Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Laurie, my little Kristan has complex partial seizures. Her unofficial diagnosis is migrating partial seizures, this is the diagnosis they give when they have ruled out everything else, but they are still trying to figure it out. I know how frustrating it is. THe diet is working for us as Kristan's seizures are down from 150-200 a day to anywhere from 5-10 a day. We are trying to fine tune right now. Kristan went through about a dozen meds that just made her worse. All tests have always come back normal. I won't even consider any new drugs as we were told in the very beginning that if a drug is going to work it will be the first or second one you try and the more failure you have with each new drug, the likelihood of another drug working is nil. But, you know your child and would know what is best, I'm sorry I don't have any advice to offer. It's hard, but don't give up hope. Satnam, mom to Kristan 14 months Keto kid since August 2003 > Does any one have a child with intractable seizures? Complex partial > or simple partial? We have been thru 8 meds and have had up and down > success with the diet. We have had med free and seizure free. But > when the seizures come back...meds are added again. This viscious > cycle almost seems to be the cause. It seems we are running out of > options. The 9th(out of 10) Neuro told us this the other day. We have > 2 neuros presently. Logan was born normal. The seizures started at 6 > months old. So, are we supposed to just stand by and watch him suffer > from the seizues and horrible meds. We are losing hope. Does anyone > have any other ideas or things that they have tried? I cannot see > when in the 21st century that we can't help him. > I am gratful for anyone's advise. > Laurie mom to Logan(2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Laurie, my little Kristan has complex partial seizures. Her unofficial diagnosis is migrating partial seizures, this is the diagnosis they give when they have ruled out everything else, but they are still trying to figure it out. I know how frustrating it is. THe diet is working for us as Kristan's seizures are down from 150-200 a day to anywhere from 5-10 a day. We are trying to fine tune right now. Kristan went through about a dozen meds that just made her worse. All tests have always come back normal. I won't even consider any new drugs as we were told in the very beginning that if a drug is going to work it will be the first or second one you try and the more failure you have with each new drug, the likelihood of another drug working is nil. But, you know your child and would know what is best, I'm sorry I don't have any advice to offer. It's hard, but don't give up hope. Satnam, mom to Kristan 14 months Keto kid since August 2003 > Does any one have a child with intractable seizures? Complex partial > or simple partial? We have been thru 8 meds and have had up and down > success with the diet. We have had med free and seizure free. But > when the seizures come back...meds are added again. This viscious > cycle almost seems to be the cause. It seems we are running out of > options. The 9th(out of 10) Neuro told us this the other day. We have > 2 neuros presently. Logan was born normal. The seizures started at 6 > months old. So, are we supposed to just stand by and watch him suffer > from the seizues and horrible meds. We are losing hope. Does anyone > have any other ideas or things that they have tried? I cannot see > when in the 21st century that we can't help him. > I am gratful for anyone's advise. > Laurie mom to Logan(2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 laurie, my daughter isabela is a child that seizes alot too. she is on vigabatrin/topomax for infantile spasms they are about 85% under control. she is on klonopin for chin twitches that are seizure activity and the diet keep those about 75% under control, felbemate for tonic clonic seizures about 1-2 a week, the diet keeps everything in check (stable that is), she also has the VNS that helps with being post ictial. i have to be so careful with the diet. she has to have ketones between 130-160 are she might have all seizure types during the day. it has been very hard finding the correct caloric intake, giving meds only at mealtimes, breaking up the meds to keep carbohydrate content low per meal. and some days she wakes up still low ketones 80 and it will be a horrible day. hundreds of seizures. it is a roller coaster, we take it one day at a time. thank god for the good days and feel so much frustration on the bad. felbemate is the best med so far we tried for tonic/clonic seizures, too high of a level increases the TC's and too low increases the seizures. we stay at a blood level around 25. we try to wean off meds and to no avail her quality of life goes in the toilet. we have tried different doses of everything. since the diet we have dropped from 5 0.5mg tablets of klonopin to under 2 0.5mg tablets of klonopin. we are on 1/2 of the dose of vigabatrin we once were. we are on about a blood level of 25 of zonegran and once was on about an 80 blood level. we wont ever be med free or seizure free but i push her and we work and work until i cant go anymore. she probably has lots of seizures daily that i dont even see but her quality of life is as best as we can get it for now. i have been there having literally thousands of seizures with her a day and i hope i wont ever have to go there again but i know i will. i take it one day at a time. my one suggestion not that it would make a huge difference but we started making success seeing an epileptologist rather than just a neurologist. he tried every med only short periods of time if it failed we were in line for what to try next, or combinations of meds he was very, very aggressive and respected my wishes because of course i know my daughter better than anyone. my daughter is still on alot of meds but they are working and i thank god for the medication every day.as long as she is smiling and she kicks alot (when she feels well) i am thrilled. please email me anytime... tcatoire@... tasha (mom to isabela 3.5 years) > >Reply-To: ketogenic >To: ketogenic >Subject: Re: Intractable seizures?Kathy >Date: Sun, 22 Feb 2004 04:30:29 -0000 > >Insight....thanks for your being there for me...BY the way we see no >more friends anymore, family hardly ever call and all we have is the >therapists..and this keto group. because no one wants to see a >seizing baby. >Logan started in Aug 03 great start. He had 6 weeks no seizures and >topamax was reduced from 475 to 300. In 1 week he started eating well >and playing better. The dietitian was unavailable. We were on our >own. We made some fine tuning and reduced med (neuro direction) and >did ok. Except with every med reduction, Logan would have seizures 2 >days later. The he was med free and seizure free. Then we really >messed up. We changed the meals to 5 instead of 4 and all went out of >control. Over those 3 months he gained 2 pounds. We started to cut >back calories but it didn't work. December was a night mare with >trips to the ER and 1 week in PICU. We restarted the diet. Still too >many calories and seizures came back. That brings us to January. We >started with a new neuro and a dietitian. Logan was put on Phenobarb >and too many calories. He gained 1 pound in 9 days and had many >seizures. We did alot of finetuning with the dietitian...No carbs in >the form of fruits and veg. He is down to 2 1/2 meals instead of >4meals. He went 10 days no seizures adn then started again. That is >where we are now. The neuroA started him on Klonopin and said he is >running out of options. It isn't working. This week he has had >diatat, ativan and noe klonopin out of desperation to stop the >seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc, >phenobarb30/45). Any thing you can think of???Thanks....Laurie > > >-- In ketogenic , kathy j irwin <kathyirwin@j...> >wrote: > > Laurie - has partial complex seizures. We went through the >drug > > store to, with no avail. The diet has been our miracle, yet we >don't > > have complete control (but ~ 95% improvement since the diet). >We've been > > on the diet for 4 years. Don't lose hope -- keep searching, trying, > > asking, but never give up. You can't. How long did you try the >diet? > > What ratios? Give us some insight. > > Kathy > > On Sun, 22 Feb 2004 02:50:53 -0000 " peteymedic1 " <peteymedic@h...> > > writes: > > > Does any one have a child with intractable seizures? Complex >partial > > > > > > or simple partial? We have been thru 8 meds and have had up and >down > > > > > > success with the diet. We have had med free and seizure free. But > > > when the seizures come back...meds are added again. This viscious > > > cycle almost seems to be the cause. It seems we are running out >of > > > options. The 9th(out of 10) Neuro told us this the other day. We > > > have > > > 2 neuros presently. Logan was born normal. The seizures started >at 6 > > > > > > months old. So, are we supposed to just stand by and watch him > > > suffer > > > from the seizues and horrible meds. We are losing hope. Does >anyone > > > > > > have any other ideas or things that they have tried? I cannot see > > > when in the 21st century that we can't help him. > > > I am gratful for anyone's advise. > > > Laurie mom to Logan(2) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 laurie, my daughter isabela is a child that seizes alot too. she is on vigabatrin/topomax for infantile spasms they are about 85% under control. she is on klonopin for chin twitches that are seizure activity and the diet keep those about 75% under control, felbemate for tonic clonic seizures about 1-2 a week, the diet keeps everything in check (stable that is), she also has the VNS that helps with being post ictial. i have to be so careful with the diet. she has to have ketones between 130-160 are she might have all seizure types during the day. it has been very hard finding the correct caloric intake, giving meds only at mealtimes, breaking up the meds to keep carbohydrate content low per meal. and some days she wakes up still low ketones 80 and it will be a horrible day. hundreds of seizures. it is a roller coaster, we take it one day at a time. thank god for the good days and feel so much frustration on the bad. felbemate is the best med so far we tried for tonic/clonic seizures, too high of a level increases the TC's and too low increases the seizures. we stay at a blood level around 25. we try to wean off meds and to no avail her quality of life goes in the toilet. we have tried different doses of everything. since the diet we have dropped from 5 0.5mg tablets of klonopin to under 2 0.5mg tablets of klonopin. we are on 1/2 of the dose of vigabatrin we once were. we are on about a blood level of 25 of zonegran and once was on about an 80 blood level. we wont ever be med free or seizure free but i push her and we work and work until i cant go anymore. she probably has lots of seizures daily that i dont even see but her quality of life is as best as we can get it for now. i have been there having literally thousands of seizures with her a day and i hope i wont ever have to go there again but i know i will. i take it one day at a time. my one suggestion not that it would make a huge difference but we started making success seeing an epileptologist rather than just a neurologist. he tried every med only short periods of time if it failed we were in line for what to try next, or combinations of meds he was very, very aggressive and respected my wishes because of course i know my daughter better than anyone. my daughter is still on alot of meds but they are working and i thank god for the medication every day.as long as she is smiling and she kicks alot (when she feels well) i am thrilled. please email me anytime... tcatoire@... tasha (mom to isabela 3.5 years) > >Reply-To: ketogenic >To: ketogenic >Subject: Re: Intractable seizures?Kathy >Date: Sun, 22 Feb 2004 04:30:29 -0000 > >Insight....thanks for your being there for me...BY the way we see no >more friends anymore, family hardly ever call and all we have is the >therapists..and this keto group. because no one wants to see a >seizing baby. >Logan started in Aug 03 great start. He had 6 weeks no seizures and >topamax was reduced from 475 to 300. In 1 week he started eating well >and playing better. The dietitian was unavailable. We were on our >own. We made some fine tuning and reduced med (neuro direction) and >did ok. Except with every med reduction, Logan would have seizures 2 >days later. The he was med free and seizure free. Then we really >messed up. We changed the meals to 5 instead of 4 and all went out of >control. Over those 3 months he gained 2 pounds. We started to cut >back calories but it didn't work. December was a night mare with >trips to the ER and 1 week in PICU. We restarted the diet. Still too >many calories and seizures came back. That brings us to January. We >started with a new neuro and a dietitian. Logan was put on Phenobarb >and too many calories. He gained 1 pound in 9 days and had many >seizures. We did alot of finetuning with the dietitian...No carbs in >the form of fruits and veg. He is down to 2 1/2 meals instead of >4meals. He went 10 days no seizures adn then started again. That is >where we are now. The neuroA started him on Klonopin and said he is >running out of options. It isn't working. This week he has had >diatat, ativan and noe klonopin out of desperation to stop the >seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc, >phenobarb30/45). Any thing you can think of???Thanks....Laurie > > >-- In ketogenic , kathy j irwin <kathyirwin@j...> >wrote: > > Laurie - has partial complex seizures. We went through the >drug > > store to, with no avail. The diet has been our miracle, yet we >don't > > have complete control (but ~ 95% improvement since the diet). >We've been > > on the diet for 4 years. Don't lose hope -- keep searching, trying, > > asking, but never give up. You can't. How long did you try the >diet? > > What ratios? Give us some insight. > > Kathy > > On Sun, 22 Feb 2004 02:50:53 -0000 " peteymedic1 " <peteymedic@h...> > > writes: > > > Does any one have a child with intractable seizures? Complex >partial > > > > > > or simple partial? We have been thru 8 meds and have had up and >down > > > > > > success with the diet. We have had med free and seizure free. But > > > when the seizures come back...meds are added again. This viscious > > > cycle almost seems to be the cause. It seems we are running out >of > > > options. The 9th(out of 10) Neuro told us this the other day. We > > > have > > > 2 neuros presently. Logan was born normal. The seizures started >at 6 > > > > > > months old. So, are we supposed to just stand by and watch him > > > suffer > > > from the seizues and horrible meds. We are losing hope. Does >anyone > > > > > > have any other ideas or things that they have tried? I cannot see > > > when in the 21st century that we can't help him. > > > I am gratful for anyone's advise. > > > Laurie mom to Logan(2) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 laurie, my daughter isabela is a child that seizes alot too. she is on vigabatrin/topomax for infantile spasms they are about 85% under control. she is on klonopin for chin twitches that are seizure activity and the diet keep those about 75% under control, felbemate for tonic clonic seizures about 1-2 a week, the diet keeps everything in check (stable that is), she also has the VNS that helps with being post ictial. i have to be so careful with the diet. she has to have ketones between 130-160 are she might have all seizure types during the day. it has been very hard finding the correct caloric intake, giving meds only at mealtimes, breaking up the meds to keep carbohydrate content low per meal. and some days she wakes up still low ketones 80 and it will be a horrible day. hundreds of seizures. it is a roller coaster, we take it one day at a time. thank god for the good days and feel so much frustration on the bad. felbemate is the best med so far we tried for tonic/clonic seizures, too high of a level increases the TC's and too low increases the seizures. we stay at a blood level around 25. we try to wean off meds and to no avail her quality of life goes in the toilet. we have tried different doses of everything. since the diet we have dropped from 5 0.5mg tablets of klonopin to under 2 0.5mg tablets of klonopin. we are on 1/2 of the dose of vigabatrin we once were. we are on about a blood level of 25 of zonegran and once was on about an 80 blood level. we wont ever be med free or seizure free but i push her and we work and work until i cant go anymore. she probably has lots of seizures daily that i dont even see but her quality of life is as best as we can get it for now. i have been there having literally thousands of seizures with her a day and i hope i wont ever have to go there again but i know i will. i take it one day at a time. my one suggestion not that it would make a huge difference but we started making success seeing an epileptologist rather than just a neurologist. he tried every med only short periods of time if it failed we were in line for what to try next, or combinations of meds he was very, very aggressive and respected my wishes because of course i know my daughter better than anyone. my daughter is still on alot of meds but they are working and i thank god for the medication every day.as long as she is smiling and she kicks alot (when she feels well) i am thrilled. please email me anytime... tcatoire@... tasha (mom to isabela 3.5 years) > >Reply-To: ketogenic >To: ketogenic >Subject: Re: Intractable seizures?Kathy >Date: Sun, 22 Feb 2004 04:30:29 -0000 > >Insight....thanks for your being there for me...BY the way we see no >more friends anymore, family hardly ever call and all we have is the >therapists..and this keto group. because no one wants to see a >seizing baby. >Logan started in Aug 03 great start. He had 6 weeks no seizures and >topamax was reduced from 475 to 300. In 1 week he started eating well >and playing better. The dietitian was unavailable. We were on our >own. We made some fine tuning and reduced med (neuro direction) and >did ok. Except with every med reduction, Logan would have seizures 2 >days later. The he was med free and seizure free. Then we really >messed up. We changed the meals to 5 instead of 4 and all went out of >control. Over those 3 months he gained 2 pounds. We started to cut >back calories but it didn't work. December was a night mare with >trips to the ER and 1 week in PICU. We restarted the diet. Still too >many calories and seizures came back. That brings us to January. We >started with a new neuro and a dietitian. Logan was put on Phenobarb >and too many calories. He gained 1 pound in 9 days and had many >seizures. We did alot of finetuning with the dietitian...No carbs in >the form of fruits and veg. He is down to 2 1/2 meals instead of >4meals. He went 10 days no seizures adn then started again. That is >where we are now. The neuroA started him on Klonopin and said he is >running out of options. It isn't working. This week he has had >diatat, ativan and noe klonopin out of desperation to stop the >seizures. Ketones are 40-80-160 and sg is 1000-1030. (VIT,calmgzinc, >phenobarb30/45). Any thing you can think of???Thanks....Laurie > > >-- In ketogenic , kathy j irwin <kathyirwin@j...> >wrote: > > Laurie - has partial complex seizures. We went through the >drug > > store to, with no avail. The diet has been our miracle, yet we >don't > > have complete control (but ~ 95% improvement since the diet). >We've been > > on the diet for 4 years. Don't lose hope -- keep searching, trying, > > asking, but never give up. You can't. How long did you try the >diet? > > What ratios? Give us some insight. > > Kathy > > On Sun, 22 Feb 2004 02:50:53 -0000 " peteymedic1 " <peteymedic@h...> > > writes: > > > Does any one have a child with intractable seizures? Complex >partial > > > > > > or simple partial? We have been thru 8 meds and have had up and >down > > > > > > success with the diet. We have had med free and seizure free. But > > > when the seizures come back...meds are added again. This viscious > > > cycle almost seems to be the cause. It seems we are running out >of > > > options. The 9th(out of 10) Neuro told us this the other day. We > > > have > > > 2 neuros presently. Logan was born normal. The seizures started >at 6 > > > > > > months old. So, are we supposed to just stand by and watch him > > > suffer > > > from the seizues and horrible meds. We are losing hope. Does >anyone > > > > > > have any other ideas or things that they have tried? I cannot see > > > when in the 21st century that we can't help him. > > > I am gratful for anyone's advise. > > > Laurie mom to Logan(2) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Laurie, I don't know how much this applies to your situation, but every time we feel like we are losing the ground we have gained we go back to where the going was good. Twice in the last 6 months we lost ground when we tried weaning off the diet. Both times we went back to what we were doing when things were going well. Recently we have had more seizure activity. We analysed any changes and went back to what we were doing when things were better. We have practiced this with calorie changes, food changes, and any other changes. It hasn't failed us yet. There was a time when we weaned all meds. The month after the last med was weaned resulted in severe tonic clonic seizures that caused our daughter to be paralysed on her left side. Before the last drop her seizures were improving. We went back to the amount she was taking before the final drop and all improved. Over a year later we still haven't been able to wean that last drop but she has been able to enjoy 80% of the last year seizure free. You have shared that Logan has had some times that were seizure free. I would look seriously at those times and adjust accordingly. Rhonda (mom to Shan, age 9, ketokid 2 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Laurie, I don't know how much this applies to your situation, but every time we feel like we are losing the ground we have gained we go back to where the going was good. Twice in the last 6 months we lost ground when we tried weaning off the diet. Both times we went back to what we were doing when things were going well. Recently we have had more seizure activity. We analysed any changes and went back to what we were doing when things were better. We have practiced this with calorie changes, food changes, and any other changes. It hasn't failed us yet. There was a time when we weaned all meds. The month after the last med was weaned resulted in severe tonic clonic seizures that caused our daughter to be paralysed on her left side. Before the last drop her seizures were improving. We went back to the amount she was taking before the final drop and all improved. Over a year later we still haven't been able to wean that last drop but she has been able to enjoy 80% of the last year seizure free. You have shared that Logan has had some times that were seizure free. I would look seriously at those times and adjust accordingly. Rhonda (mom to Shan, age 9, ketokid 2 years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Laurie, I don't know how much this applies to your situation, but every time we feel like we are losing the ground we have gained we go back to where the going was good. Twice in the last 6 months we lost ground when we tried weaning off the diet. Both times we went back to what we were doing when things were going well. Recently we have had more seizure activity. We analysed any changes and went back to what we were doing when things were better. We have practiced this with calorie changes, food changes, and any other changes. It hasn't failed us yet. There was a time when we weaned all meds. The month after the last med was weaned resulted in severe tonic clonic seizures that caused our daughter to be paralysed on her left side. Before the last drop her seizures were improving. We went back to the amount she was taking before the final drop and all improved. Over a year later we still haven't been able to wean that last drop but she has been able to enjoy 80% of the last year seizure free. You have shared that Logan has had some times that were seizure free. I would look seriously at those times and adjust accordingly. Rhonda (mom to Shan, age 9, ketokid 2 years) Quote Link to comment Share on other sites More sharing options...
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