that we should ask them? Do you know how we could get hold > of a VNS video before that? Rohan is rather apprehensive, even though > he wants things to move quickly. In the meantime we are going to see > St.Piers(Surrey) which is a school/college for young people with > epilepsy. > He would have to stay there during the week and come home for the > weekends. We hope it'd make him a bit more independant. > > Good luck with your driving test. > > Saro > > > Philip Lowe wrote: > > > Dear Saro, > > > > No doubt you've heard my story/history before, regarding 40 yrs of > > AEDs for treating my epilepsy, and you may be aware that I took the > > plunge for the VNS back in Oct. 2001, I would whole-heartedly > > recommend you beg, steal or borrow whatever information you can on > > the stimulator, if you feel the diet hasn't been as successful as it > > might have been for Rohan. I'm not suggesting for a minute that the > > VNS is a panacea, for some patients it won't have any great > > benefit, however there's another proportion that do have a > modest or > > substantial benefit from it. > > I guess I fell into the latter category. > > > > Since Nov. 2002 I have been seizure free and with a little help from > > tinkering with my diet, mainly Atkins based, have eliminated my > > auras too. After a lot of support from the medical team and The > Queen > > Eliz. Hosp. in Birmingham, UK and my local doctor I applied for and > > received a provisional driving licence. Obviously the medical > > review panel or my medical team didn't see my AED's, Tegretol > > Retard, Clobazam, Sodium Valproate & Lamotrigine, as any hazard > either. > > > > So although this group is specifically based for the Ketogenic Diet, > > I'm just wishing to convey to parents that there can be light at the > > tunnel even though the diet might not be as successful as was > first hoped. > > > > My next hurdle is attempting to pass my driving test now, I promise > > I'll forewarn you drivers in the UK that there's another hazard on UK > > roads if I pass, > > > > Best wishes, > > > > Phil > > > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Saro... Katera is still SCD legal for the most part.... but I am steering her toward more of an Atkins/Keto direction at the moment. I am SO reluctant to go back to weighing meals! We were just beginning to make some progress with self-feeding and if we go back to pure Keto, I'll have to make sure every speck of food goes " down the hatch " ... as you know. The breakthrough seizures we saw in our last 8 or 9 months on Keto were more frequent than what we're seeing now..... but were at least milder and shorter. She has had only about 7 seizures in the past year (on SCD)..... but they've been more intense, longer and harder to stop, requiring Diastat every time..... sometimes Ativan plus Diastat. Seems like the drugs are losing their effectiveness so we're really hoping VNS will make it possible for her to go to school this fall, (we've been homeschooling until now) as a second grader with lots of special ed support, of course. You and I will have to stay in close touch as we go through this VNS process. I hope and pray it will be helpful to both of our kids. I'll hold your hand if you'll hold mine! Feel free to e-mail me privately... durovchic@... Patti Re: Re: VNS video/ Patti Hi Patti, It is very sweet of you to offer to send me the video. I'll first try to get one from here and if I fail, I'd really appreciate your offer. I will let you know, thanks again. How is Katera doing? Is she still on the SCD or back on the KGD? I haven't been following the list carefully. We had the initial tests for VNS last month and hope to get it installed without too long a wait. I don't know whether Cyberonics sends reps. to potential users here. Good luck with the VNS for Katera. Saro Quote Link to comment Share on other sites More sharing options...
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