Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Sorry to hear about Logan So many have mentioned sending Spinal fluid to " Baylor " ?? Has Metabolic testing been done?? Have you talked to some parents on the SCD-Pattis daughter, Katera, seems to be doing better on this diet It is so frustrating--in todays age of technology--seizures are still a mystery and treatments are " trial & error " -- Sending you our prayers Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Sorry to hear about Logan So many have mentioned sending Spinal fluid to " Baylor " ?? Has Metabolic testing been done?? Have you talked to some parents on the SCD-Pattis daughter, Katera, seems to be doing better on this diet It is so frustrating--in todays age of technology--seizures are still a mystery and treatments are " trial & error " -- Sending you our prayers Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 I guess most of the people who are trying keto are doing it b/c they have intractable seizures. My daughter's seizures have never been totally controlled with meds. Fortunately, her seizure frequency is not as terrible as it could be (one every 5-10 days pre-diet), but like all parents we would love to attain seizure-free status. I think all we can do as parents is keep asking questions and keep seeking answers. For us, we are hoping that the diet will be our answer. Even if it does not make Langan seizure-free, if we can get the same seizure frequency without meds then the rigors of the diet are worth it. I know how frustrating this can be. You want to make it better and feel so helpless. Believe me, I know. But it is clear how much you love your son. Hang in there! , mom to Langan, 19 months old and keto kid since 11/03 Intractable seizures? 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) " 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 February 21, 2004 Report Share Posted February 21, 2004 I guess most of the people who are trying keto are doing it b/c they have intractable seizures. My daughter's seizures have never been totally controlled with meds. Fortunately, her seizure frequency is not as terrible as it could be (one every 5-10 days pre-diet), but like all parents we would love to attain seizure-free status. I think all we can do as parents is keep asking questions and keep seeking answers. For us, we are hoping that the diet will be our answer. Even if it does not make Langan seizure-free, if we can get the same seizure frequency without meds then the rigors of the diet are worth it. I know how frustrating this can be. You want to make it better and feel so helpless. Believe me, I know. But it is clear how much you love your son. Hang in there! , mom to Langan, 19 months old and keto kid since 11/03 Intractable seizures? 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) " 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 February 21, 2004 Report Share Posted February 21, 2004 What's his diagnosis again, Laurie? Intractable seizures? 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 21, 2004 Report Share Posted February 21, 2004 Hi Laurie This sounds so much like , except that her sz did not start until she was 9. She was initially diagnosed with complex partial sz and put on Tegretol. 4 months later she had ESES as well (probably aggravated by the Tegretol). We have tried so many drugs I've lost count. None terribly effective, most caused sz to be worse. The VNS helped for a short period, then lost effectiveness. also has many food sensitivities that can trigger sz so she has a very restricted diet. The diet has worked better than anything else, but we are currently experiencing problems with bad sz unfortunately. I think this is due to reducing Lamictal too quickly. I reduced by 6mg each 3 to 4 days because she seemed to handle the withdrawal with no sz! She went from having many sz the day before reducing, to 0 sz for 29 days once I started the reduction. But now the s*** has hit the fan! The neuros always seem to want to add meds when finetuning the diet is what is really needed. I am really motivated here, because meds make worse. Could there be any foods triggering Logans sz? Have you tried eliminating dairy? gluten? eggs? peanuts? to see if there is any improvement. They are things that reacts to. MCT oil and Vit C supplements also caused problems. Many foods can cause problems esp on the diet. I know some kids react to carrots and broccoli. Good luck Jill At 10:50 AM 22/02/2004, you wrote: >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) > > > > > " 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 February 21, 2004 Report Share Posted February 21, 2004 Hi Laurie This sounds so much like , except that her sz did not start until she was 9. She was initially diagnosed with complex partial sz and put on Tegretol. 4 months later she had ESES as well (probably aggravated by the Tegretol). We have tried so many drugs I've lost count. None terribly effective, most caused sz to be worse. The VNS helped for a short period, then lost effectiveness. also has many food sensitivities that can trigger sz so she has a very restricted diet. The diet has worked better than anything else, but we are currently experiencing problems with bad sz unfortunately. I think this is due to reducing Lamictal too quickly. I reduced by 6mg each 3 to 4 days because she seemed to handle the withdrawal with no sz! She went from having many sz the day before reducing, to 0 sz for 29 days once I started the reduction. But now the s*** has hit the fan! The neuros always seem to want to add meds when finetuning the diet is what is really needed. I am really motivated here, because meds make worse. Could there be any foods triggering Logans sz? Have you tried eliminating dairy? gluten? eggs? peanuts? to see if there is any improvement. They are things that reacts to. MCT oil and Vit C supplements also caused problems. Many foods can cause problems esp on the diet. I know some kids react to carrots and broccoli. Good luck Jill At 10:50 AM 22/02/2004, you wrote: >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) > > > > > " 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 February 21, 2004 Report Share Posted February 21, 2004 Hi Laurie, My heart goes out to you and your family, and especially little Logan. I guess any of us would consider our children's seizures to be intractable. No, I don't think you should accept that this is the way things are and always will be. We have to have hope, and that is what keeps us fighting for our little ones. This board is full of stories about children who have defied medical experts....either in their wonderful recoveries or in their horrible reaction to meds. I know that as much as meds can help, sometimes they make things much worse. It would be wonderful to see what Logan could do without meds and optimizing the diet, but I know from your past posts that his seizures are life threatening at times....which makes any experimentation terrifying I'm sure. Have any of the neuros given you any mention of anything else besides the meds? Surgery, Vagus Nerve Stimulator, steroids ? I'm sorry I don't have any advice for you, I just wanted you to know that you are all in my thoughts and prayers. I hope Logan turns a corner very soon. Glenna -- In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > 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 21, 2004 Report Share Posted February 21, 2004 Hi Laurie, My heart goes out to you and your family, and especially little Logan. I guess any of us would consider our children's seizures to be intractable. No, I don't think you should accept that this is the way things are and always will be. We have to have hope, and that is what keeps us fighting for our little ones. This board is full of stories about children who have defied medical experts....either in their wonderful recoveries or in their horrible reaction to meds. I know that as much as meds can help, sometimes they make things much worse. It would be wonderful to see what Logan could do without meds and optimizing the diet, but I know from your past posts that his seizures are life threatening at times....which makes any experimentation terrifying I'm sure. Have any of the neuros given you any mention of anything else besides the meds? Surgery, Vagus Nerve Stimulator, steroids ? I'm sorry I don't have any advice for you, I just wanted you to know that you are all in my thoughts and prayers. I hope Logan turns a corner very soon. Glenna -- In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > 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 21, 2004 Report Share Posted February 21, 2004 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 " 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 21, 2004 Report Share Posted February 21, 2004 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 " 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 21, 2004 Report Share Posted February 21, 2004 Laurie, I, too, wish you could try the diet med free. (excepting EMG (only) meds if he does have a long seizures or clusters) I remember there was a time when Logan was med free... and if I remember correctly, seizure free for some of that time, too. That just gives me such hope that it IS possible to adjust the diet to Logan's specific needs. Are you with Boston Children's now? I've heard such good things about the neuro and dietician there. Will they help you??? Have you expressed your concerns about the meds. and your definite desire to get off them... at least long enough to give the diet a good try alone? I know that sounds like a silly question, but when we interviewed with our keto team, they were being " careful " about telling us that they really like to get off meds ASAP. When we just came right out and said we hated the meds, they didn't work and WE WANT OFF, they were very happy. Evidently, their experience is that many parents don't want to dc the meds right away. They sort of have to talk them into that part... we went prepared to present our case FOR getting off the meds. and prepared to hear all the rhetoric about the diet protocol... Looking back, it was actually quite amusing. Maybe I have a block in my brain somewhere... but I can't understand why, if a child was seizing on meds, then started the diet and is still seizing, why it would be so bad to wean the meds and try the diet alone. The worst that could happen is that the child would still be seizing on the diet alone. At least you would know that the meds weren't interfering with the diet and/or your fine tuning attempts at the diet. When I joined this group, Logan was doing so well. It would be great for him to get back there again. I definitely think there is hope... and his seizures don't have to be " intractible " forever. Cammie > 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 21, 2004 Report Share Posted February 21, 2004 Laurie, I, too, wish you could try the diet med free. (excepting EMG (only) meds if he does have a long seizures or clusters) I remember there was a time when Logan was med free... and if I remember correctly, seizure free for some of that time, too. That just gives me such hope that it IS possible to adjust the diet to Logan's specific needs. Are you with Boston Children's now? I've heard such good things about the neuro and dietician there. Will they help you??? Have you expressed your concerns about the meds. and your definite desire to get off them... at least long enough to give the diet a good try alone? I know that sounds like a silly question, but when we interviewed with our keto team, they were being " careful " about telling us that they really like to get off meds ASAP. When we just came right out and said we hated the meds, they didn't work and WE WANT OFF, they were very happy. Evidently, their experience is that many parents don't want to dc the meds right away. They sort of have to talk them into that part... we went prepared to present our case FOR getting off the meds. and prepared to hear all the rhetoric about the diet protocol... Looking back, it was actually quite amusing. Maybe I have a block in my brain somewhere... but I can't understand why, if a child was seizing on meds, then started the diet and is still seizing, why it would be so bad to wean the meds and try the diet alone. The worst that could happen is that the child would still be seizing on the diet alone. At least you would know that the meds weren't interfering with the diet and/or your fine tuning attempts at the diet. When I joined this group, Logan was doing so well. It would be great for him to get back there again. I definitely think there is hope... and his seizures don't have to be " intractible " forever. Cammie > 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... Hi...I haven't read the other responses yet,but I'm sure ours will be very similiar to theirs. Sev is intractable. On most days I've come to grips with that, on others it seems impossible to bear. We've done 13 or 14 meds...I can't even remember them all to write them down. He's done keto (best control by far, but eventually the seizures found a way around it), SCdiet...though not STRICT, and the VNS. We've tried flax, b vitamins, craniosacral and are currently looking into the whole spinal tap thing. He seems to fit one of the possibilities they test for. L Serine deficiency. Anywho...the VNS did take away his LONG seizures. We haven't given Diastat in a year and a half now, and no ambulance in almost two years. That is a BLESSING we are so greatful for. We used to average once a week on Diastat and once a month on the ambulance. We no longer cringe if we are coming home alone and see a fire truck or ambulance heading to our house. That was always such a stomach churning experience. More than once, I'd pass my DH on the way home from work...me in the ambulance and him in his jeep. He'd always tense up, even if Sev was with us, when he saw any early responder type vehicle. So....we've made progress. We're thankful. But like you, I wonder WHY the heck we can delve into deep outer space, fight wars with frightening precission, and see a pepsi can buried in the desert from a satelite thousands of miles away, but we can't stop my son from seizing. Breaks my heart somedays to thing about it. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 peteymedic1 wrote: > Does any one have a child with intractable seizures? Complex partial > or simple partial? Well, that would cover a lot of us on the board I am sure, 's are complex partial that generallize so quickly that they look like tonic clonic > We have been thru 8 meds and have had up and down > success with the diet. We were through six meds pre-diet, now on our second med since being on diet six years > We have had med free and seizure free. We have been med and seizure free for two long periods on the diet > 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. 's started at 13 months, one day after taking her first independant steps. Before that she was a perfectly normal baby > 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. My advice would be to work with the diet more, trying to get rid of the phenobarb or whatever it was that was added during last ER trip. Kind of like income tax, right, a " temporary " measure that will live on forever (if the drs have any say about it). As I recall, I thought you guys were doing pretty good on the diet initially. Can you recoup what happened? And no, never, ever, give up hope , 's mom > > Laurie mom to Logan(2) > > > > " 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 February 22, 2004 Report Share Posted February 22, 2004 peteymedic1 wrote: > Does any one have a child with intractable seizures? Complex partial > or simple partial? Well, that would cover a lot of us on the board I am sure, 's are complex partial that generallize so quickly that they look like tonic clonic > We have been thru 8 meds and have had up and down > success with the diet. We were through six meds pre-diet, now on our second med since being on diet six years > We have had med free and seizure free. We have been med and seizure free for two long periods on the diet > 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. 's started at 13 months, one day after taking her first independant steps. Before that she was a perfectly normal baby > 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. My advice would be to work with the diet more, trying to get rid of the phenobarb or whatever it was that was added during last ER trip. Kind of like income tax, right, a " temporary " measure that will live on forever (if the drs have any say about it). As I recall, I thought you guys were doing pretty good on the diet initially. Can you recoup what happened? And no, never, ever, give up hope , 's mom > > Laurie mom to Logan(2) > > > > " 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 February 22, 2004 Report Share Posted February 22, 2004 peteymedic1 wrote: > Does any one have a child with intractable seizures? Complex partial > or simple partial? Well, that would cover a lot of us on the board I am sure, 's are complex partial that generallize so quickly that they look like tonic clonic > We have been thru 8 meds and have had up and down > success with the diet. We were through six meds pre-diet, now on our second med since being on diet six years > We have had med free and seizure free. We have been med and seizure free for two long periods on the diet > 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. 's started at 13 months, one day after taking her first independant steps. Before that she was a perfectly normal baby > 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. My advice would be to work with the diet more, trying to get rid of the phenobarb or whatever it was that was added during last ER trip. Kind of like income tax, right, a " temporary " measure that will live on forever (if the drs have any say about it). As I recall, I thought you guys were doing pretty good on the diet initially. Can you recoup what happened? And no, never, ever, give up hope , 's mom > > Laurie mom to Logan(2) > > > > " 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 February 22, 2004 Report Share Posted February 22, 2004 Laurie, I don't have any answers for you but I wanted to write and tell you that our family will be praying for you. I'm a nurse, my husband is a paramedic/firefighter, and is 23mo and started having seizures at 5 months old too, with no other diagnoisis but E. We have much in common. I hope that you find your answers and that things go well for you and for Logan. > 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 have any answers for you but I wanted to write and tell you that our family will be praying for you. I'm a nurse, my husband is a paramedic/firefighter, and is 23mo and started having seizures at 5 months old too, with no other diagnoisis but E. We have much in common. I hope that you find your answers and that things go well for you and for Logan. > 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 Thank you Nan... Logan has been hospitalized once or twice a month for a year. Then he started the diet and went 5 months without needing emergency intervention. We made some mistakes while finetuning and have learned alot. The one being too many calories. I have a new found energy to keep going after I have read the responses from everyone...Thanks from the bottom of my heart. Laurie > Laurie... > > Hi...I haven't read the other responses yet,but I'm sure ours will be > very similiar to theirs. Sev is intractable. On most days I've come > to grips with that, on others it seems impossible to bear. We've > done 13 or 14 meds...I can't even remember them all to write them > down. He's done keto (best control by far, but eventually the > seizures found a way around it), SCdiet...though not STRICT, and the > VNS. We've tried flax, b vitamins, craniosacral and are currently > looking into the whole spinal tap thing. He seems to fit one of the > possibilities they test for. L Serine deficiency. > > Anywho...the VNS did take away his LONG seizures. We haven't given > Diastat in a year and a half now, and no ambulance in almost two > years. That is a BLESSING we are so greatful for. We used to average > once a week on Diastat and once a month on the ambulance. We no > longer cringe if we are coming home alone and see a fire truck or > ambulance heading to our house. That was always such a stomach > churning experience. More than once, I'd pass my DH on the way home > from work...me in the ambulance and him in his jeep. He'd always > tense up, even if Sev was with us, when he saw any early responder > type vehicle. So....we've made progress. We're thankful. > > But like you, I wonder WHY the heck we can delve into deep outer > space, fight wars with frightening precission, and see a pepsi can > buried in the desert from a satelite thousands of miles away, but we > can't stop my son from seizing. Breaks my heart somedays to thing > about it. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thank you Nan... Logan has been hospitalized once or twice a month for a year. Then he started the diet and went 5 months without needing emergency intervention. We made some mistakes while finetuning and have learned alot. The one being too many calories. I have a new found energy to keep going after I have read the responses from everyone...Thanks from the bottom of my heart. Laurie > Laurie... > > Hi...I haven't read the other responses yet,but I'm sure ours will be > very similiar to theirs. Sev is intractable. On most days I've come > to grips with that, on others it seems impossible to bear. We've > done 13 or 14 meds...I can't even remember them all to write them > down. He's done keto (best control by far, but eventually the > seizures found a way around it), SCdiet...though not STRICT, and the > VNS. We've tried flax, b vitamins, craniosacral and are currently > looking into the whole spinal tap thing. He seems to fit one of the > possibilities they test for. L Serine deficiency. > > Anywho...the VNS did take away his LONG seizures. We haven't given > Diastat in a year and a half now, and no ambulance in almost two > years. That is a BLESSING we are so greatful for. We used to average > once a week on Diastat and once a month on the ambulance. We no > longer cringe if we are coming home alone and see a fire truck or > ambulance heading to our house. That was always such a stomach > churning experience. More than once, I'd pass my DH on the way home > from work...me in the ambulance and him in his jeep. He'd always > tense up, even if Sev was with us, when he saw any early responder > type vehicle. So....we've made progress. We're thankful. > > But like you, I wonder WHY the heck we can delve into deep outer > space, fight wars with frightening precission, and see a pepsi can > buried in the desert from a satelite thousands of miles away, but we > can't stop my son from seizing. Breaks my heart somedays to thing > about it. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thank you Nan... Logan has been hospitalized once or twice a month for a year. Then he started the diet and went 5 months without needing emergency intervention. We made some mistakes while finetuning and have learned alot. The one being too many calories. I have a new found energy to keep going after I have read the responses from everyone...Thanks from the bottom of my heart. Laurie > Laurie... > > Hi...I haven't read the other responses yet,but I'm sure ours will be > very similiar to theirs. Sev is intractable. On most days I've come > to grips with that, on others it seems impossible to bear. We've > done 13 or 14 meds...I can't even remember them all to write them > down. He's done keto (best control by far, but eventually the > seizures found a way around it), SCdiet...though not STRICT, and the > VNS. We've tried flax, b vitamins, craniosacral and are currently > looking into the whole spinal tap thing. He seems to fit one of the > possibilities they test for. L Serine deficiency. > > Anywho...the VNS did take away his LONG seizures. We haven't given > Diastat in a year and a half now, and no ambulance in almost two > years. That is a BLESSING we are so greatful for. We used to average > once a week on Diastat and once a month on the ambulance. We no > longer cringe if we are coming home alone and see a fire truck or > ambulance heading to our house. That was always such a stomach > churning experience. More than once, I'd pass my DH on the way home > from work...me in the ambulance and him in his jeep. He'd always > tense up, even if Sev was with us, when he saw any early responder > type vehicle. So....we've made progress. We're thankful. > > But like you, I wonder WHY the heck we can delve into deep outer > space, fight wars with frightening precission, and see a pepsi can > buried in the desert from a satelite thousands of miles away, but we > can't stop my son from seizing. Breaks my heart somedays to thing > about it. Hugs...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 I know you have written back and forth to my husband. I am a nurse and he is a medic/vol firefighter. Thanks for your prayers. Laurie \ > > 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 I know you have written back and forth to my husband. I am a nurse and he is a medic/vol firefighter. Thanks for your prayers. Laurie \ > > 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 I know you have written back and forth to my husband. I am a nurse and he is a medic/vol firefighter. Thanks for your prayers. Laurie \ > > 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...
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