Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Welcome! You are at the right place. This group is a wealth of experience and expertise. Don't fret about the diet. You will do fine. It is not rocket science. You will learn to " read " your child's behavior like never before! AND the diet works. For many of us it was a last resort, instead of a first, unfortunately. The diet works best without meds for most children. Your son will probably begin weaning off the drugs once he is on the diet. Are the drugs working? If not it is too bad the wean didn't happen before the diet. Keep reading. You will store the knowledge you gain for further reference, should you have to do any tweeking to the diet as you go along. There are single parents on the list, but you will do best to have a support system in place, whether it be friends or family. But that is for life. None of us needs to be alone. Welcome! . dreamerofluna dreamerofluna@...> wrote: Hi everyone!! I am so grateful to have found you all! My son will be starting the diet on Monday. I am terrified to say the least! My son's name is Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We got the diagnosis in March but he has been having seizures since December. So far, thank God, the myoclonic seizures are all that he has. We are currently on Keppra (500mg) and Depakene (750mg). Is it normal to start the diet while on the meds? My husband is in the Army and is preparing for his 4th deployment to the middle east. This time will be for a year. So I will doing most of this alone. Is anyone else in this situation? I am sure that I will have tons of questions for you guys as we start on this journey. I know that it is going to be hard but I will do ANYTHING to help my baby. Glad to meet everyone!! " 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 October 15, 2004 Report Share Posted October 15, 2004 Welcome! You are at the right place. This group is a wealth of experience and expertise. Don't fret about the diet. You will do fine. It is not rocket science. You will learn to " read " your child's behavior like never before! AND the diet works. For many of us it was a last resort, instead of a first, unfortunately. The diet works best without meds for most children. Your son will probably begin weaning off the drugs once he is on the diet. Are the drugs working? If not it is too bad the wean didn't happen before the diet. Keep reading. You will store the knowledge you gain for further reference, should you have to do any tweeking to the diet as you go along. There are single parents on the list, but you will do best to have a support system in place, whether it be friends or family. But that is for life. None of us needs to be alone. Welcome! . dreamerofluna dreamerofluna@...> wrote: Hi everyone!! I am so grateful to have found you all! My son will be starting the diet on Monday. I am terrified to say the least! My son's name is Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We got the diagnosis in March but he has been having seizures since December. So far, thank God, the myoclonic seizures are all that he has. We are currently on Keppra (500mg) and Depakene (750mg). Is it normal to start the diet while on the meds? My husband is in the Army and is preparing for his 4th deployment to the middle east. This time will be for a year. So I will doing most of this alone. Is anyone else in this situation? I am sure that I will have tons of questions for you guys as we start on this journey. I know that it is going to be hard but I will do ANYTHING to help my baby. Glad to meet everyone!! " 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 October 15, 2004 Report Share Posted October 15, 2004 Welcome! You are at the right place. This group is a wealth of experience and expertise. Don't fret about the diet. You will do fine. It is not rocket science. You will learn to " read " your child's behavior like never before! AND the diet works. For many of us it was a last resort, instead of a first, unfortunately. The diet works best without meds for most children. Your son will probably begin weaning off the drugs once he is on the diet. Are the drugs working? If not it is too bad the wean didn't happen before the diet. Keep reading. You will store the knowledge you gain for further reference, should you have to do any tweeking to the diet as you go along. There are single parents on the list, but you will do best to have a support system in place, whether it be friends or family. But that is for life. None of us needs to be alone. Welcome! . dreamerofluna dreamerofluna@...> wrote: Hi everyone!! I am so grateful to have found you all! My son will be starting the diet on Monday. I am terrified to say the least! My son's name is Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We got the diagnosis in March but he has been having seizures since December. So far, thank God, the myoclonic seizures are all that he has. We are currently on Keppra (500mg) and Depakene (750mg). Is it normal to start the diet while on the meds? My husband is in the Army and is preparing for his 4th deployment to the middle east. This time will be for a year. So I will doing most of this alone. Is anyone else in this situation? I am sure that I will have tons of questions for you guys as we start on this journey. I know that it is going to be hard but I will do ANYTHING to help my baby. Glad to meet everyone!! " 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 October 17, 2004 Report Share Posted October 17, 2004 Welcome! We are relatively new to the group and the diet as well. You've found the right spot for a lot of very helpful information. The parents on this site have been a terrific source of information and support for us. And it sounds like Jordan has had some similar experiences to our daughter, . , who turned 4 in April, had her first T/C seizure in December and later developed myoclonic seizures in March 2004. She began the diet on 7-19-04 and was also taking Keppra (125mg) and Depakote (1125mg). Due to elevated liver enzymes, we began a " fast " wean of the depakote (ie 1 pill/week and then 1pill/2 weeks for the last 3 pills). She currently has been off Depakote for 2 weeks and we plan to begin weaning the Keppra in the next week. And yes, the diet is working--she's been 100% seizure free this entire time. I'm not sure how much info you already have, so will just write about of few things that come to mind--please ask for any more info you may need. First, check out the files section regarding diet initiation-- some great info there that really helped us. Also, we have found the diet to be very managable. The biggest trick to keeping things running smoothly is to stay organized. Additionally, there have been some fairly recent posts regarding drug interactions and the diet-- e.g. depakote could interfere with the diet and the ability of the child to maintin sufficient ketone levels. One last thought, like most things, the first weeks are the hardest and you'll have moments where you just need to catch your breath. But, it does get easier! Good luck to you and Jordan! We'll be thinking of you! ne and Mike > > Hi everyone!! > > I am so grateful to have found you all! My son will be starting the > diet on Monday. I am terrified to say the least! My son's name is > Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We > got the diagnosis in March but he has been having seizures since > December. So far, thank God, the myoclonic seizures are all that he > has. We are currently on Keppra (500mg) and Depakene (750mg). Is it > normal to start the diet while on the meds? > My husband is in the Army and is preparing for his 4th deployment to > the middle east. This time will be for a year. So I will doing most > of this alone. Is anyone else in this situation? > I am sure that I will have tons of questions for you guys as we > start on this journey. I know that it is going to be hard but I will > do ANYTHING to help my baby. Glad to meet everyone!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Welcome! We are relatively new to the group and the diet as well. You've found the right spot for a lot of very helpful information. The parents on this site have been a terrific source of information and support for us. And it sounds like Jordan has had some similar experiences to our daughter, . , who turned 4 in April, had her first T/C seizure in December and later developed myoclonic seizures in March 2004. She began the diet on 7-19-04 and was also taking Keppra (125mg) and Depakote (1125mg). Due to elevated liver enzymes, we began a " fast " wean of the depakote (ie 1 pill/week and then 1pill/2 weeks for the last 3 pills). She currently has been off Depakote for 2 weeks and we plan to begin weaning the Keppra in the next week. And yes, the diet is working--she's been 100% seizure free this entire time. I'm not sure how much info you already have, so will just write about of few things that come to mind--please ask for any more info you may need. First, check out the files section regarding diet initiation-- some great info there that really helped us. Also, we have found the diet to be very managable. The biggest trick to keeping things running smoothly is to stay organized. Additionally, there have been some fairly recent posts regarding drug interactions and the diet-- e.g. depakote could interfere with the diet and the ability of the child to maintin sufficient ketone levels. One last thought, like most things, the first weeks are the hardest and you'll have moments where you just need to catch your breath. But, it does get easier! Good luck to you and Jordan! We'll be thinking of you! ne and Mike > > Hi everyone!! > > I am so grateful to have found you all! My son will be starting the > diet on Monday. I am terrified to say the least! My son's name is > Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We > got the diagnosis in March but he has been having seizures since > December. So far, thank God, the myoclonic seizures are all that he > has. We are currently on Keppra (500mg) and Depakene (750mg). Is it > normal to start the diet while on the meds? > My husband is in the Army and is preparing for his 4th deployment to > the middle east. This time will be for a year. So I will doing most > of this alone. Is anyone else in this situation? > I am sure that I will have tons of questions for you guys as we > start on this journey. I know that it is going to be hard but I will > do ANYTHING to help my baby. Glad to meet everyone!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Welcome! We are relatively new to the group and the diet as well. You've found the right spot for a lot of very helpful information. The parents on this site have been a terrific source of information and support for us. And it sounds like Jordan has had some similar experiences to our daughter, . , who turned 4 in April, had her first T/C seizure in December and later developed myoclonic seizures in March 2004. She began the diet on 7-19-04 and was also taking Keppra (125mg) and Depakote (1125mg). Due to elevated liver enzymes, we began a " fast " wean of the depakote (ie 1 pill/week and then 1pill/2 weeks for the last 3 pills). She currently has been off Depakote for 2 weeks and we plan to begin weaning the Keppra in the next week. And yes, the diet is working--she's been 100% seizure free this entire time. I'm not sure how much info you already have, so will just write about of few things that come to mind--please ask for any more info you may need. First, check out the files section regarding diet initiation-- some great info there that really helped us. Also, we have found the diet to be very managable. The biggest trick to keeping things running smoothly is to stay organized. Additionally, there have been some fairly recent posts regarding drug interactions and the diet-- e.g. depakote could interfere with the diet and the ability of the child to maintin sufficient ketone levels. One last thought, like most things, the first weeks are the hardest and you'll have moments where you just need to catch your breath. But, it does get easier! Good luck to you and Jordan! We'll be thinking of you! ne and Mike > > Hi everyone!! > > I am so grateful to have found you all! My son will be starting the > diet on Monday. I am terrified to say the least! My son's name is > Jordan and he is a beautiful 3 y/o who has Myoclonic Epilepsy. We > got the diagnosis in March but he has been having seizures since > December. So far, thank God, the myoclonic seizures are all that he > has. We are currently on Keppra (500mg) and Depakene (750mg). Is it > normal to start the diet while on the meds? > My husband is in the Army and is preparing for his 4th deployment to > the middle east. This time will be for a year. So I will doing most > of this alone. Is anyone else in this situation? > I am sure that I will have tons of questions for you guys as we > start on this journey. I know that it is going to be hard but I will > do ANYTHING to help my baby. Glad to meet everyone!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Hi Jordans mum, already in your favour is you are starting the diet whilst Jordan is young and not been on meds for years and years. The meds weaning will be hard, some start with the drugs , some without, different hospitals do different things. Look forward to seeing how well Jordan does.Its a rocky road bit hang in there, Nicola, UK, mum to Mathew, nearly 8, myoclonic epilepsy, MCT ketogenic diet for 1 year, drug free bit not sezure free at this time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 I think that the earlier the better with the diet. I wish we had started before all of the med trials which took about a year. The diet is worth a try. If it works-its life changing. If it doesn't-you know you tried! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 I think that the earlier the better with the diet. I wish we had started before all of the med trials which took about a year. The diet is worth a try. If it works-its life changing. If it doesn't-you know you tried! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 I think that the earlier the better with the diet. I wish we had started before all of the med trials which took about a year. The diet is worth a try. If it works-its life changing. If it doesn't-you know you tried! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Hello and Welcome! I am Cammie, mom to 8 yrs. old. She's been on the diet for 14 months--seizure free. I hope the diet initiation goes very smoothly for you and Jordan. The diet seems to work well for myoclonic seizures--I hope it will be true for you. Different keto teams do different things with regard to mixing meds and the diet. Some teams want the child to be seizure free before stopping meds. We really wanted to get rid of the drugs and luckily, so did our team, so we stopped depakote after 12 hrs. in good ketosis. She was having horrible side effects and we saw that change within another 12 hrs of her last dose. Most AEDs do not mix well with the diet, depakote being one of the worst. If you do stay on it, I would suggest you check blood levels 3-4 wks. post initiation or sooner if you have problems. I want to say thank you to your husband and your family for the sacrifices you make because of his service in the armed forces. We have a military base near us and I must say that military families are amazing to me--especially the moms who carry on when their husbands are away from home for a long time. The wives here have a great support system among themselves. We " locals " try to help out when we can, too. I hope you will find something similar. You will get a routine going as you get used to the diet. Please do post your questions here--you will get a lot of support. I felt like such a klutz in the beginning but with the support of a great dietician and the folks here, I figured it out... you will too! Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Hello and Welcome! I am Cammie, mom to 8 yrs. old. She's been on the diet for 14 months--seizure free. I hope the diet initiation goes very smoothly for you and Jordan. The diet seems to work well for myoclonic seizures--I hope it will be true for you. Different keto teams do different things with regard to mixing meds and the diet. Some teams want the child to be seizure free before stopping meds. We really wanted to get rid of the drugs and luckily, so did our team, so we stopped depakote after 12 hrs. in good ketosis. She was having horrible side effects and we saw that change within another 12 hrs of her last dose. Most AEDs do not mix well with the diet, depakote being one of the worst. If you do stay on it, I would suggest you check blood levels 3-4 wks. post initiation or sooner if you have problems. I want to say thank you to your husband and your family for the sacrifices you make because of his service in the armed forces. We have a military base near us and I must say that military families are amazing to me--especially the moms who carry on when their husbands are away from home for a long time. The wives here have a great support system among themselves. We " locals " try to help out when we can, too. I hope you will find something similar. You will get a routine going as you get used to the diet. Please do post your questions here--you will get a lot of support. I felt like such a klutz in the beginning but with the support of a great dietician and the folks here, I figured it out... you will too! Cammie Quote Link to comment Share on other sites More sharing options...
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