Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Nan -- I know your hotmail account is down. . . are you just accessing messages at the site? Anyway, wanted to pass along another thought I had today as I was driving. is very sensitive to changes in barometric pressure -- weather changes and climate changes seem to really be a trigger for her. There was also just recently a newspaper article I read that verified this regarding Migraine sufferers. . .seems completely plausible that the same could be true for seizures. Anyway, with the wacky weather we've been having during Monsoon season, I wonder if this could be why Sev's seizures have been so bonkers lately. Could also explain why you have the problems in Texas -- maybe it's not Texas, just the change in climate from here to there. Hope your naturopathic visit went well and gave you food for thought. I'm anxious to talk to you about it. If you decided to move forward with Dr. Greska, this barometric pressure theory might be something to run by her -- if it makes sense to you. Take care.--D ===== DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly reduced) and (, 4), sdale, AZ " I know God would never give me more than I can handle. . .I just wish he didn't trust me so much. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 De.. The whole barometric pressure thing is something I thought about last year at this time! It would certainly explain Texas as well. Of course, darling doctor just pooh pooh'd the idea when I threw it out at him. The visit yesterday went well...I almost felt like it was therapy for me more than a doctor's visit for Sev. The talked to me for a long time, and validated many of my thoughts. She was very interested in my ideas on the whole sensitivity/diet related control issue. She is very motivated to help, and wants to get right on some things...a hair analysis, a fatty acid analysis, a stool culture for yeast, and a vit/mineral profile. I can get my insurance to pay for the last two if my ped will prescribe them. The other two I can get for around $200, so we're going to check out these avenues. The thing that struck me though as I was leaving was that they never 'checked out' Sev...just talked to me. Seems funny. Is that typical at a naturopath? I would've thought they would have looked at his eyes and throat and felt his organs, checked his fingernails...something! Anyway, I was more comfortable than I thought I would be. She's also going to check into something coming out of Europe called 'brain proticol' or something like that. I think it's homeopathic. We'll see... I'm reading the messages at the site and I must say I prefer that to getting all the emails. I think I'll stick with it! Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 De.. The whole barometric pressure thing is something I thought about last year at this time! It would certainly explain Texas as well. Of course, darling doctor just pooh pooh'd the idea when I threw it out at him. The visit yesterday went well...I almost felt like it was therapy for me more than a doctor's visit for Sev. The talked to me for a long time, and validated many of my thoughts. She was very interested in my ideas on the whole sensitivity/diet related control issue. She is very motivated to help, and wants to get right on some things...a hair analysis, a fatty acid analysis, a stool culture for yeast, and a vit/mineral profile. I can get my insurance to pay for the last two if my ped will prescribe them. The other two I can get for around $200, so we're going to check out these avenues. The thing that struck me though as I was leaving was that they never 'checked out' Sev...just talked to me. Seems funny. Is that typical at a naturopath? I would've thought they would have looked at his eyes and throat and felt his organs, checked his fingernails...something! Anyway, I was more comfortable than I thought I would be. She's also going to check into something coming out of Europe called 'brain proticol' or something like that. I think it's homeopathic. We'll see... I'm reading the messages at the site and I must say I prefer that to getting all the emails. I think I'll stick with it! Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 De.. The whole barometric pressure thing is something I thought about last year at this time! It would certainly explain Texas as well. Of course, darling doctor just pooh pooh'd the idea when I threw it out at him. The visit yesterday went well...I almost felt like it was therapy for me more than a doctor's visit for Sev. The talked to me for a long time, and validated many of my thoughts. She was very interested in my ideas on the whole sensitivity/diet related control issue. She is very motivated to help, and wants to get right on some things...a hair analysis, a fatty acid analysis, a stool culture for yeast, and a vit/mineral profile. I can get my insurance to pay for the last two if my ped will prescribe them. The other two I can get for around $200, so we're going to check out these avenues. The thing that struck me though as I was leaving was that they never 'checked out' Sev...just talked to me. Seems funny. Is that typical at a naturopath? I would've thought they would have looked at his eyes and throat and felt his organs, checked his fingernails...something! Anyway, I was more comfortable than I thought I would be. She's also going to check into something coming out of Europe called 'brain proticol' or something like that. I think it's homeopathic. We'll see... I'm reading the messages at the site and I must say I prefer that to getting all the emails. I think I'll stick with it! Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Barb... It just seems so funny that they didn't even look him over! Guess I'll understand as we get more into it. I'm getting the vit/mineral analysis and candida study on Monday...I'll get them to do blood gases at that time too. Then I have to go back and let them get the hair analysis and blood for the fatty acid analysis. Did you ever get any meaningful results from any of this...anything that changed your course of treatment or helped his seizures? Sev's seizures have gone wild...we are totally uncontrolled now...worse than he's ever been. We're having about 5-15 tonic episodes a day lasting from 30 seconds to 3 minutes. Plus, if all the stare type episodes he's having are seizures, he's having about 30-50 of those a day...maybe even more. The funny thing is he's so HAPPY right now...just playing and laughing and all together having a great time. His progress developmentally is maybe even a tad bit better than at some points...though it's always slow. He just has these episodes and snaps right out of it to go about his play. I'm at such a loss on what to do and have actually started the keppra until I can get the results back from the naturopath to begin that kind of treatment. It was the very last thing I wanted to do and I have NO faith that it will help, but it was at a point where we had to do something. I read a report the other day that even these new meds only help about 2% of the kids considered intractable. It just upsets me terribly that we had gotten very decent control earlier in the year with the butter/whipping cream and had to give it up! So glad to hear is making a good comeback! I know it's anuphill struglle, but if two people were ever determined enough to get up that hill, it's you and Bry. Please keep the updates coming...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Barb... It just seems so funny that they didn't even look him over! Guess I'll understand as we get more into it. I'm getting the vit/mineral analysis and candida study on Monday...I'll get them to do blood gases at that time too. Then I have to go back and let them get the hair analysis and blood for the fatty acid analysis. Did you ever get any meaningful results from any of this...anything that changed your course of treatment or helped his seizures? Sev's seizures have gone wild...we are totally uncontrolled now...worse than he's ever been. We're having about 5-15 tonic episodes a day lasting from 30 seconds to 3 minutes. Plus, if all the stare type episodes he's having are seizures, he's having about 30-50 of those a day...maybe even more. The funny thing is he's so HAPPY right now...just playing and laughing and all together having a great time. His progress developmentally is maybe even a tad bit better than at some points...though it's always slow. He just has these episodes and snaps right out of it to go about his play. I'm at such a loss on what to do and have actually started the keppra until I can get the results back from the naturopath to begin that kind of treatment. It was the very last thing I wanted to do and I have NO faith that it will help, but it was at a point where we had to do something. I read a report the other day that even these new meds only help about 2% of the kids considered intractable. It just upsets me terribly that we had gotten very decent control earlier in the year with the butter/whipping cream and had to give it up! So glad to hear is making a good comeback! I know it's anuphill struglle, but if two people were ever determined enough to get up that hill, it's you and Bry. Please keep the updates coming...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Barb... It just seems so funny that they didn't even look him over! Guess I'll understand as we get more into it. I'm getting the vit/mineral analysis and candida study on Monday...I'll get them to do blood gases at that time too. Then I have to go back and let them get the hair analysis and blood for the fatty acid analysis. Did you ever get any meaningful results from any of this...anything that changed your course of treatment or helped his seizures? Sev's seizures have gone wild...we are totally uncontrolled now...worse than he's ever been. We're having about 5-15 tonic episodes a day lasting from 30 seconds to 3 minutes. Plus, if all the stare type episodes he's having are seizures, he's having about 30-50 of those a day...maybe even more. The funny thing is he's so HAPPY right now...just playing and laughing and all together having a great time. His progress developmentally is maybe even a tad bit better than at some points...though it's always slow. He just has these episodes and snaps right out of it to go about his play. I'm at such a loss on what to do and have actually started the keppra until I can get the results back from the naturopath to begin that kind of treatment. It was the very last thing I wanted to do and I have NO faith that it will help, but it was at a point where we had to do something. I read a report the other day that even these new meds only help about 2% of the kids considered intractable. It just upsets me terribly that we had gotten very decent control earlier in the year with the butter/whipping cream and had to give it up! So glad to hear is making a good comeback! I know it's anuphill struglle, but if two people were ever determined enough to get up that hill, it's you and Bry. Please keep the updates coming...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > One other question...what help does the allopathic community offer ya??? HI Barb... What have they given me??? One med after the other, after the other, after the other! Oh, and MANY dubious looks as I tell them what I want to persue! Helpful, huh? Actually, the keppra OK so far. He only had one yesterday...a HUGE improvement from the previous weeks! He also slept better last night...a certain benefit I'm not going to take for granted. His nights have been simply miserable for about a month now. Sev's the classic 'honeymooner' though, so I'm just taking it day by day. I started at half the dose the neuro recommended since Sev is so sensitive to everything. He does have the complex partials that can generalize, so hopefully this will give us some relief until I can get some results back on the other issues. > what are you using now for fats...is he getting any wheat/dairy?? >sounds to me like he can easily burn the shorter chain fats and gets >a build up of long chains. did > you try Ghee?? what about coconut butter?? its a medium chain. I tried it all except for Ghee...can't get a positive answer if it is still a no no with a dairy allergy. We tried coconut milk, plain ol' lard, bacon with bacon fat. Now we're mostly using goat's cheese and mayo with his meals, and olive oil with his bottles. Not the best, I know, but the others did not help, and the coconut milk was a nightmare! He cried all the time like he was in pain. He LOVED the lard, but it grossed me out to give it to him! And it did nothing for the seizure control. I'll check into the Ghee...maybe there's an answer there. Keep the thoughts coming...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > One other question...what help does the allopathic community offer ya??? HI Barb... What have they given me??? One med after the other, after the other, after the other! Oh, and MANY dubious looks as I tell them what I want to persue! Helpful, huh? Actually, the keppra OK so far. He only had one yesterday...a HUGE improvement from the previous weeks! He also slept better last night...a certain benefit I'm not going to take for granted. His nights have been simply miserable for about a month now. Sev's the classic 'honeymooner' though, so I'm just taking it day by day. I started at half the dose the neuro recommended since Sev is so sensitive to everything. He does have the complex partials that can generalize, so hopefully this will give us some relief until I can get some results back on the other issues. > what are you using now for fats...is he getting any wheat/dairy?? >sounds to me like he can easily burn the shorter chain fats and gets >a build up of long chains. did > you try Ghee?? what about coconut butter?? its a medium chain. I tried it all except for Ghee...can't get a positive answer if it is still a no no with a dairy allergy. We tried coconut milk, plain ol' lard, bacon with bacon fat. Now we're mostly using goat's cheese and mayo with his meals, and olive oil with his bottles. Not the best, I know, but the others did not help, and the coconut milk was a nightmare! He cried all the time like he was in pain. He LOVED the lard, but it grossed me out to give it to him! And it did nothing for the seizure control. I'll check into the Ghee...maybe there's an answer there. Keep the thoughts coming...Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > One other question...what help does the allopathic community offer ya??? HI Barb... What have they given me??? One med after the other, after the other, after the other! Oh, and MANY dubious looks as I tell them what I want to persue! Helpful, huh? Actually, the keppra OK so far. He only had one yesterday...a HUGE improvement from the previous weeks! He also slept better last night...a certain benefit I'm not going to take for granted. His nights have been simply miserable for about a month now. Sev's the classic 'honeymooner' though, so I'm just taking it day by day. I started at half the dose the neuro recommended since Sev is so sensitive to everything. He does have the complex partials that can generalize, so hopefully this will give us some relief until I can get some results back on the other issues. > what are you using now for fats...is he getting any wheat/dairy?? >sounds to me like he can easily burn the shorter chain fats and gets >a build up of long chains. did > you try Ghee?? what about coconut butter?? its a medium chain. I tried it all except for Ghee...can't get a positive answer if it is still a no no with a dairy allergy. We tried coconut milk, plain ol' lard, bacon with bacon fat. Now we're mostly using goat's cheese and mayo with his meals, and olive oil with his bottles. Not the best, I know, but the others did not help, and the coconut milk was a nightmare! He cried all the time like he was in pain. He LOVED the lard, but it grossed me out to give it to him! And it did nothing for the seizure control. I'll check into the Ghee...maybe there's an answer there. Keep the thoughts coming...Nan Quote Link to comment Share on other sites More sharing options...
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