Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 HI all... Sev's seizures have increased this past week...he's having about 15-20 a day lasting 1-3 minutes. I don't even begin to know what to do anymore. I added to DMG this week, but the seizures had increased before I added that. He is sleeping better on the DMG. I haven't added anything else in a while. I'm just not sure what to do. I've been a hold out on most of the 'alternative' type things...I just honestly haven't thought many people were having much success with those things. If I'm wrong, please someone chime in and let me know what you are doing that works. I have him on the high dose of B6 in the nuthera. We've tried the digestive enzymes (three different kinds) with no change in seizures, but they all made him start spitting up and seemed to make his tummy upset. We tried trace minerals...increased seizures. Carnitor....increased seizures wildly. Flax...increased seizures. CLO....fatigued him. I've broken his pheno into 4 doses through the day. I've lowered the ratio, raised the ratio, added oils, taken oils away, removed all dairy, gone to only veggies or only fruits for the carbs, increased the protein, lowered the protein, 3 meals, 4 meals, 6 meals. The only real positive impact I noticed was when I went to only cream/butter for the fats. We had very decent control, but he turned out to be allergic to milk products. I've tried all kinds of other saturated fats to mimic that control...coconut milk (increased seizures and made him miserable), lard (loved it but didn't improve control), and goat's cheese with no luck. Have I missed anything? Does anything jump out at anyone? I haven't had a chance to start tracking his blood gases...that is my last great hope. We've been through practically all the meds with noooooooo luck except Keppra. I just have no faith or even hope that it will help after so many have failed. I even looked in the phone book for a naturopath yesterday. I know many of you use them, but it's always just sounded so far fetched to me. I'm just at the end and to a point where I never wanted to be...feeling like I have to chase every little thing no matter how far out there and no matter how much it cost. I know there are homeopaths, osteopaths, and naturopaths...where should I start? I called an osteopath a month ago and was told that they supported the use of AED's and didn't feel they could support the idea of a diet instead of meds. I thought that was completely opposite of the reply I should get. Can you tell I just have no idea what to do now???? any thoughts would be appreciated. I'm going to find out today how to track down the whole blood gas issue. Is it a stick or a little prick???? Nan But even if it does seem like he needs to be more acidic, he can't handle ketosis...how would I get him there????? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Nan, It's so frustrating! How about trying Goat's cream as it is supposed to be tolerated better by people who have a problem with dairy? Sara uses it for Daisy. Rohan couldn't use any flax at one time without getting v.tired. Since starting the d.enzymes I've introduced a bit of flax without problem. We are also using mostly cream but am thinking of trying a bit more oil. We started with low amount of d.enzymes and increased it to the recommended level later. At first, Rohan felt better then he started having night sz, which I thought was something to do with the d.enzymes, so I stopped them, but introduced again later. Now I think the night sz were to do with the dep wean (4 months after we'd stopped it) and would have been there whatever we did. Further away from that wean things are a bit better but not under control. What I'm trying to say is that the d.enzymes are helping to tolerate oils etc, so even if they have no direct impact on sz, they help overall. Do you think that Sevi might have a yeast problem? If he's been on a lot of antibiotics - he may well have. I know he is so sensitive to new things and you may be wary of trying acidophilus, but it might help. Did you wean any of the pheno? If so, are the sz related to that? I think the effects of some drugs are more far reaching than the neuros think. Like you, I don't think any other Aed will help after we've tried so many without success. Ethosuximide (Zarontin sp?) is the next one on the cards for Rohan. It was not even a drug of choice for him, so I don't think we should try it just because it is one of the ones left. I don't know much about the other alteranative stuff, but hope someone will tell you. Another thing I can think of is a wt. gain- but obviously you would have ruled it out. Give Sev a hug from me. Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Nan, It's so frustrating! How about trying Goat's cream as it is supposed to be tolerated better by people who have a problem with dairy? Sara uses it for Daisy. Rohan couldn't use any flax at one time without getting v.tired. Since starting the d.enzymes I've introduced a bit of flax without problem. We are also using mostly cream but am thinking of trying a bit more oil. We started with low amount of d.enzymes and increased it to the recommended level later. At first, Rohan felt better then he started having night sz, which I thought was something to do with the d.enzymes, so I stopped them, but introduced again later. Now I think the night sz were to do with the dep wean (4 months after we'd stopped it) and would have been there whatever we did. Further away from that wean things are a bit better but not under control. What I'm trying to say is that the d.enzymes are helping to tolerate oils etc, so even if they have no direct impact on sz, they help overall. Do you think that Sevi might have a yeast problem? If he's been on a lot of antibiotics - he may well have. I know he is so sensitive to new things and you may be wary of trying acidophilus, but it might help. Did you wean any of the pheno? If so, are the sz related to that? I think the effects of some drugs are more far reaching than the neuros think. Like you, I don't think any other Aed will help after we've tried so many without success. Ethosuximide (Zarontin sp?) is the next one on the cards for Rohan. It was not even a drug of choice for him, so I don't think we should try it just because it is one of the ones left. I don't know much about the other alteranative stuff, but hope someone will tell you. Another thing I can think of is a wt. gain- but obviously you would have ruled it out. Give Sev a hug from me. Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2001 Report Share Posted August 9, 2001 Dear Nan: I must say you have tried and tried-but have you ever tested his sodium-I know was low on sodium-and another child. I have this article that I had posted before that a shortage of sodium can make a child allergic to almost anything. It might be worth a shot. You are such a dilligent Mom-you put your all into this and I pray that you get a break. I find that Saro, DeEtte and Yourself have all been pushed to the limit. I felt that way right before our answer came. I think I lost it mentally I kind of caved-and to me it was like God took over-once I stopped pushing-but I am very pushy when it feels like the world is crashing down around me. I applaud your decisions and support whatever you decide-may-be the Naturopath might be your answer. Hugs Diane Sev update... > HI all... > > Sev's seizures have increased this past week...he's having about 15-20 > a day lasting 1-3 minutes. I don't even begin to know what to do > anymore. I added to DMG this week, but the seizures had increased > before I added that. He is sleeping better on the DMG. I haven't > added anything else in a while. I'm just not sure what to do. I've > been a hold out on most of the 'alternative' type things...I just > honestly haven't thought many people were having much success with > those things. If I'm wrong, please someone chime in and let me know > what you are doing that works. I have him on the high dose of B6 in > the nuthera. We've tried the digestive enzymes (three different > kinds) with no change in seizures, but they all made him start > spitting up and seemed to make his tummy upset. We tried trace > minerals...increased seizures. Carnitor....increased seizures wildly. > Flax...increased seizures. CLO....fatigued him. I've broken his > pheno into 4 doses through the day. I've lowered the ratio, raised > the ratio, added oils, taken oils away, removed all dairy, gone to > only veggies or only fruits for the carbs, increased the protein, > lowered the protein, 3 meals, 4 meals, 6 meals. The only real > positive impact I noticed was when I went to only cream/butter for the > fats. We had very decent control, but he turned out to be allergic to > milk products. I've tried all kinds of other saturated fats to mimic > that control...coconut milk (increased seizures and made him > miserable), lard (loved it but didn't improve control), and goat's > cheese with no luck. Have I missed anything? Does anything jump out > at anyone? I haven't had a chance to start tracking his blood > gases...that is my last great hope. We've been through practically > all the meds with noooooooo luck except Keppra. I just have no faith > or even hope that it will help after so many have failed. > > I even looked in the phone book for a naturopath yesterday. I know > many of you use them, but it's always just sounded so far fetched to > me. I'm just at the end and to a point where I never wanted to > be...feeling like I have to chase every little thing no matter how far > out there and no matter how much it cost. I know there are > homeopaths, osteopaths, and naturopaths...where should I start? I > called an osteopath a month ago and was told that they supported the > use of AED's and didn't feel they could support the idea of a diet > instead of meds. I thought that was completely opposite of the reply > I should get. Can you tell I just have no idea what to do now???? > any thoughts would be appreciated. I'm going to find out today how to > track down the whole blood gas issue. Is it a stick or a little > prick???? Nan But even if it does seem like he needs to be more > acidic, he can't handle ketosis...how would I get him there????? > > > > " 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 August 9, 2001 Report Share Posted August 9, 2001 Dear Nan: I must say you have tried and tried-but have you ever tested his sodium-I know was low on sodium-and another child. I have this article that I had posted before that a shortage of sodium can make a child allergic to almost anything. It might be worth a shot. You are such a dilligent Mom-you put your all into this and I pray that you get a break. I find that Saro, DeEtte and Yourself have all been pushed to the limit. I felt that way right before our answer came. I think I lost it mentally I kind of caved-and to me it was like God took over-once I stopped pushing-but I am very pushy when it feels like the world is crashing down around me. I applaud your decisions and support whatever you decide-may-be the Naturopath might be your answer. Hugs Diane Sev update... > HI all... > > Sev's seizures have increased this past week...he's having about 15-20 > a day lasting 1-3 minutes. I don't even begin to know what to do > anymore. I added to DMG this week, but the seizures had increased > before I added that. He is sleeping better on the DMG. I haven't > added anything else in a while. I'm just not sure what to do. I've > been a hold out on most of the 'alternative' type things...I just > honestly haven't thought many people were having much success with > those things. If I'm wrong, please someone chime in and let me know > what you are doing that works. I have him on the high dose of B6 in > the nuthera. We've tried the digestive enzymes (three different > kinds) with no change in seizures, but they all made him start > spitting up and seemed to make his tummy upset. We tried trace > minerals...increased seizures. Carnitor....increased seizures wildly. > Flax...increased seizures. CLO....fatigued him. I've broken his > pheno into 4 doses through the day. I've lowered the ratio, raised > the ratio, added oils, taken oils away, removed all dairy, gone to > only veggies or only fruits for the carbs, increased the protein, > lowered the protein, 3 meals, 4 meals, 6 meals. The only real > positive impact I noticed was when I went to only cream/butter for the > fats. We had very decent control, but he turned out to be allergic to > milk products. I've tried all kinds of other saturated fats to mimic > that control...coconut milk (increased seizures and made him > miserable), lard (loved it but didn't improve control), and goat's > cheese with no luck. Have I missed anything? Does anything jump out > at anyone? I haven't had a chance to start tracking his blood > gases...that is my last great hope. We've been through practically > all the meds with noooooooo luck except Keppra. I just have no faith > or even hope that it will help after so many have failed. > > I even looked in the phone book for a naturopath yesterday. I know > many of you use them, but it's always just sounded so far fetched to > me. I'm just at the end and to a point where I never wanted to > be...feeling like I have to chase every little thing no matter how far > out there and no matter how much it cost. I know there are > homeopaths, osteopaths, and naturopaths...where should I start? I > called an osteopath a month ago and was told that they supported the > use of AED's and didn't feel they could support the idea of a diet > instead of meds. I thought that was completely opposite of the reply > I should get. Can you tell I just have no idea what to do now???? > any thoughts would be appreciated. I'm going to find out today how to > track down the whole blood gas issue. Is it a stick or a little > prick???? Nan But even if it does seem like he needs to be more > acidic, he can't handle ketosis...how would I get him there????? > > > > " 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 August 10, 2001 Report Share Posted August 10, 2001 I gave 500-1000 mgs a day. Sometimes the B6 complex (250 mg B6 plus all the other B vitamins) seems to make him hyper, (he's like a butter churn in bed) in which case giving him the extra 500 mg of taurine seems to calm him right down. Maybe that's all I needed to do to stop the seizures??? The only frustrating thing about all this, and probably the reason I am still snooping around this list, is I don't know WHY he isn't having seizures or WHY that first sudden death event happened. It still haunts me. And I still want to try to help others with kids with seizures and hear what others are finding out. Yesterday I tried giving him less of the B6 complex. (I just dumped about half of it out) and then giving him only one taurine (500 mg) and he didn't get hyper. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Elaine... Taurine is on my list of things to try...I just started the DMG last week, and this week I'm going to try the taurine. I think I may try to get into to see a naturopath and get things lined out though. I feel like I'm going about it all willy nilly and need to get some organization and doses. I also upped his dose of calcium slightly. Right now, I have him on a separated calcium supplement and he gets him mag in his multivitamin. I'm going to order the whole life c/m/z II and see if that helps. My head is just spinning! So glad to hear is doing well...behavior is a HUGE thing...so nice when something impacts it positively! Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Dear Nan, As you may or may not remember, our venture with the diet was very short lived as got very sick and dangerously thin during the fast (he was thin before). However, after the fast and the ketosis for 4-5 days, did great when we started introducing food again. He was on a very smal dose of depakote and his seizures were gone for 4 months. He was like a new child, talking and running. He could barely walk from his meds being so high and no language. It was so fascinating to see him come back to life. I do believe that the carbs are a no no. They are bad for all of us if used in excess . Anyways, I wish you and Sev well and hope that you find the miracle that you are looking for. We are still plugging away trying to figure out something that will work for us. Good Luck! Keep us posted! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 ... Very early on (over a year ago), we realized that Sev couldn't handle the high ketosis...his seizures increased if he got to even medium. So we found a ratio that gave pretty good control...about 3.25:1. Slowly though, over the year, Sev would loose control and we would have to lower the ratio to get control back. We tried several times to go up on the ratio only to have the seizures go wild. He would improve when we lowered the ratio. Finally, he just got so low, that lowering didn't make any sense anymore. I do feel the keto diet worked for Sev, but I don't think it was the ketosis that did it...or the lack of carbs. I'm not sure what it was for Sev, but he never responded to anything like most of the other kids did. Flax, carnitor, and even digestive enzyme all gave him trouble. I'm just hoping that there is some kind of metabolic/digestive thing that we can figure out with all of these clues that will help us find out what did help him while on the diet. Glad to hear your little man was helped as well and I'm hoping we all find a permanent answer for our little ones soon...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 ... Very early on (over a year ago), we realized that Sev couldn't handle the high ketosis...his seizures increased if he got to even medium. So we found a ratio that gave pretty good control...about 3.25:1. Slowly though, over the year, Sev would loose control and we would have to lower the ratio to get control back. We tried several times to go up on the ratio only to have the seizures go wild. He would improve when we lowered the ratio. Finally, he just got so low, that lowering didn't make any sense anymore. I do feel the keto diet worked for Sev, but I don't think it was the ketosis that did it...or the lack of carbs. I'm not sure what it was for Sev, but he never responded to anything like most of the other kids did. Flax, carnitor, and even digestive enzyme all gave him trouble. I'm just hoping that there is some kind of metabolic/digestive thing that we can figure out with all of these clues that will help us find out what did help him while on the diet. Glad to hear your little man was helped as well and I'm hoping we all find a permanent answer for our little ones soon...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 ... Very early on (over a year ago), we realized that Sev couldn't handle the high ketosis...his seizures increased if he got to even medium. So we found a ratio that gave pretty good control...about 3.25:1. Slowly though, over the year, Sev would loose control and we would have to lower the ratio to get control back. We tried several times to go up on the ratio only to have the seizures go wild. He would improve when we lowered the ratio. Finally, he just got so low, that lowering didn't make any sense anymore. I do feel the keto diet worked for Sev, but I don't think it was the ketosis that did it...or the lack of carbs. I'm not sure what it was for Sev, but he never responded to anything like most of the other kids did. Flax, carnitor, and even digestive enzyme all gave him trouble. I'm just hoping that there is some kind of metabolic/digestive thing that we can figure out with all of these clues that will help us find out what did help him while on the diet. Glad to hear your little man was helped as well and I'm hoping we all find a permanent answer for our little ones soon...Nan Quote Link to comment Share on other sites More sharing options...
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