Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Anja -- You have a beautiful name, welcome! Your English came across very well. From my experience on this list, it seems that those getting the ACTH have not had very good results. I would agree with your thoughts on sticking with the diet. There is much fine-tuning that can be done -- with great resources on this list. There are also a number of times when we notice similarities in some of the reasons our children have seizures -- sensitivities to foods, environmental factors, toxins, etc. -- and there's a lot of good discussion about that, too. Is your son on any meds still? My daughter's control got much better after we weaned the meds. We've also added digestive enzymes which have helped and now we're working on the remaining sleep seizures that remain -- Melatonin seems to be helping with that, although it may be too early to tell. So, you see, there are a lot of " non-medical " options. Feel free to ask questions -- we all learn a lot from each other. Good luck!--DeEtte, Mom to (6) and (5) -- 's been on the diet a year, med-free and virtually seizure-free!, sdale, AZ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 My son Felix is 4 years old and start with seizures on May 2000 after a vaccination (Masern).The doctors say it was a myoclonic-astatic Epilepsy, some doctors say it was Pseudo-Lennox. Felix has no mental retarding. He has Grand mal, myoclonic-astatic, absencen and tonic seizures. He gets a lot of medi`s, i think all we can get in Germany. Nothing helps. Felix is on diet since November 2001. At first he has the same seizures like before. But in the moment it seems to get better. Before the diet starts he had up to 5 grand mal a day. Now max. 1 a day and periods of 3 -6 days without any seizures. Our neuro told us the eeg is very bad, so he want to give up the diet and start with ACTH. But i think we should wait because he never feals so good before and he gets more and more better in the bad periods. Its not easy to decide it but I think you all have the same problems and thats the reason I´m very happy to find the list. Welcome Anja and Felix, My name is Rona and I am new to the list as well. My son Wyatt is 3 1/2 and has Infantile Spasms which is similar to Lennox-Gastaut. Wyatt has been on the diet since mid December and we have definitely seen a reduction in seizures and he is much more alert. Don't give up yet, we were about ready to start ACTH as well. Now I am defintely giving the diet every chance before we go down that road. ACTH is a very harsh treatment and we really didn't want to put Wyatt through that if we could avoid it. Don't worry about your english, you are pretty easy to understand. Rona mommy to Wyatt age 3 1/2 _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Welcome to the list Anja. If you've only been on the diet since November, then I'm not surprised you haven't seen a change in the EEG yet. If you've seen a decrease in the seizures, then the diet is working. Have you gotten him off medicines yet? That cuold be interfering with the EEG... I don't know. My son has been on the diet for almost two years now - no seizures since starting it and no medicines after we were on it for about 6 months. At one year we did an EEG... it was still abnormal (lots of activity all the time, even when he's not physically seizing) - but much better than when we started the diet - so it's what we expected. AT the two year mark we will do another EEG and at that point it should be normal and we'll start to wean off the diet. I'm glad your son is doing better on the diet -- if the seizures are decreased you may want to do fine-tuning of the diet... I noticed a BIG difference in trying the diet two times at two different hopsitals - the first time it didn't work and the second time it did.. I think because they did little things different, like restricting some foods and types of ingredients that the first hospital didn't. You'll find lots of good information here. I hope your son continues to do better on the diet! Sheri mom to Tyler, 9,keto kid 5/00 med and seizure free and Sara, 6 --- Anja Cellar wrote: > > > I am new in this list and at first i must tell you > that is noz easy for me to wrote in english. We come > from Germany. So, excuse my terrible english. I hope > you will understand it. But I am very happy for > finding a ketogenic diet list. > My son Felix is 4 years old and start with seizures > on May 2000 after a vaccination (Masern).The doctors > say it was a myoclonic-astatic Epilepsy, some > doctors say it was Pseudo-Lennox. Felix has no > mental retarding. He has Grand mal, > myoclonic-astatic, absencen and tonic seizures. He > gets a lot of medi`s, i think all we can get in > Germany. Nothing helps. Felix is on diet since > November 2001. At first he has the same seizures > like before. But in the moment it seems to get > better. Before the diet starts he had up to 5 grand > mal a day. Now max. 1 a day and periods of 3 -6 days > without any seizures. Our neuro told us the eeg is > very bad, so he want to give up the diet and start > with ACTH. But i think we should wait because he > never feals so good before and he gets more and more > better in the bad periods. Its not easy to decide it > but I think you all have the same problems and thats > the reason I´m very happy to find the list. > Again, excuse my bad english, i hope you can find > out what I mean. > > With many greetings Anja and Felix > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Diane: I am not an expert on EEG's but.... my daughter's EEG is abnormal too even though she has been seizure and med free since we started the diet 1year ago- my dietician keeps telling me it doesn't matter- " treat the child, not the EEG " . I called Hopkins and they said exactly the same thing. Truth be told, I don't think I will ever have another EEG - I am just not sure how much it tells us- but it does add a lot of stress. For all we know, we could be walking around with an abnormal EEG!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Dear Rona: I am so happy that your precious Felix is doing so much better seizure wise. As far as the EEG-now this is kind of a difficult one for us-but we have been on the diet for 19 months and our son's EEG has not gotten better-but it has not gotten any worse. We started the diet after going toxic on depakote and a horrific EEG with background abnormalities and 100-200 seizures a day. Now we are 324 days seizure free (we can not see any-and a huge improvement in quality of life) but yet we have a meeting on Tuesday with the Neuro who wants to take him off of the diet due to his EEG. My question is-and I am just wondering aloud here-so any-one who knows jump in here. What does this mean to the child's future. How as parents can we make a decision-when we see quality of life-developmental delays disappearing-happiness-seizure freedom-vs drugged, glossy eyed, violent behavior, sideeffects of unknown amounts-and possibly still a bad EEG. Our son's first EEG-the first month of his seizures was his best-the more drugs they added and combinations the worse his EEG became-so what is up with this. Sorry to ramble-but I too am confused-what is this warning the Neuros are trying to give us? Welcome Rona & Felix Diane Re: Hello! > My son Felix is 4 years old and start with seizures on May 2000 after a > vaccination (Masern).The doctors say it was a myoclonic-astatic Epilepsy, > some doctors say it was Pseudo-Lennox. Felix has no mental retarding. He has > Grand mal, myoclonic-astatic, absencen and tonic seizures. He gets a lot of > medi`s, i think all we can get in Germany. Nothing helps. Felix is on diet > since November 2001. At first he has the same seizures like before. But in > the moment it seems to get better. Before the diet starts he had up to 5 > grand mal a day. Now max. 1 a day and periods of 3 -6 days without any > seizures. Our neuro told us the eeg is very bad, so he want to give up the > diet and start with ACTH. But i think we should wait because he never feals > so good before and he gets more and more better in the bad periods. Its not > easy to decide it but I think you all have the same problems and thats the > reason I´m very happy to find the list. > > > Welcome Anja and Felix, > > My name is Rona and I am new to the list as well. My son Wyatt is 3 1/2 and > has Infantile Spasms which is similar to Lennox-Gastaut. Wyatt has been on > the diet since mid December and we have definitely seen a reduction in > seizures and he is much more alert. Don't give up yet, we were about ready > to start ACTH as well. Now I am defintely giving the diet every chance > before we go down that road. ACTH is a very harsh treatment and we really > didn't want to put Wyatt through that if we could avoid it. > Don't worry about your english, you are pretty easy to understand. > > Rona mommy to Wyatt age 3 1/2 > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > > " 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 January 24, 2002 Report Share Posted January 24, 2002 Anja, Your English is fine and you made yourself perfectly clear. Welcome to the group, and I remember how grateful I was to find it nearly two years ago. Our third child will be 5yo tomorrow and she has grand mal, complpex partial, tonic, myoclonic and absence seizures. We have tried 6 drugs but none stopped the seizures. The keto diet has reduced her seizures, but she will probably have them for ever, due to a severe malformation of her brain. She started the diet in June 2000, and has had seizures since soon after birth. I'm glad that you have seen such good improvement in Felix since starting the diet. Neurologists often think that drugs will fix the problem, but many parents here will tell you that the drugs have not helped, and often made things worse. One of the important things about the diet is to fine tune it for your individual child. There are so many things which can be varied, foods, ratios, volumes, number of meals, supplements.......etc. and each child will have his/her optimum conditions for good health and seizure control. You know Felix better than anyone, and working closely with him you will know if a drug is good for him or not. You have seen good results so far, in spite of a bad EEG, so I'm sure you would not want to give up the diet just yet. I would wait too before trying another drug. Best wishes (Hannah's mum, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 I can understand you perfectly. My son is also 4 and started having seizures in May 2001. He has been on the diet for 8 months and is not rid of all the seizures yet but I think things would be much worse if he wasnt on the diet. If you dont want to stop the diet - I wouldnt. Everyone has told me to go with my gut instinct and that is one of the best pieces of advice I think you can get. If you dont go with your instincts you will always wonder "what if". There is some improvement so the diet must be working for your son. Welcome to the group. Glad you found us - this group is a great resource! Jenn Anja Cellar wrote: I am new in this list and at first i must tell you that is noz easy for me to wrote in english. Our neuro told us the eeg is very bad, so he want to give up the diet and start with ACTH. But i think we should wait because he never feals so good before and he gets more and more better in the bad periods. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 Diane, There are doctors that treat the EEG and doctors that treat the child. We've had both. I don't think either one is wrong - it's just their approach. Regarding being on the diet for 19months and the EEG isn't any worse, I would stick to the diet longer. Is he on any meds that might be affecting his eeg? My son's EEG at 12 months on the diet was still not normal, but it was slightly improved... but the key to weaning off the diet will still be a normal EEG as I understand. So even though Hopkins does treat the child, I guess they realize the EEG is one piece of the puzzle to treating the child with seizures. It could be we go up there in May and the EEG isn't normal enough for us to be off the diet yet, even thought Tyler is seizure free, med free, and getting more and more developmentally on track. I'm definitely not an expert -- just giving my two cents worth. I hope your doctor visit goes well. Sheri --- Diane Wall wrote: > Dear Rona: > > I am so happy that your precious Felix is doing so > much better seizure wise. > As far as the EEG-now this is kind of a difficult > one for us-but we have > been on the diet for 19 months and our son's EEG has > not gotten better-but > it has not gotten any worse. We started the diet > after going toxic on > depakote and a horrific EEG with background > abnormalities and 100-200 > seizures a day. Now we are 324 days seizure free > (we can not see any-and a > huge improvement in quality of life) but yet we > have a meeting on Tuesday > with the Neuro who wants to take him off of the diet > due to his EEG. > > My question is-and I am just wondering aloud here-so > any-one who knows jump > in here. What does this mean to the child's future. > How as parents can we > make a decision-when we see quality of > life-developmental delays > disappearing-happiness-seizure freedom-vs drugged, > glossy eyed, violent > behavior, sideeffects of unknown amounts-and > possibly still a bad EEG. > > Our son's first EEG-the first month of his seizures > was his best-the more > drugs they added and combinations the worse his EEG > became-so what is up > with this. Sorry to ramble-but I too am > confused-what is this warning the > Neuros are trying to give us? > > Welcome Rona & Felix > > Diane > Re: Hello! > > > > My son Felix is 4 years old and start with > seizures on May 2000 after a > > vaccination (Masern).The doctors say it was a > myoclonic-astatic Epilepsy, > > some doctors say it was Pseudo-Lennox. Felix has > no mental retarding. He > has > > Grand mal, myoclonic-astatic, absencen and tonic > seizures. He gets a lot > of > > medi`s, i think all we can get in Germany. Nothing > helps. Felix is on diet > > since November 2001. At first he has the same > seizures like before. But in > > the moment it seems to get better. Before the diet > starts he had up to 5 > > grand mal a day. Now max. 1 a day and periods of 3 > -6 days without any > > seizures. Our neuro told us the eeg is very bad, > so he want to give up the > > diet and start with ACTH. But i think we should > wait because he never > feals > > so good before and he gets more and more better in > the bad periods. Its > not > > easy to decide it but I think you all have the > same problems and thats the > > reason I´m very happy to find the list. > > > > > > Welcome Anja and Felix, > > > > My name is Rona and I am new to the list as well. > My son Wyatt is 3 1/2 > and > > has Infantile Spasms which is similar to > Lennox-Gastaut. Wyatt has been on > > the diet since mid December and we have definitely > seen a reduction in > > seizures and he is much more alert. Don't give up > yet, we were about ready > > to start ACTH as well. Now I am defintely giving > the diet every chance > > before we go down that road. ACTH is a very harsh > treatment and we really > > didn't want to put Wyatt through that if we could > avoid it. > > Don't worry about your english, you are pretty > easy to understand. > > > > Rona mommy to Wyatt age 3 1/2 > > > > > _________________________________________________________________ > > Send and receive Hotmail on your mobile device: > http://mobile.msn.com > > > > > > > > " 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 January 25, 2002 Report Share Posted January 25, 2002 Sheri: Your two cents worth are well appreciated. I just need to find that piece. It is going on 8 years and I need to know what this all means............ Hugs Diane Re: Hello! > > > > > > > My son Felix is 4 years old and start with > > seizures on May 2000 after a > > > vaccination (Masern).The doctors say it was a > > myoclonic-astatic Epilepsy, > > > some doctors say it was Pseudo-Lennox. Felix has > > no mental retarding. He > > has > > > Grand mal, myoclonic-astatic, absencen and tonic > > seizures. He gets a lot > > of > > > medi`s, i think all we can get in Germany. Nothing > > helps. Felix is on diet > > > since November 2001. At first he has the same > > seizures like before. But in > > > the moment it seems to get better. Before the diet > > starts he had up to 5 > > > grand mal a day. Now max. 1 a day and periods of 3 > > -6 days without any > > > seizures. Our neuro told us the eeg is very bad, > > so he want to give up the > > > diet and start with ACTH. But i think we should > > wait because he never > > feals > > > so good before and he gets more and more better in > > the bad periods. Its > > not > > > easy to decide it but I think you all have the > > same problems and thats the > > > reason I´m very happy to find the list. > > > > > > > > > Welcome Anja and Felix, > > > > > > My name is Rona and I am new to the list as well. > > My son Wyatt is 3 1/2 > > and > > > has Infantile Spasms which is similar to > > Lennox-Gastaut. Wyatt has been on > > > the diet since mid December and we have definitely > > seen a reduction in > > > seizures and he is much more alert. Don't give up > > yet, we were about ready > > > to start ACTH as well. Now I am defintely giving > > the diet every chance > > > before we go down that road. ACTH is a very harsh > > treatment and we really > > > didn't want to put Wyatt through that if we could > > avoid it. > > > Don't worry about your english, you are pretty > > easy to understand. > > > > > > Rona mommy to Wyatt age 3 1/2 > > > > > > > > > _________________________________________________________________ > > > Send and receive Hotmail on your mobile device: > > http://mobile.msn.com > > > > > > > > > > > > " 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 January 25, 2002 Report Share Posted January 25, 2002 Dear : I'm sure my EEG is Abnormal (-: Thanks for your input-I will let you know what he has to say- may-be we will get educated on these things! May-be we should make a decision to not have another-I agree too much stress Hugs Diane Re: Hello! Diane: I am not an expert on EEG's but.... my daughter's EEG is abnormal too even though she has been seizure and med free since we started the diet 1year ago- my dietician keeps telling me it doesn't matter- "treat the child, not the EEG". I called Hopkins and they said exactly the same thing. Truth be told, I don't think I will ever have another EEG - I am just not sure how much it tells us- but it does add a lot of stress. For all we know, we could be walking around with an abnormal EEG!! "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...
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