Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Patti, Yep - still here - You read my mind actually ,was thinking about you guys last night and was gonna send you a direct this week - but you beat me to it Can't believe it is nearly a yr since Katera started the SCD!!! So - keppra may be a goodie for her then - despite the irritability? Have you tried supplementing with um - forgotten what it was.. (vit B?) that was discussed on here a while ago as recommended with keppra? Or was that for behavioural issues fullstop, more then irritability..a bit foggy sorry Glad things are in a good way there anyway, and um 20 pounds? Green with envy reading that. One day... Don't know where you were up to with , but - hellish 2 mth hospital stay Nov/Dec, 5 weeks convulsive status, infusions, induced coma etc unsuccessful, nearly lost him Cold turkied off his benzo med (diaz) when suspicion raised that my whinging about an intolerance to this class of med may have brought about the status crisis excacerbated by sky high ketones after adding carnitine (carn stopped as soon as admitted to hosp) into his mix again. The midazolam infusion they tried in PICU is what tipped him into the full blown status, so he is now noted in all his records as 'hypersensitive' to this class of med, bye bye benzos..Cold turkeying him after 3 and a half yrs was v dangerous but they felt they had no option at that point. Anyways - happyish ending, discharged on NYs Eve, last seizure seen (day or night) was Dec 24 th. Er, why - we don't exactly know. Coincided with his depakote dose being halved (5 days afterwards). This had been put up to a whopping 2000 mgs when the coma was unsuccessful, that alone nearly killed him - it was horrible, his convulsive component increased like 10 fold Putting it down to 1000 mgs still saw a heap of nasties. Lynette Sadleir (ped epi) flew up from Wellington to consult - halved the depakote to 500 mgs and started rapidly incremented topomax - experimentally used in this fashion a few time overseas to break status. The seizures eased on day 2, but no-one is that sure it was theraputic enough (only 50 mgs) to have been involved in the seizure reduction, so we'll never know. Kept increasing over the next 3 days till it got to 150 mgs, but he had been seizure free except for a few sleep ones so we stopped there at a lowish dose and crossed fingers, and that is where we are at now...He also had a course of ACTH in late Nov, this too may have eventually kicked in. And of course - this also coincided with a mth after getting rid of the b***** benzos - maybe having these poisons finally gone has allowed the diet to work again... Never say never, always another curveball waiting round the corner, but being seizure free now for about 7 weeks, after that upheaval, with an EEG to double check 3 weeks ago being perfectly normal, has got everyone involved in his case pretty gobsmacked, er including me PS - posted a pic of D in the coma in the photos section, also one taken his first night home from hospital playing Dr to Hollywood actor , and then one taken a few weeks ago - where the 'benzo look' has finally gone.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Patti, Yep - still here - You read my mind actually ,was thinking about you guys last night and was gonna send you a direct this week - but you beat me to it Can't believe it is nearly a yr since Katera started the SCD!!! So - keppra may be a goodie for her then - despite the irritability? Have you tried supplementing with um - forgotten what it was.. (vit B?) that was discussed on here a while ago as recommended with keppra? Or was that for behavioural issues fullstop, more then irritability..a bit foggy sorry Glad things are in a good way there anyway, and um 20 pounds? Green with envy reading that. One day... Don't know where you were up to with , but - hellish 2 mth hospital stay Nov/Dec, 5 weeks convulsive status, infusions, induced coma etc unsuccessful, nearly lost him Cold turkied off his benzo med (diaz) when suspicion raised that my whinging about an intolerance to this class of med may have brought about the status crisis excacerbated by sky high ketones after adding carnitine (carn stopped as soon as admitted to hosp) into his mix again. The midazolam infusion they tried in PICU is what tipped him into the full blown status, so he is now noted in all his records as 'hypersensitive' to this class of med, bye bye benzos..Cold turkeying him after 3 and a half yrs was v dangerous but they felt they had no option at that point. Anyways - happyish ending, discharged on NYs Eve, last seizure seen (day or night) was Dec 24 th. Er, why - we don't exactly know. Coincided with his depakote dose being halved (5 days afterwards). This had been put up to a whopping 2000 mgs when the coma was unsuccessful, that alone nearly killed him - it was horrible, his convulsive component increased like 10 fold Putting it down to 1000 mgs still saw a heap of nasties. Lynette Sadleir (ped epi) flew up from Wellington to consult - halved the depakote to 500 mgs and started rapidly incremented topomax - experimentally used in this fashion a few time overseas to break status. The seizures eased on day 2, but no-one is that sure it was theraputic enough (only 50 mgs) to have been involved in the seizure reduction, so we'll never know. Kept increasing over the next 3 days till it got to 150 mgs, but he had been seizure free except for a few sleep ones so we stopped there at a lowish dose and crossed fingers, and that is where we are at now...He also had a course of ACTH in late Nov, this too may have eventually kicked in. And of course - this also coincided with a mth after getting rid of the b***** benzos - maybe having these poisons finally gone has allowed the diet to work again... Never say never, always another curveball waiting round the corner, but being seizure free now for about 7 weeks, after that upheaval, with an EEG to double check 3 weeks ago being perfectly normal, has got everyone involved in his case pretty gobsmacked, er including me PS - posted a pic of D in the coma in the photos section, also one taken his first night home from hospital playing Dr to Hollywood actor , and then one taken a few weeks ago - where the 'benzo look' has finally gone.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi Patti, Glad to hear of your good fortune (a lot of hard work behind it, though, huh?) Hope it continues! Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi Patti, Glad to hear of your good fortune (a lot of hard work behind it, though, huh?) Hope it continues! Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hello Patti, Of course I remember you! I'm glad to hear from you, but sorry about the news you bring. I was hoping Katera had graduated from anything to do with seizures and diets. I understand your frustrations...we are at a similar place with Macie. She has recently been diagnosed with Doose syndrome (from our new neuro and epi center). You can read some of my recent posts to catch up with her journey if you want to. To share our experience with zonegran....she was slightly improved seizure wise and we saw no big side effects. She eventually had zarontin added, then keppra....then we switched to the diet and the meds were history after a while. I think you should at least take solace in the fact that her big seizures have been with illness (not much comfort, I know...but promising nonetheless). Maybe they will stay that way. My youngest, Maggie, has had two febriles (one very nasty) and they aren't treating them with anything. I ordered the " Vicious Cycle " book and got it today. I'm anxious to dig into it. We've decided to give Macie a break from keto if we can do it without all you-know-what breaking loose. We are adding Lamictal ever so slowly. I want to concentrate on getting her healthy and in balance if we do go keto-free, so hopefully if we end up going back to it we'll see better success. Best wishes to Katera! Glenna > Hello to everyone who remembers us.... and to those who don't. > > I've decided to hang out here with all of you for a while, since we are back in the land of seizures and AEDs. Katera was on the Keto diet from October 2000 until January of 2003. Our first Keto year was very good...... only one seizure at the six month mark. Then after we passed one full year, we started seeing more creeping back until we saw an average of 2 to 3 per month...... usually partials, sometimes longer and more generalized. I felt I had given Keto my all and was seriously burned out...... Katera was always exceedingly ketotic, even at low ratios....... so in the last several months of the diet, we were only at a 2:1 ratio, but had 160+ ketones all the time. I took a breather from January '03 for a few months.... and she was no worse off the diet..... though I'll admit, we stayed " sort of " low- carb.... just wasn't weighing food and not giving so much fat. Then in April, we had a doozy of a seizure and right about the same time, another parent here told me about the Specific Carbohydrate Diet, which is a diet for gastro intestinal disorders..... but she said that some were seeing improvement in seizures and other neuro conditions. I quickly read up and decided to give it a go. Katera immediately went 10 weeks seizure free...... had one seizure.... then went 5 MONTHS seizure free on SCD. I was thrilled...... especially since the diet is sooooo much easier than the Keto diet. Then in November of '03, with a viral illness, we saw several big seizures...... decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? > > Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, seizures from early infancy, global delays, speech and motor dyspraxia, tethered cord syndrome, yadda, yadda, yadda) former Keto Kid turned SCD kid... in Washington state. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hello Patti, Of course I remember you! I'm glad to hear from you, but sorry about the news you bring. I was hoping Katera had graduated from anything to do with seizures and diets. I understand your frustrations...we are at a similar place with Macie. She has recently been diagnosed with Doose syndrome (from our new neuro and epi center). You can read some of my recent posts to catch up with her journey if you want to. To share our experience with zonegran....she was slightly improved seizure wise and we saw no big side effects. She eventually had zarontin added, then keppra....then we switched to the diet and the meds were history after a while. I think you should at least take solace in the fact that her big seizures have been with illness (not much comfort, I know...but promising nonetheless). Maybe they will stay that way. My youngest, Maggie, has had two febriles (one very nasty) and they aren't treating them with anything. I ordered the " Vicious Cycle " book and got it today. I'm anxious to dig into it. We've decided to give Macie a break from keto if we can do it without all you-know-what breaking loose. We are adding Lamictal ever so slowly. I want to concentrate on getting her healthy and in balance if we do go keto-free, so hopefully if we end up going back to it we'll see better success. Best wishes to Katera! Glenna > Hello to everyone who remembers us.... and to those who don't. > > I've decided to hang out here with all of you for a while, since we are back in the land of seizures and AEDs. Katera was on the Keto diet from October 2000 until January of 2003. Our first Keto year was very good...... only one seizure at the six month mark. Then after we passed one full year, we started seeing more creeping back until we saw an average of 2 to 3 per month...... usually partials, sometimes longer and more generalized. I felt I had given Keto my all and was seriously burned out...... Katera was always exceedingly ketotic, even at low ratios....... so in the last several months of the diet, we were only at a 2:1 ratio, but had 160+ ketones all the time. I took a breather from January '03 for a few months.... and she was no worse off the diet..... though I'll admit, we stayed " sort of " low- carb.... just wasn't weighing food and not giving so much fat. Then in April, we had a doozy of a seizure and right about the same time, another parent here told me about the Specific Carbohydrate Diet, which is a diet for gastro intestinal disorders..... but she said that some were seeing improvement in seizures and other neuro conditions. I quickly read up and decided to give it a go. Katera immediately went 10 weeks seizure free...... had one seizure.... then went 5 MONTHS seizure free on SCD. I was thrilled...... especially since the diet is sooooo much easier than the Keto diet. Then in November of '03, with a viral illness, we saw several big seizures...... decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? > > Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, seizures from early infancy, global delays, speech and motor dyspraxia, tethered cord syndrome, yadda, yadda, yadda) former Keto Kid turned SCD kid... in Washington state. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hello Patti, Of course I remember you! I'm glad to hear from you, but sorry about the news you bring. I was hoping Katera had graduated from anything to do with seizures and diets. I understand your frustrations...we are at a similar place with Macie. She has recently been diagnosed with Doose syndrome (from our new neuro and epi center). You can read some of my recent posts to catch up with her journey if you want to. To share our experience with zonegran....she was slightly improved seizure wise and we saw no big side effects. She eventually had zarontin added, then keppra....then we switched to the diet and the meds were history after a while. I think you should at least take solace in the fact that her big seizures have been with illness (not much comfort, I know...but promising nonetheless). Maybe they will stay that way. My youngest, Maggie, has had two febriles (one very nasty) and they aren't treating them with anything. I ordered the " Vicious Cycle " book and got it today. I'm anxious to dig into it. We've decided to give Macie a break from keto if we can do it without all you-know-what breaking loose. We are adding Lamictal ever so slowly. I want to concentrate on getting her healthy and in balance if we do go keto-free, so hopefully if we end up going back to it we'll see better success. Best wishes to Katera! Glenna > Hello to everyone who remembers us.... and to those who don't. > > I've decided to hang out here with all of you for a while, since we are back in the land of seizures and AEDs. Katera was on the Keto diet from October 2000 until January of 2003. Our first Keto year was very good...... only one seizure at the six month mark. Then after we passed one full year, we started seeing more creeping back until we saw an average of 2 to 3 per month...... usually partials, sometimes longer and more generalized. I felt I had given Keto my all and was seriously burned out...... Katera was always exceedingly ketotic, even at low ratios....... so in the last several months of the diet, we were only at a 2:1 ratio, but had 160+ ketones all the time. I took a breather from January '03 for a few months.... and she was no worse off the diet..... though I'll admit, we stayed " sort of " low- carb.... just wasn't weighing food and not giving so much fat. Then in April, we had a doozy of a seizure and right about the same time, another parent here told me about the Specific Carbohydrate Diet, which is a diet for gastro intestinal disorders..... but she said that some were seeing improvement in seizures and other neuro conditions. I quickly read up and decided to give it a go. Katera immediately went 10 weeks seizure free...... had one seizure.... then went 5 MONTHS seizure free on SCD. I was thrilled...... especially since the diet is sooooo much easier than the Keto diet. Then in November of '03, with a viral illness, we saw several big seizures...... decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? > > Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, seizures from early infancy, global delays, speech and motor dyspraxia, tethered cord syndrome, yadda, yadda, yadda) former Keto Kid turned SCD kid... in Washington state. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hey you - welcome back Below in ***s... ----- Original Message ----- >Then in November of '03, with a viral illness, we saw several big seizures...... **Were you checking her glucose during that period? I know she would have had no ketones by then, just curious to know if her glucose went high high.... >decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... **Yikes - they want her back on back to 2 AEDs again? Bet your thrilled with that idea - not They are thinking the 2 in combination might be a goodie, or with the aim of weaning the keppra whilst introducing the zonegran? Are either of those specifically 'designed' for tonic clonics? >and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. **Sorry Patti, not been there done that. Either keppra or zonegran actually - neither are readily available down here. >I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. **Any result back yet? So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? **Well yes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hey you - welcome back Below in ***s... ----- Original Message ----- >Then in November of '03, with a viral illness, we saw several big seizures...... **Were you checking her glucose during that period? I know she would have had no ketones by then, just curious to know if her glucose went high high.... >decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... **Yikes - they want her back on back to 2 AEDs again? Bet your thrilled with that idea - not They are thinking the 2 in combination might be a goodie, or with the aim of weaning the keppra whilst introducing the zonegran? Are either of those specifically 'designed' for tonic clonics? >and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. **Sorry Patti, not been there done that. Either keppra or zonegran actually - neither are readily available down here. >I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. **Any result back yet? So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? **Well yes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hey you - welcome back Below in ***s... ----- Original Message ----- >Then in November of '03, with a viral illness, we saw several big seizures...... **Were you checking her glucose during that period? I know she would have had no ketones by then, just curious to know if her glucose went high high.... >decided to stay on SCD but added an AED on December 20th (for the first time in four years), Keppra. I'm not thrilled by Keppra so far...... because she is pretty irritable..... and we have seen one seizure since starting it, just three weeks ago, again with illness/fever. It was a humdinger of a tonic-clonic, which dashed my hopes of a miracle drug in Keppra. Now, the neuro seems to want to add Zonegran to the mix...... **Yikes - they want her back on back to 2 AEDs again? Bet your thrilled with that idea - not They are thinking the 2 in combination might be a goodie, or with the aim of weaning the keppra whilst introducing the zonegran? Are either of those specifically 'designed' for tonic clonics? >and I've just gone and read up enough online tonight in the past ten minutes to make me absolutely sure she will never take this drug. If anyone else has any experience with it, please chime in. I doubt very much that we will try it. **Sorry Patti, not been there done that. Either keppra or zonegran actually - neither are readily available down here. >I think I would sooner go back to the Keto diet..... keeping within the guidelines of SCD, too. We had a recent brain MRI.... just something the neuro wanted since there hadn't been one in over 5 years and Katera has some other physical/ortho issues that are worsening and he wanted to rule out any changes in her brain. **Any result back yet? So.... that brings you up to speed. I've temporarily signed off the SCD list, since I can't juggle both lists.... too much mail! I may not be able to keep up with this one very well but thought I'd check in and visit with you all for a while. Did you know this is the greatest group of parents on the internet?? **Well yes.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hi Patti, Welcome back, but I wish you didn't have to .....you know what I mean! As Glenna said I do hope the recent sz. Katera had were due to the illnesses. Rohan is off the diet and on Keppra too. I'm afraid it has stopped working and we are left with side effects, like being tired all the time and being sensitive to touch etc. The good news is that he will be investigated for the VNS in April. I'm not getting my hopes up too much, but it's something positive to try. Hope Katera has the same sz-free state again. You could always try the KGD again if necessary. Saro > > > > " 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 March 11, 2004 Report Share Posted March 11, 2004 Hi Patti, Welcome back, but I wish you didn't have to .....you know what I mean! As Glenna said I do hope the recent sz. Katera had were due to the illnesses. Rohan is off the diet and on Keppra too. I'm afraid it has stopped working and we are left with side effects, like being tired all the time and being sensitive to touch etc. The good news is that he will be investigated for the VNS in April. I'm not getting my hopes up too much, but it's something positive to try. Hope Katera has the same sz-free state again. You could always try the KGD again if necessary. Saro > > > > " 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 March 11, 2004 Report Share Posted March 11, 2004 Hi Patti, Welcome back, but I wish you didn't have to .....you know what I mean! As Glenna said I do hope the recent sz. Katera had were due to the illnesses. Rohan is off the diet and on Keppra too. I'm afraid it has stopped working and we are left with side effects, like being tired all the time and being sensitive to touch etc. The good news is that he will be investigated for the VNS in April. I'm not getting my hopes up too much, but it's something positive to try. Hope Katera has the same sz-free state again. You could always try the KGD again if necessary. Saro > > > > " 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 March 13, 2004 Report Share Posted March 13, 2004 Thanks, Rhonda! I think I am leaning toward a plan like yours. I have definitely decided to NOT do the Zonegran. It's good to be back. Glad to hear Shan is doing so well! Patti RE: Katera update Patti, It is nice to have you back on the list. You have such a wealth of experience and info. that I have wished the new people on the list had access to. Along with the others on the list, you add depth to the wealth of information/experience on the list. You left a hole when you left. Thinking objectively, it does look like you are running a risk of re-entering the drug merry-go-round. If you are not wanting to go further in the drug route, how about putting Katera on a 1:1 ratio. We have kept Shan on a 1:1 ratio for nearly a year. We have tried to wean twice but it brings the sleep seizures back. There is something about being 1:1 that keeps things in check. Yes, we have menus and weigh but it has not been as stressful as when the ratio was high. It gives her plenty of food to eat. We are not strict on that she has to eat at certain intervals and that the calories have to be evenly spaced. In fact, we give her 400cal at breakfast, 250 at morning tea (10:30), 300 at lunch (12:45pm), 100 at 3:00pm (after school snack), 350 at dinner, and 100 at bed time. We placed higher calories in the first part of the day due to she burns more in the morning as opposed to the latter part of the day. BTW Shan is basically SCD. We continue to give her lactose free yogurt cream as her primary fat. Rhonda (mom to Shan, age 9, ketokid 2 years, I think she's completely seizure free at this time....EEG would have to confirm, having some problems with a mild form of sleep terrors or could they possibly be partials...a form of sleep terrors seems to fit better) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Thanks, Rhonda! I think I am leaning toward a plan like yours. I have definitely decided to NOT do the Zonegran. It's good to be back. Glad to hear Shan is doing so well! Patti RE: Katera update Patti, It is nice to have you back on the list. You have such a wealth of experience and info. that I have wished the new people on the list had access to. Along with the others on the list, you add depth to the wealth of information/experience on the list. You left a hole when you left. Thinking objectively, it does look like you are running a risk of re-entering the drug merry-go-round. If you are not wanting to go further in the drug route, how about putting Katera on a 1:1 ratio. We have kept Shan on a 1:1 ratio for nearly a year. We have tried to wean twice but it brings the sleep seizures back. There is something about being 1:1 that keeps things in check. Yes, we have menus and weigh but it has not been as stressful as when the ratio was high. It gives her plenty of food to eat. We are not strict on that she has to eat at certain intervals and that the calories have to be evenly spaced. In fact, we give her 400cal at breakfast, 250 at morning tea (10:30), 300 at lunch (12:45pm), 100 at 3:00pm (after school snack), 350 at dinner, and 100 at bed time. We placed higher calories in the first part of the day due to she burns more in the morning as opposed to the latter part of the day. BTW Shan is basically SCD. We continue to give her lactose free yogurt cream as her primary fat. Rhonda (mom to Shan, age 9, ketokid 2 years, I think she's completely seizure free at this time....EEG would have to confirm, having some problems with a mild form of sleep terrors or could they possibly be partials...a form of sleep terrors seems to fit better) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Can we weigh heavy cream after it has been whipped? If so, can i use a auto whip as seen on http://www.easywhip.com/ Joziah has whip cream in every meal (4) ...... my arm is starting to get tired........ Thank You, Cleofi Blass This Email/Fax contains confidential information intended for a specific individual and purpose, and is protected by law. If you are not the intended recipient, you should delete this message. Any disclosure, copying, or distribution of this message, or the taking of any action based on it, is strictly prohibited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Can we weigh heavy cream after it has been whipped? If so, can i use a auto whip as seen on http://www.easywhip.com/ Joziah has whip cream in every meal (4) ...... my arm is starting to get tired........ Thank You, Cleofi Blass This Email/Fax contains confidential information intended for a specific individual and purpose, and is protected by law. If you are not the intended recipient, you should delete this message. Any disclosure, copying, or distribution of this message, or the taking of any action based on it, is strictly prohibited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Hi everyone, I've been hanging out here for a month or so, trying to muster up the energy to seriously think about putting Katera back on the diet. We visited our neuro yesterday and he actually wants us to consider a VNS. Katera only has about one seizure per month..... sometimes less than that..... but the ones she's been having have been intense and difficult to stop T-Cs. We had one a week or so ago that went on for 10 minutes, despite both Diastat and Ativan. We just need a better method of stopping these biggies. Our neuro has over a hundred patients with VNS's and is very enthusiastic about them. I'd love to hear from any of you who have experience with VNS...... I haven't paid a lot of attention to any discussion on them before because it was never considered as an option for us before. Meanwhile...... he wants me to put her back in ketosis while we decide (within the next couple of weeks) and keep her on the diet..... wean her off Keppra (which really isn't helping at all)..... and then see what difference the VNS makes before weaning the diet again. Katera has a tough time with getting overly ketotic easily...... so we'll be starting with a low ratio and working up. I gotta admit, I can BARELY stand the idea of weighing food again...... but at least the seizures she had while Keto were shorter and rarely required Diastat. <heavy sigh> Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Patti, Jake used to have prolonged GTCs pre diet, they were 20-50 minutes long, and he went into status once a month or so. The diet is the ONLY thing that ever stopped the prolonged bit. No meds helped in that area. So, if that is part of your goal, maybe weighing food again is worth a try?? I know how difficult it is to even think about it.... Jake has had the VNS since July 2000. It has not helped w/ seizures at all that I can tell. However, it HAS seemed to make his post ictal periods much shorter and he snaps back to " normal " much faster than before. Tough decision. If it helps, surgery was not nearly as bad as we had anticipated. He tolerated it well. Given a second chance, I would try a little diet again before surgery though. Sorry you are at this point again. Barb Swoyer, Jake's mom Katera update Hi everyone, I've been hanging out here for a month or so, trying to muster up the energy to seriously think about putting Katera back on the diet. We visited our neuro yesterday and he actually wants us to consider a VNS. Katera only has about one seizure per month..... sometimes less than that..... but the ones she's been having have been intense and difficult to stop T-Cs. We had one a week or so ago that went on for 10 minutes, despite both Diastat and Ativan. We just need a better method of stopping these biggies. Our neuro has over a hundred patients with VNS's and is very enthusiastic about them. I'd love to hear from any of you who have experience with VNS...... I haven't paid a lot of attention to any discussion on them before because it was never considered as an option for us before. Meanwhile...... he wants me to put her back in ketosis while we decide (within the next couple of weeks) and keep her on the diet..... wean her off Keppra (which really isn't helping at all)..... and then see what difference the VNS makes before weaning the diet again. Katera has a tough time with getting overly ketotic easily...... so we'll be starting with a low ratio and working up. I gotta admit, I can BARELY stand the idea of weighing food again...... but at least the seizures she had while Keto were shorter and rarely required Diastat. <heavy sigh> Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Patti, Jake used to have prolonged GTCs pre diet, they were 20-50 minutes long, and he went into status once a month or so. The diet is the ONLY thing that ever stopped the prolonged bit. No meds helped in that area. So, if that is part of your goal, maybe weighing food again is worth a try?? I know how difficult it is to even think about it.... Jake has had the VNS since July 2000. It has not helped w/ seizures at all that I can tell. However, it HAS seemed to make his post ictal periods much shorter and he snaps back to " normal " much faster than before. Tough decision. If it helps, surgery was not nearly as bad as we had anticipated. He tolerated it well. Given a second chance, I would try a little diet again before surgery though. Sorry you are at this point again. Barb Swoyer, Jake's mom Katera update Hi everyone, I've been hanging out here for a month or so, trying to muster up the energy to seriously think about putting Katera back on the diet. We visited our neuro yesterday and he actually wants us to consider a VNS. Katera only has about one seizure per month..... sometimes less than that..... but the ones she's been having have been intense and difficult to stop T-Cs. We had one a week or so ago that went on for 10 minutes, despite both Diastat and Ativan. We just need a better method of stopping these biggies. Our neuro has over a hundred patients with VNS's and is very enthusiastic about them. I'd love to hear from any of you who have experience with VNS...... I haven't paid a lot of attention to any discussion on them before because it was never considered as an option for us before. Meanwhile...... he wants me to put her back in ketosis while we decide (within the next couple of weeks) and keep her on the diet..... wean her off Keppra (which really isn't helping at all)..... and then see what difference the VNS makes before weaning the diet again. Katera has a tough time with getting overly ketotic easily...... so we'll be starting with a low ratio and working up. I gotta admit, I can BARELY stand the idea of weighing food again...... but at least the seizures she had while Keto were shorter and rarely required Diastat. <heavy sigh> Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Patti... Just read this! Hate to hear things have gotten worse for Katera. UGH! I just posted Sev's story with the VNS. It was a hard decision...i HATED the idea of surgery. But it's been worth it for sure. Until then, just get out your lab coat and scale and planner and be the mad scientist again! I KNOW it has to be hard to think of going back, but you can surely do it...you're a KETO PRO. STick to a few tried and true recipes until you get the hang of it again. HUGS...and some more HUGS...Nan and Sevi! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Patti... Just read this! Hate to hear things have gotten worse for Katera. UGH! I just posted Sev's story with the VNS. It was a hard decision...i HATED the idea of surgery. But it's been worth it for sure. Until then, just get out your lab coat and scale and planner and be the mad scientist again! I KNOW it has to be hard to think of going back, but you can surely do it...you're a KETO PRO. STick to a few tried and true recipes until you get the hang of it again. HUGS...and some more HUGS...Nan and Sevi! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Patti... Just read this! Hate to hear things have gotten worse for Katera. UGH! I just posted Sev's story with the VNS. It was a hard decision...i HATED the idea of surgery. But it's been worth it for sure. Until then, just get out your lab coat and scale and planner and be the mad scientist again! I KNOW it has to be hard to think of going back, but you can surely do it...you're a KETO PRO. STick to a few tried and true recipes until you get the hang of it again. HUGS...and some more HUGS...Nan and Sevi! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi Patti Have you thought about the Atkins diet for ketosis Have you read the article from Hopkins? 10 gms/carbs/day--careful on calories--for seizure control they still want our kids low in body fat If I had to do it all over I would start with Atkins them Keto or at least a modified Atkins/Keto approach You can always add the extra fat if you want Just a thought What ever you have to do--you know it is for Katera--you will have the strength to do anything Hoping you get good info on the VNS Have not had to look into it--but what I have read-seems to be positive Best to you, Katera and your family Thoughts and prayers are with you Sandi Quote Link to comment Share on other sites More sharing options...
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