Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hello I am thinking of starting my son on the Ketogenic Diet. I have a very good friend that has had her son on the diet for a few years and has done extremly well. My son is 21 months old... He has many other health issues. Which is why we are just exploring at this time. We are not sure if the Ketogenic Diet will interfer with his other health issues. He has many myotonic seizures a day. Some days we can count 75 in 5 minutes. They can be very weak or very strong . Most times both his arms and his right leg are extended fully. We have tried the meds and keep chasing ourselves. We increase the meds and he is fine for about 7-10 days and then it started all over again. When he starts to have the cluster of seizures he has a sloshing noise that he dose. When he does this he gets a lot of gas in his tummy. We begin to have proplems with his feeding. He is g-tube fed. There are days that he seems to get stuck into seizure mode and cannot get out of it. Is there an other parent in the group that their child not only has seizures but also has Diabetes Insibidus? This is not surgar Diabetes it is very different. My son was born with no pitutary gland . So he has no natural hormones. Also is there a parent in the group that is having their child follow at Sick Kids in Toronto? If so I would like to connect with you and chat.. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Hi (sorry,could not find your name) My son is seen by doctors in Sick kids.Our neuro is Dr.Donner,Currently my son on keto diet ano is also followed by DR.Curtis(ketogenic diet specialist) and Christiana Lui (dietitian) Who do you see at Sick kids? Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23 2004 > Hello > > I am thinking of starting my son on the Ketogenic Diet. I have a > very good friend that has had her son on the diet for a few years > and has done extremly well. > > My son is 21 months old... He has many other health issues. Which is > why we are just exploring at this time. We are not sure if the > Ketogenic Diet will interfer with his other health issues. > > He has many myotonic seizures a day. Some days we can count 75 in 5 > minutes. They can be very weak or very strong . Most times both his > arms and his right leg are extended fully. > > We have tried the meds and keep chasing ourselves. We increase the > meds and he is fine for about 7-10 days and then it started all over > again. > > When he starts to have the cluster of seizures he has a sloshing > noise that he dose. When he does this he gets a lot of gas in his > tummy. We begin to have proplems with his feeding. He is g-tube fed. > > There are days that he seems to get stuck into seizure mode and > cannot get out of it. > > Is there an other parent in the group that their child not only has > seizures but also has Diabetes Insibidus? This is not surgar > Diabetes it is very different. My son was born with no pitutary > gland . So he has no natural hormones. > > Also is there a parent in the group that is having their child > follow at Sick Kids in Toronto? > > If so I would like to connect with you and chat.. > > Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2004 Report Share Posted September 18, 2004 > > Hello > > > > I am thinking of starting my son on the Ketogenic Diet. I have a > > very good friend that has had her son on the diet for a few years > > and has done extremly well. > > > > My son is 21 months old... He has many other health issues. Which > is > > why we are just exploring at this time. We are not sure if the > > Ketogenic Diet will interfer with his other health issues. > > > > He has many myotonic seizures a day. Some days we can count 75 in > 5 > > minutes. They can be very weak or very strong . Most times both > his > > arms and his right leg are extended fully. > > > > We have tried the meds and keep chasing ourselves. We increase the > > meds and he is fine for about 7-10 days and then it started all > over > > again. > > > > When he starts to have the cluster of seizures he has a sloshing > > noise that he dose. When he does this he gets a lot of gas in his > > tummy. We begin to have proplems with his feeding. He is g-tube > fed. > > > > There are days that he seems to get stuck into seizure mode and > > cannot get out of it. > > > > Is there an other parent in the group that their child not only > has > > seizures but also has Diabetes Insibidus? This is not surgar > > Diabetes it is very different. My son was born with no pitutary > > gland . So he has no natural hormones. > > > > Also is there a parent in the group that is having their child > > follow at Sick Kids in Toronto? > > > > If so I would like to connect with you and chat.. > > > > Thanks Thanks for your reply I would like to chat with you. I am not at this time followed at SK for his other health issues. Dure to all his other health issues I would like to be followed for the bigging of the deit at SK. Our hospital only has a Deititian that follow the keto kids no MD. Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Hi Doris If you have any questions ,please do not hesistate to ask.I like Sick Kids hospital and its professionals.I also like our neuro as she is very nice lady .Where are you in Canada? We live near to Sudbury ON, but planning to move Natasha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 > Hi Doris > If you have any questions ,please do not hesistate to ask.I like > Sick Kids hospital and its professionals.I also like our neuro as > she is very nice lady .Where are you in Canada? We live near to > Sudbury ON, but planning to move > > Natasha Hello Natasha I live in Ottawa. I would love to connect with you and chat.. When you started your son on keto deit how long did you have to stay in hospital.. You live a good distance from the hosptial. Do you have to go to SK often? Who follows your son in Sudbury for the deit? What kind of seizures is your son having? What made you try to do the keto deit? Doris 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.