Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi everyone! I am new to this group and have spent the last week trying to read as many posts as I could. Your messages have motivated, inspired and empowered us. We are getting ready to start our 23 month old son, , on the diet on May 31. He has generalized epilepsy and for the last 10 months has had every type of seizure. His pattern now is about 45 atonic seizures a day. We've tried 4 medicines (Zarontin, depakane, Topamax and Keppra) and so far the Keppra is the only drug that has showed any influence and even that was minimal. We are very excited to be starting this diet. I know it is difficult so that is why I am posting...I would appreciate any words of wisdom or advice that you can offer us. We really want this to work and while we've read as much as we can in books I've found that real life experiences are the best teaching tools around. I look forward to reading more of your posts and learning about all of you. You all are truly inspirational parents and your little ones are blessed to have you. Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hello and welcome. I don't post much anymore, mainly lurk because after 2.5 yrs. on the diet Hannah is seizure/med free. In June it will be a year that she has been off the diet. She will be 9 later this summer. Her seizures were just about all Atonic. She also did not respond to meds and after one year of trying different drugs we pushed Cleveland Clinic to let us do the diet. No doubt about it, it is difficult in the beginning. We would sometimes just sit and cry together. BUT, very much worth all the work and after several months you will realize that it just is a way of life. You won't have to think about it constantly and the results of having Hannah med free/fog free and seeing her bounce back to her old self were so much worth it. Read and read some more. If you go into this with as much info as possible, I believe that will help. Read the posts here and just keep as positive as you can about the road that lies ahead! I wish you the best with . Our church and many other churches were praying for Hannah and I know that God was in control of it all! Take care Gail > Hi everyone! I am new to this group and have spent the last week > trying to read as many posts as I could. Your messages have > motivated, inspired and empowered us. We are getting ready to start > our 23 month old son, , on the diet on May 31. He has > generalized epilepsy and for the last 10 months has had every type > of seizure. His pattern now is about 45 atonic seizures a day. We've > tried 4 medicines (Zarontin, depakane, Topamax and Keppra) and so > far the Keppra is the only drug that has showed any influence and > even that was minimal. > We are very excited to be starting this diet. I know it is difficult > so that is why I am posting...I would appreciate any words of wisdom > or advice that you can offer us. We really want this to work and > while we've read as much as we can in books I've found that real > life experiences are the best teaching tools around. > I look forward to reading more of your posts and learning about all > of you. You all are truly inspirational parents and your little ones > are blessed to have you. > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hello and welcome. I don't post much anymore, mainly lurk because after 2.5 yrs. on the diet Hannah is seizure/med free. In June it will be a year that she has been off the diet. She will be 9 later this summer. Her seizures were just about all Atonic. She also did not respond to meds and after one year of trying different drugs we pushed Cleveland Clinic to let us do the diet. No doubt about it, it is difficult in the beginning. We would sometimes just sit and cry together. BUT, very much worth all the work and after several months you will realize that it just is a way of life. You won't have to think about it constantly and the results of having Hannah med free/fog free and seeing her bounce back to her old self were so much worth it. Read and read some more. If you go into this with as much info as possible, I believe that will help. Read the posts here and just keep as positive as you can about the road that lies ahead! I wish you the best with . Our church and many other churches were praying for Hannah and I know that God was in control of it all! Take care Gail > Hi everyone! I am new to this group and have spent the last week > trying to read as many posts as I could. Your messages have > motivated, inspired and empowered us. We are getting ready to start > our 23 month old son, , on the diet on May 31. He has > generalized epilepsy and for the last 10 months has had every type > of seizure. His pattern now is about 45 atonic seizures a day. We've > tried 4 medicines (Zarontin, depakane, Topamax and Keppra) and so > far the Keppra is the only drug that has showed any influence and > even that was minimal. > We are very excited to be starting this diet. I know it is difficult > so that is why I am posting...I would appreciate any words of wisdom > or advice that you can offer us. We really want this to work and > while we've read as much as we can in books I've found that real > life experiences are the best teaching tools around. > I look forward to reading more of your posts and learning about all > of you. You all are truly inspirational parents and your little ones > are blessed to have you. > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hello and welcome. I don't post much anymore, mainly lurk because after 2.5 yrs. on the diet Hannah is seizure/med free. In June it will be a year that she has been off the diet. She will be 9 later this summer. Her seizures were just about all Atonic. She also did not respond to meds and after one year of trying different drugs we pushed Cleveland Clinic to let us do the diet. No doubt about it, it is difficult in the beginning. We would sometimes just sit and cry together. BUT, very much worth all the work and after several months you will realize that it just is a way of life. You won't have to think about it constantly and the results of having Hannah med free/fog free and seeing her bounce back to her old self were so much worth it. Read and read some more. If you go into this with as much info as possible, I believe that will help. Read the posts here and just keep as positive as you can about the road that lies ahead! I wish you the best with . Our church and many other churches were praying for Hannah and I know that God was in control of it all! Take care Gail > Hi everyone! I am new to this group and have spent the last week > trying to read as many posts as I could. Your messages have > motivated, inspired and empowered us. We are getting ready to start > our 23 month old son, , on the diet on May 31. He has > generalized epilepsy and for the last 10 months has had every type > of seizure. His pattern now is about 45 atonic seizures a day. We've > tried 4 medicines (Zarontin, depakane, Topamax and Keppra) and so > far the Keppra is the only drug that has showed any influence and > even that was minimal. > We are very excited to be starting this diet. I know it is difficult > so that is why I am posting...I would appreciate any words of wisdom > or advice that you can offer us. We really want this to work and > while we've read as much as we can in books I've found that real > life experiences are the best teaching tools around. > I look forward to reading more of your posts and learning about all > of you. You all are truly inspirational parents and your little ones > are blessed to have you. > Kerri Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.