Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Hi Saro Mike finally settled after about a week of constant seizures with the acidophilus- turns out it did have dairy products so this just helps confirm my allergy theory- not that I ever want to test it that way again. Mike continues to improve a little each week. We have had many good days but mixed with bad but overall I am happy with how things are going. I feel like I am feeling my way along a very dark road and wish I could have some light but I track things very carefully and observe everything. Mike's diet is not keto but still quite restricted. I introduced some fruit this week but had bad results. He is still having hypoglycemia and needing hi protein and snacks every two hours but we are having fewer seizures. The seizures are changing also- fewer drops and those that do happen are mild- they used to have a hard grunt and a violent fall- now there is no noise and just a slight stumble- can't explain it but I will take it. Tonic/clonics are fewer also- not gone but improving- I think. We do seem to have more small myoclonics but they are manageable. Overall this is OK. Better than with drugs and I think better than Keto but still evaluating that. New things I have done- chromium seemed to be a problem. Caused upset tummy and loss of appetite- so stopped that one. I buy most supplements from a supplier that gives money back if not satisfied or if it doesn't work- good thing or else I would be broke by now. I continue to experiment with Spirulina- not sure if it is doing anything or not- have only used it a couple of times- gave Mike alot of time to recover from the acidoph. fiasco. I am planning on using Kyolic garlic in place of the acid. I hope the end results will be the same but get a better process. I have also introduced Swedish Bitters to help digestion. My newest query however is my wierdest yet though I think- or so my hubby says. The last three Grand- mal seizures that Mike had were just following long baths. He has always had seizures around bath time so I have always wondered why? Maybe the heat, maybe the chemicals in the soap- who knows? I now think it is chlorine in the water. If Mike drinks tap water- myoclonics start- if he has bottled water- no problem. My research says during an avg bath the body absorbs the equivalent amount of chlorine as drinking 8 glasses of water- so my new project for hubby is to install carbon filters on the tub. I hope he gets it done soon- poor Mike is getting pretty dirty since I won't let him take a bath- Ha Ha- not really. I know I am starting to sound a bit obsessive and a bit of a nature freak but thats OK I think it is helping. I was interested in your reaction to the osteopath. I hope you start to see results soon. Have you given any more consideration to the allergy theory or received the Doris Rapp book yet? Thanks for thinking about us. I have felt that I have not had much to contribute to the List lately being off the diet . I hope my crazy ideas help stimulate some thoughts . Talk soon. Faye sanaljay wrote: > Hi Faye, > How is Mike doing after you stopped the acidophilus? > I've been giving it to Rohan for a week with no apparent > problems. The brand we use is Solgar - let me know if > you want details of it. The nightly sz turned out to be > due to 200 iu of vit E at night. We still haven't got the > balance of things right. Ketones too low - lot of absences > and longer generalized sz. Too high - sleep sz and short > sudden sz in the day. Also Rohan is extremely sensitive > to supplements etc now. > Keep us informed about Mike's progress. We might see > something that works for both Mike and Rohan. > 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 > > > " It is not how much we do, but how much love we put into doing it. It is not > how much we give, but how much love we put into the giving. " Mother > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Hi Faye, Glad to hear that things are better now for Mike than before. Don't feel you are getting to be a nature freak, we have to explore all avenues as our kids are not conforming to the norm. I've heard that chlorine/fluorine is not good for sz etc. Luckily our tap water comes from a bore-hole and has no additives. I think installing a filter would be a good idea if you feel the tap water is a problem. We had a second session with the osteopath, and dh is v. sceptical. We were told that things felt less tense than on the first occasion. The osteopath doesn't test reaction to things etc. and it's rather expensive. However we'll go for a few more sessions before deciding whether to continue. Rohan seems to be getting v.angry the last couple of days, like when he was on AEDs. I get more and more confused. One thing I noticed was that when we stopped the vit E his urine pH went high, as high as 7.5 one day. Hope things continue to get better for Mike, keep us posted. Saro kevin cooper wrote: > Hi Saro > Mike finally settled after about a week of constant seizures with the > acidophilus- turns out it > did have dairy products so this just helps confirm my allergy theory- > not that I ever want to > test it that way again. Mike continues to improve a little each week. > We have had many good days > but mixed with bad but overall I am happy with how things are going. > I feel like I am feeling > my way along a very dark road and wish I could have some light but I > track things very > carefully and observe everything. Mike's diet is not keto but still > quite restricted. I > introduced some fruit this week but had bad results. He is still > having hypoglycemia and needing > hi protein and snacks every two hours but we are having fewer > seizures. The seizures are > changing also- fewer drops and those that do happen are mild- they > used to have a hard grunt > and a violent fall- now there is no noise and just a slight stumble- > can't explain it but I > will take it. Tonic/clonics are fewer also- not gone but improving- I > think. We do seem to have > more small myoclonics but they are manageable. Overall this is OK. > Better than with drugs and I > think better than Keto but still evaluating that. New things I have > done- chromium seemed to be > a problem. Caused upset tummy and loss of appetite- so stopped that > one. I buy most supplements > from a supplier that gives money back if not satisfied or if it > doesn't work- good thing or > else I would be broke by now. I continue to experiment with Spirulina- > not sure if it is doing > anything or not- have only used it a couple of times- gave Mike alot > of time to recover from > the acidoph. fiasco. I am planning on using Kyolic garlic in place of > the acid. I hope the end > results will be the same but get a better process. I have also > introduced Swedish Bitters to > help digestion. > My newest query however is my wierdest yet though I think- or so my > hubby says. The last three > Grand- mal seizures that Mike had were just following long baths. He > has always had seizures > around bath time so I have always wondered why? Maybe the heat, maybe > the chemicals in the soap- > who knows? I now think it is chlorine in the water. If Mike drinks tap > water- myoclonics start- > if he has bottled water- no problem. My research says during an avg > bath the body absorbs the > equivalent amount of chlorine as drinking 8 glasses of water- so my > new project for hubby is to > install carbon filters on the tub. I hope he gets it done soon- poor > Mike is getting pretty > dirty since I won't let him take a bath- Ha Ha- not really. I know I > am starting to sound a bit > obsessive and a bit of a nature freak but thats OK I think it is > helping. > I was interested in your reaction to the osteopath. I hope you start > to see results soon. Have > you given any more consideration to the allergy theory or received the > Doris Rapp book yet? > Thanks for thinking about us. I have felt that I have not had much to > contribute to the List > lately being off the diet . I hope my crazy ideas help stimulate some > thoughts . > Talk soon. > Faye > > sanaljay wrote: > > > Hi Faye, > > How is Mike doing after you stopped the acidophilus? > > I've been giving it to Rohan for a week with no apparent > > problems. The brand we use is Solgar - let me know if > > you want details of it. The nightly sz turned out to be > > due to 200 iu of vit E at night. We still haven't got the > > balance of things right. Ketones too low - lot of absences > > and longer generalized sz. Too high - sleep sz and short > > sudden sz in the day. Also Rohan is extremely sensitive > > to supplements etc now. > > Keep us informed about Mike's progress. We might see > > something that works for both Mike and Rohan. > > 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 > > > > > > " It is not how much we do, but how much love we put > into doing it. It is not > > how much we give, but how much love we put into the giving. " Mother > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hi De Ette I appreciate the support. I think there is alot of validity in this chlorine thing so will persist with Mike- even if there was no effect on seizures i now feel better with the whole family drinking healthier stuff. thanks for the offer to look for the filter. We have already installed Reverse osmosis system on kitchen fawcets and carbon filters have been ordered for the rest of the house- should be here by end of the week. I will certainly keep posting. I know i am following a slightly different route but it is all based on stuff i have learned over the past year while on Keto- our diet now is still very keto minus the weighing and calculating- still using alot of my recipes and following the same principles to keep the body slightly acidic with foods. Mike is actually doing great- we actually just got to 9 days without a GM seizure. These were running every 3-4 days while on full keto so I will take every little improvement that I can get. Today Mike's teacher approached me. we had decided a couple of months ago that Mike was not ready to advance to Grade 1- he was haveing a really hard time. Today she wants him to move on. He has just come to life in the last month she says and now while she still thinks he will struggle a little next year he is ready to move up. So that too is a good thing I think. We will continue this way for a while. Things are changing daily- mostly for the good. I will keep posting. Faye " Person, DeEtte " wrote: > Faye -- I don't think your theory about chlorine is crazy at all. The > naturopath we used to work with felt that was strongly sensitive to > chlorine. She recommended the carbon filters, too -- and my husband, who > actually is kind of an earth muffin -- thought that was crazy and never did > it. Since then, I've seen advertised in a couple catalogs and at Wild Oats, > a carbon filter that you can float in the bath tub. Maybe you could try > that first? Let me know if you want me to track down more info on it. I > haven't bought it yet, because I don't think chlorine is actually an issue > with 's seizures. . . more of an issue with her bladder. But now that > we're swimming again, I'm starting to see more " accidents " -- it's almost as > if she goes numb down there. . . I see it with my other daughter, too. > Another weird anecdote about chlorine -- my best friend from high school was > a champion swimmer. She had a number of miscarriages and tubal pregnancies. > . . they finally told her that it was probably all those years of chlorine > exposure! > > 's had two seizures after being on vacation where there was a pool > connected to a hot tub. I know I shouldn't have let her get in. . but I > did. . . within 1/2 hour each time, she had a complex partial. My theory > there is the heat. > > Please keep posting Faye. . . I love your perspective and recipes. . .and > totally support and am fascinated by this road you're walking down with > Mike. -[Person, DeEtte] -D Re: Faye/Mike > > Hi Saro > Mike finally settled after about a week of constant seizures with the > acidophilus- turns out it > did have dairy products so this just helps confirm my allergy theory- not > that I ever want to > test it that way again. Mike continues to improve a little each week. We > have had many good days > but mixed with bad but overall I am happy with how things are going. I feel > like I am feeling > my way along a very dark road and wish I could have some light but I track > things very > carefully and observe everything. Mike's diet is not keto but still quite > restricted. I > introduced some fruit this week but had bad results. He is still having > hypoglycemia and needing > hi protein and snacks every two hours but we are having fewer seizures. The > seizures are > changing also- fewer drops and those that do happen are mild- they used to > have a hard grunt > and a violent fall- now there is no noise and just a slight stumble- can't > explain it but I > will take it. Tonic/clonics are fewer also- not gone but improving- I think. > We do seem to have > more small myoclonics but they are manageable. Overall this is OK. Better > than with drugs and I > think better than Keto but still evaluating that. New things I have done- > chromium seemed to be > a problem. Caused upset tummy and loss of appetite- so stopped that one. I > buy most supplements > from a supplier that gives money back if not satisfied or if it doesn't > work- good thing or > else I would be broke by now. I continue to experiment with Spirulina- not > sure if it is doing > anything or not- have only used it a couple of times- gave Mike alot of > time to recover from > the acidoph. fiasco. I am planning on using Kyolic garlic in place of the > acid. I hope the end > results will be the same but get a better process. I have also introduced > Swedish Bitters to > help digestion. > My newest query however is my wierdest yet though I think- or so my hubby > says. The last three > Grand- mal seizures that Mike had were just following long baths. He has > always had seizures > around bath time so I have always wondered why? Maybe the heat, maybe the > chemicals in the soap- > who knows? I now think it is chlorine in the water. If Mike drinks tap > water- myoclonics start- > if he has bottled water- no problem. My research says during an avg bath the > body absorbs the > equivalent amount of chlorine as drinking 8 glasses of water- so my new > project for hubby is to > install carbon filters on the tub. I hope he gets it done soon- poor Mike is > getting pretty > dirty since I won't let him take a bath- Ha Ha- not really. I know I am > starting to sound a bit > obsessive and a bit of a nature freak but thats OK I think it is helping. > I was interested in your reaction to the osteopath. I hope you start to see > results soon. Have > you given any more consideration to the allergy theory or received the Doris > Rapp book yet? > Thanks for thinking about us. I have felt that I have not had much to > contribute to the List > lately being off the diet . I hope my crazy ideas help stimulate some > thoughts . > Talk soon. > Faye > > sanaljay wrote: > > > Hi Faye, > > How is Mike doing after you stopped the acidophilus? > > I've been giving it to Rohan for a week with no apparent > > problems. The brand we use is Solgar - let me know if > > you want details of it. The nightly sz turned out to be > > due to 200 iu of vit E at night. We still haven't got the > > balance of things right. Ketones too low - lot of absences > > and longer generalized sz. Too high - sleep sz and short > > sudden sz in the day. Also Rohan is extremely sensitive > > to supplements etc now. > > Keep us informed about Mike's progress. We might see > > something that works for both Mike and Rohan. > > 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 > > > > > > " It is not how much we do, but how much love we put into > doing it. It is not > > how much we give, but how much love we put into the giving. " Mother > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hi De Ette I appreciate the support. I think there is alot of validity in this chlorine thing so will persist with Mike- even if there was no effect on seizures i now feel better with the whole family drinking healthier stuff. thanks for the offer to look for the filter. We have already installed Reverse osmosis system on kitchen fawcets and carbon filters have been ordered for the rest of the house- should be here by end of the week. I will certainly keep posting. I know i am following a slightly different route but it is all based on stuff i have learned over the past year while on Keto- our diet now is still very keto minus the weighing and calculating- still using alot of my recipes and following the same principles to keep the body slightly acidic with foods. Mike is actually doing great- we actually just got to 9 days without a GM seizure. These were running every 3-4 days while on full keto so I will take every little improvement that I can get. Today Mike's teacher approached me. we had decided a couple of months ago that Mike was not ready to advance to Grade 1- he was haveing a really hard time. Today she wants him to move on. He has just come to life in the last month she says and now while she still thinks he will struggle a little next year he is ready to move up. So that too is a good thing I think. We will continue this way for a while. Things are changing daily- mostly for the good. I will keep posting. Faye " Person, DeEtte " wrote: > Faye -- I don't think your theory about chlorine is crazy at all. The > naturopath we used to work with felt that was strongly sensitive to > chlorine. She recommended the carbon filters, too -- and my husband, who > actually is kind of an earth muffin -- thought that was crazy and never did > it. Since then, I've seen advertised in a couple catalogs and at Wild Oats, > a carbon filter that you can float in the bath tub. Maybe you could try > that first? Let me know if you want me to track down more info on it. I > haven't bought it yet, because I don't think chlorine is actually an issue > with 's seizures. . . more of an issue with her bladder. But now that > we're swimming again, I'm starting to see more " accidents " -- it's almost as > if she goes numb down there. . . I see it with my other daughter, too. > Another weird anecdote about chlorine -- my best friend from high school was > a champion swimmer. She had a number of miscarriages and tubal pregnancies. > . . they finally told her that it was probably all those years of chlorine > exposure! > > 's had two seizures after being on vacation where there was a pool > connected to a hot tub. I know I shouldn't have let her get in. . but I > did. . . within 1/2 hour each time, she had a complex partial. My theory > there is the heat. > > Please keep posting Faye. . . I love your perspective and recipes. . .and > totally support and am fascinated by this road you're walking down with > Mike. -[Person, DeEtte] -D Re: Faye/Mike > > Hi Saro > Mike finally settled after about a week of constant seizures with the > acidophilus- turns out it > did have dairy products so this just helps confirm my allergy theory- not > that I ever want to > test it that way again. Mike continues to improve a little each week. We > have had many good days > but mixed with bad but overall I am happy with how things are going. I feel > like I am feeling > my way along a very dark road and wish I could have some light but I track > things very > carefully and observe everything. Mike's diet is not keto but still quite > restricted. I > introduced some fruit this week but had bad results. He is still having > hypoglycemia and needing > hi protein and snacks every two hours but we are having fewer seizures. The > seizures are > changing also- fewer drops and those that do happen are mild- they used to > have a hard grunt > and a violent fall- now there is no noise and just a slight stumble- can't > explain it but I > will take it. Tonic/clonics are fewer also- not gone but improving- I think. > We do seem to have > more small myoclonics but they are manageable. Overall this is OK. Better > than with drugs and I > think better than Keto but still evaluating that. New things I have done- > chromium seemed to be > a problem. Caused upset tummy and loss of appetite- so stopped that one. I > buy most supplements > from a supplier that gives money back if not satisfied or if it doesn't > work- good thing or > else I would be broke by now. I continue to experiment with Spirulina- not > sure if it is doing > anything or not- have only used it a couple of times- gave Mike alot of > time to recover from > the acidoph. fiasco. I am planning on using Kyolic garlic in place of the > acid. I hope the end > results will be the same but get a better process. I have also introduced > Swedish Bitters to > help digestion. > My newest query however is my wierdest yet though I think- or so my hubby > says. The last three > Grand- mal seizures that Mike had were just following long baths. He has > always had seizures > around bath time so I have always wondered why? Maybe the heat, maybe the > chemicals in the soap- > who knows? I now think it is chlorine in the water. If Mike drinks tap > water- myoclonics start- > if he has bottled water- no problem. My research says during an avg bath the > body absorbs the > equivalent amount of chlorine as drinking 8 glasses of water- so my new > project for hubby is to > install carbon filters on the tub. I hope he gets it done soon- poor Mike is > getting pretty > dirty since I won't let him take a bath- Ha Ha- not really. I know I am > starting to sound a bit > obsessive and a bit of a nature freak but thats OK I think it is helping. > I was interested in your reaction to the osteopath. I hope you start to see > results soon. Have > you given any more consideration to the allergy theory or received the Doris > Rapp book yet? > Thanks for thinking about us. I have felt that I have not had much to > contribute to the List > lately being off the diet . I hope my crazy ideas help stimulate some > thoughts . > Talk soon. > Faye > > sanaljay wrote: > > > Hi Faye, > > How is Mike doing after you stopped the acidophilus? > > I've been giving it to Rohan for a week with no apparent > > problems. The brand we use is Solgar - let me know if > > you want details of it. The nightly sz turned out to be > > due to 200 iu of vit E at night. We still haven't got the > > balance of things right. Ketones too low - lot of absences > > and longer generalized sz. Too high - sleep sz and short > > sudden sz in the day. Also Rohan is extremely sensitive > > to supplements etc now. > > Keep us informed about Mike's progress. We might see > > something that works for both Mike and Rohan. > > 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 > > > > > > " It is not how much we do, but how much love we put into > doing it. It is not > > how much we give, but how much love we put into the giving. " Mother > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hooray for Mike and for his Mom for being so persistent!!! Moving on to second grade. . .that's a huge step. I'm thrilled for you guys! 's going to Kindergarten a year late due to the horrible year she had last year. . .so drugged up and seizure-ridden, she could barely focus or concentrate. My fervent hope is that we can find that magic combination that will enable her to blossom fully, too -- my thought right now on the diet is that it should enable her to go drug-free. . .then we may need to work on the seizure-free part using other alternatives like you're pursuing. I'm right behind you, girl. . .cheering all the way and watching every step with interest!--D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Hooray for Mike and for his Mom for being so persistent!!! Moving on to second grade. . .that's a huge step. I'm thrilled for you guys! 's going to Kindergarten a year late due to the horrible year she had last year. . .so drugged up and seizure-ridden, she could barely focus or concentrate. My fervent hope is that we can find that magic combination that will enable her to blossom fully, too -- my thought right now on the diet is that it should enable her to go drug-free. . .then we may need to work on the seizure-free part using other alternatives like you're pursuing. I'm right behind you, girl. . .cheering all the way and watching every step with interest!--D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Faye..... this is SOOOO good to hear! Bravo! Patti Re: Faye/Mike << ..He has just come to life in the last month she says and now while she still thinks he will struggle a little next year he is ready to move up. So that too is a good thing I think. We will continue this way for a while. Things are changing daily- mostly for the good. I will keep posting. Faye>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 Faye..... this is SOOOO good to hear! Bravo! Patti Re: Faye/Mike << ..He has just come to life in the last month she says and now while she still thinks he will struggle a little next year he is ready to move up. So that too is a good thing I think. We will continue this way for a while. Things are changing daily- mostly for the good. I will keep posting. Faye>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Hi Faye, I echo what D says. BTW what do you think now works more, since coming off the KGD? I know it is still like the diet but you don't weigh etc. - so is it the supplements? or giving more meals ? I'd really like a recap on the things you are giving Mike now. Congratulations to Mike on his doing well at school. Saro " Person, DeEtte " wrote: > Hooray for Mike and for his Mom for being so persistent!!! Moving on > to > second grade. . .that's a huge step. I'm thrilled for you guys! > 's > going to Kindergarten a year late due to the horrible year she had > last > year. . .so drugged up and seizure-ridden, she could barely focus or > concentrate. My fervent hope is that we can find that magic > combination > that will enable her to blossom fully, too -- my thought right now on > the > diet is that it should enable her to go drug-free. . .then we may need > to > work on the seizure-free part using other alternatives like you're > pursuing. > I'm right behind you, girl. . .cheering all the way and watching every > step > with interest!--D > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Hi Saro I don't think that it is either diet or supplements alone that are working. I believe that I need to look at the big picture. For the past several months I have had my head stuck in a book trying to figure what makes a healthy body and what makes an unhealthy one. I have been perplexed since the day that Mike's seizures started as to why?. The docs have done every imaginable test and nothing abnormal so why seizures? Well I think that if you give the body every thing it needs to be healthy, and in the absence of any abnormality, then the body should be healthy- simple, right. So I am trying to provide Mike with a healthy environment- inside and out- hense the big picture. The meals are important- simple , pure healthy food- as much organic as I can get in Atlantic Canada- absolutely no additives etc. I give high protein to even out blood sugar, alot of raw veggies for natural enzymes , nothing sweet- even fruit ( except very diluted juice). Meals are every two hours in small manageable amounts. Supplements - I will list below- but I think these are critical. Todays foods are deficient in alot of nutrients so I think we need to supplement. I use high numbers right now. I feel that because Mike had poor supplements for the past year while on Keto ( only switched to better stuff in March/April) that I need alot of supplements for a while longer- I will probably drop down on some in a couple of months. Water- well I am seeing a huge improvement with non-chlorinated water- not only for drinking but bathing/cooking etc. I have gone so far as to remove all clorine ( or as much as possible from our lives)- detergents, cleaning product and dishwasher soap. I have tried to remove all mold/fungi from our environment- or to remove Mike from damp mouldy places. I am trying to attack this from all angles. I truely believe that Mikes seizures were originally caused by food intolerances which led to imbalances in the intestine resulting in a yeast overgrowth. In addition to other allergies ( environmental) and parasites. When I think back to the series of events leading up to the beginning of his seizures this all makes so much sense. Now I am trying to reverse it. Eliminate allergens, clean environment, reduce yeast. So far -so good. Mike just had Three glorious days- not a seizure in sight- for us that is amazing. His thoughts were as clear as a bell and he had energy to spare. It all fell apart at 4:00 today with a grand Mal but get this- every other GM that Mike has ever had has left him sleeping for hours and upon waking he is groggy and spaced out all day. Today seizure over in a couple on minutes, he is up and playing Nintendo- not winning mind you- but 2 hours later we went grocery shopping- this is certainly new and different- something is happening and it feels good. Today's seizure came after Mike went to a school event and he was allowed ( got to love Father's) to get his face painted- Red paint. Oh well Hubby now knows face painting is off limits. Anyway - I read somewhere about the Barrel Theory- the body is like a barrel. It can fill so full of toxins ( or things it sees as toxins) and handle it Ok. However once full ,the barrel overflows and symptoms occur and then something must occur to empty the barrel. I am trying to empty the barrel. These are the supplements we use Multivitamin- mega vit split between each meal Vit c- 500 mg at each meal - also 500 mg in multi Vit B complex- 50 mg/meal plus 160 mg in mulit Vit E 300 IU daily- D alpha tocopherol form given at lunch Cal/Mag/vit d- at each meal and before bed Digestive enzymes at each meal and sncak Co Q 10 enzyme - 1/day Kyolic Garlic- given breakfast and supper- 200 mg each I am excited about the improvements we are seeing. We are still waiting with baited breath as we know that Mike is a master at accomodation and all this may end at any moment but there has been such a remarkable change in Mike that I am convinced that if we can get the seizures under control we will have him back. At times we have wondered if some of this was permanent damage- I know Mike is in there- we just have to get to him. Sorry for rambling so long. Hope some of this helps you with this puzzle and some of it applies to Rohan. Faye sanaljay wrote: > Hi Faye, > I echo what D says. BTW what do you think now > works more, since coming off the KGD? I know it > is still like the diet but you don't weigh etc. - so is it the > supplements? or giving more meals ? > I'd really like a recap on the things you are giving Mike > now. > Congratulations to Mike on his doing well at school. > Saro > > " Person, DeEtte " wrote: > > > Hooray for Mike and for his Mom for being so persistent!!! Moving on > > to > > second grade. . .that's a huge step. I'm thrilled for you guys! > > 's > > going to Kindergarten a year late due to the horrible year she had > > last > > year. . .so drugged up and seizure-ridden, she could barely focus or > > concentrate. My fervent hope is that we can find that magic > > combination > > that will enable her to blossom fully, too -- my thought right now on > > the > > diet is that it should enable her to go drug-free. . .then we may need > > to > > work on the seizure-free part using other alternatives like you're > > pursuing. > > I'm right behind you, girl. . .cheering all the way and watching every > > step > > with interest!--D > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 I just finished reading this post and I am so over-whelelmed. I think you have something going. This is such a grand concept. I want to print your post and show it to my doctor. I have so many questions for him now and you have put so many ideas in my head. Like Mike, Keri has been through a whole battery of test and they can give me no explaination as to why she seizes. We even did the genitic testing, took tubes, and tubes of blood, a family tree work up to determain why every one died, childhood illnesses, birth problems, every thing you can think of and nothing serfaced to explain a thing. So the last thing I was told was to stop trying to figure out the why and work on solving the problem. Well how can you solve a problem when you don't know why you have it??? Any way, can I please share your thoughts and ideas with my neuro and dietitian? --- kevin cooper wrote: > Hi Saro > I don't think that it is either diet or supplements > alone that are working. I believe that I > need to look at the big picture. For the past > several months I have had my head stuck in a book > trying to figure what makes a healthy body and what > makes an unhealthy one. I have been > perplexed since the day that Mike's seizures started > as to why?. The docs have done every > imaginable test and nothing abnormal so why > seizures? Well I think that if you give the body > every thing it needs to be healthy, and in the > absence of any abnormality, then the body should > be healthy- simple, right. So I am trying to provide > Mike with a healthy environment- inside and > out- hense the big picture. The meals are important- > simple , pure healthy food- as much organic > as I can get in Atlantic Canada- absolutely no > additives etc. I give high protein to even out > blood sugar, alot of raw veggies for natural enzymes > , nothing sweet- even fruit ( except very > diluted juice). Meals are every two hours in small > manageable amounts. Supplements - I will > list below- but I think these are critical. Todays > foods are deficient in alot of nutrients so I > think we need to supplement. I use high numbers > right now. I feel that because Mike had poor > supplements for the past year while on Keto ( only > switched to better stuff in March/April) that > I need alot of supplements for a while longer- I > will probably drop down on some in a couple of > months. Water- well I am seeing a huge improvement > with non-chlorinated water- not only for > drinking but bathing/cooking etc. I have gone so far > as to remove all clorine ( or as much as > possible from our lives)- detergents, cleaning > product and dishwasher soap. I have tried to > remove all mold/fungi from our environment- or to > remove Mike from damp mouldy places. I am > trying to attack this from all angles. > I truely believe that Mikes seizures were originally > caused by food intolerances which led to > imbalances in the intestine resulting in a yeast > overgrowth. In addition to other allergies ( > environmental) and parasites. When I think back to > the series of events leading up to the > beginning of his seizures this all makes so much > sense. Now I am trying to reverse it. Eliminate > allergens, clean environment, reduce yeast. So far > -so good. Mike just had Three glorious days- > not a seizure in sight- for us that is amazing. His > thoughts were as clear as a bell and he had > energy to spare. It all fell apart at 4:00 today > with a grand Mal but get this- every other GM > that Mike has ever had has left him sleeping for > hours and upon waking he is groggy and spaced > out all day. Today seizure over in a couple on > minutes, he is up and playing Nintendo- not > winning mind you- but 2 hours later we went grocery > shopping- this is certainly new and > different- something is happening and it feels good. > Today's seizure came after Mike went to a > school event and he was allowed ( got to love > Father's) to get his face painted- Red paint. Oh > well Hubby now knows face painting is off limits. > Anyway - I read somewhere about the Barrel Theory- > the body is like a barrel. It can fill so > full of toxins ( or things it sees as toxins) and > handle it Ok. However once full ,the barrel > overflows and symptoms occur and then something must > occur to empty the barrel. I am trying to > empty the barrel. > These are the supplements we use > Multivitamin- mega vit split between each meal > Vit c- 500 mg at each meal - also 500 mg in multi > Vit B complex- 50 mg/meal plus 160 mg in mulit > Vit E 300 IU daily- D alpha tocopherol form given at > lunch > Cal/Mag/vit d- at each meal and before bed > Digestive enzymes at each meal and sncak > Co Q 10 enzyme - 1/day > Kyolic Garlic- given breakfast and supper- 200 mg > each > I am excited about the improvements we are seeing. > We are still waiting with baited breath as > we know that Mike is a master at accomodation and > all this may end at any moment but there has > been such a remarkable change in Mike that I am > convinced that if we can get the seizures under > control we will have him back. At times we have > wondered if some of this was permanent damage- I > know Mike is in there- we just have to get to him. > Sorry for rambling so long. Hope some of this > helps you with this puzzle and some of it applies > to Rohan. > Faye > > sanaljay wrote: > > > Hi Faye, > > I echo what D says. BTW what do you think now > > works more, since coming off the KGD? I know it > > is still like the diet but you don't weigh etc. - > so is it the > > supplements? or giving more meals ? > > I'd really like a recap on the things you are > giving Mike > > now. > > Congratulations to Mike on his doing well at > school. > > Saro > > > > " Person, DeEtte " wrote: > > > > > Hooray for Mike and for his Mom for being so > persistent!!! Moving on > > > to > > > second grade. . .that's a huge step. I'm > thrilled for you guys! > > > 's > > > going to Kindergarten a year late due to the > horrible year she had > > > last > > > year. . .so drugged up and seizure-ridden, she > could barely focus or > > > concentrate. My fervent hope is that we can > find that magic > > > combination > > > that will enable her to blossom fully, too -- my > thought right now on > > > the > > > diet is that it should enable her to go > drug-free. . .then we may need > > > to > > > work on the seizure-free part using other > alternatives like you're > > > pursuing. > > > I'm right behind you, girl. . .cheering all the > way and watching every > > > step > > > with interest!--D > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Hi Faye, Thanks a lot for the info you gave me re. what you've done with Mike. I'm really pleased it's working. I'm so afraid to try anything as Rohan is so sensitive to any change .... mind you we are not doing well at the moment. I'll give an update on him separately as I'd like to see whether anything occurs to anyone. Keep up the good work. Saro Quote Link to comment Share on other sites More sharing options...
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