Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 sanaljay wrote: Things are pretty bad sz-wise this week. I don't think there's a connection with citrates, but Rohan's has been screaming with the start of sz - I've noticed that this usually happens when his urine is alkaline. The only thing that changed was we ran out of Ester C and gave him buffered vit C, but 500 mg twice as before. I believe Vit C's effect on blood chemistry is to make it more alkaline but don't quote me, I know I came across something like that when I was considering increasing 's Vit C and then I got scared to do it Does less acidic urine (pH has been between 6.5 & 7. Usually it's 6) mean the blood pH is alkaline too? I remember someone saying that if the blood is acidic it leaches calcuim etc. from the bones that make the urine more alkaline. Its hard to make exact correlation btn blood acidity and urine acidity but as a general rule I would say the less acidic (more alkaline) you are seeing the urine, the less acidic the blood chemistry will be. Only way to really tell though is to do blood gasses. The calcium thing gets complicated because the kidneys are so adept at regulating things. I am pretty sure that urine does NOT get more alkaline when blood is acidic. You are right about peeing out the extra calcium and although on some level it makes sense that should make urine less acidic it does not seem to work that way. When you are making kidney stones because peeing out so much calcium (which has been leached out of bones due to blood acidity), they give you polycitra - first thing polycitra does is lessen the acidity in urine, then it lessens blood acidity. I'm not sure whether Rohan is akaline or acidic, but the urine is more alkaline at the moment. There seems to be a definite connection of the sz to meals. Sometimes in about 35 minutes after a meal he starts screaming which is the beginning of a seizure. The palms get cold and very sweaty at these times. I thought it could be an allgergic reaction and changed to goat's cream and cheese from cow's double cream and cheese, from 2 days ago. There has been no improvement in the sz, infact they are steadily getting worse. I mean to change back to ester C tomorrow (can't go out with Rohan with him feeling poorly). One thing I notice today is that his ketones have gone up since last night - must be due the goat's cream. I just wish I knew what to do. He has been a bit out of it with no concentration but complained today of 'not feeling right' - guess it is the high ketones (for him) so reduced the ratio by 0.1 from lunch. I know probably too many changes - but I'm getting desperate. Sorry I really don't know what to suggest. Are you working with nephrologist with the calcium issues? I am wondering if treatment of osteo issue is complicating seizure picture. I know from personal experience the disasterous results of having a nephroloist who is good in his field but can't, or doesn't want to, "get" the ketodiet. Ours did in twice........ Wish I could help..... PS Perhaps citrate form of calcium, magnesium and increased Vit C together countered acidity of the diet, causing more seizures?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Oh Saro, Know exactly what you mean, gotta keep the faith!!! Don't know much at all about the acidity/alakine thing, we plan to start working on that one another time! 's multistix show consistently 5.0 to 5.5 for acidity, whatever that means. Sounds too coincidental about the seizures after eating. Hope you sort it out before you have to try another AED, but I guess if you have to, you do, Good luck, Hill Citrates- pl help! > Hi DeEtte, ,Jeanette, Faye & , > > Thanks for the posts on citrates. I give Rohan > manesium citrate and a mixuture of cal/mag which > also has some citrates. > Things are pretty bad sz-wise this week. I don't think > there's a connection with citrates, but Rohan's has > been screaming with the start of sz - I've noticed that > this usually happens when his urine is alkaline. The only thing that > changed was we ran out of Ester C and gave him buffered > vit C, but 500 mg twice as before. > Does less acidic urine (pH has been between 6.5 & 7. Usually > it's 6) mean the blood pH is alkaline too? I remember someone > saying that if the blood is acidic it leaches calcuim etc. from the > bones that make the urine more alkaline. > I'm not sure whether Rohan is akaline or acidic, but the > urine is more alkaline at the moment. > There seems to be a definite connection of the sz to meals. > Sometimes in about 35 minutes after a meal he starts screaming > which is the beginning of a seizure. The palms get cold and > very sweaty at these times. I thought it could be an allgergic > reaction and changed to goat's cream and cheese from cow's > double cream and cheese, from 2 days ago. There has been no > improvement in the sz, infact they are steadily getting worse. > I mean to change back to ester C tomorrow (can't go out with > Rohan with him feeling poorly). > One thing I notice today is that his ketones have gone up since > last night - must be due the goat's cream. > > I just wish I knew what to do. He has been a bit out of it with > no concentration but complained today of 'not feeling right' - > guess it is the high ketones (for him) so reduced the ratio by 0.1 > from lunch. I know probably too many changes - but I'm getting > desperate. > > Dh and I were thinking of asking for a low dose of an Aed, > but don't really want to, also we've got to persuade Rohan > first! Luckily for him he doesn't know about the sz he's having, > or that he can't concentrate or remember anything these days. > > Any thoughts or suggestions would be greatly appreciated. > Saro > > > > " 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 15, 2002 Report Share Posted February 15, 2002 Hi Saro Just a short comment re the allergy theory- the body sees any allergen as something it is addicted to so when you stop it you very often get withdrawl. When we stopped all dairy with Mike we had a horrible bout of seizures- at least 200/day for about 4 days. All my research said to hold tight and wait it out. as hard as this was we began to see improvement on day 5 and then things got very good. He was clearly allergic to milk and anything with whey or cassein. Mike also cannot tolerate goat milk. What you may be seeing just now is a withdrawl reaction- however this just pertains to the past couple of days. Re the acidity thing- there are alot of variables which affect blood/urine pH however I know that Mike always has more seizures when his urine is alkaline- we find that when he gets like this - if I reduce vitamins and minerals for a couple of days he bounces back into an acidic state faster. Hope some of this helps. Sorry to hear that things are so bad. We also had to put Mike back on AEDs- verrrry smalll dose of Lamictal has resulted in almost seizure free state- when combined with diet and supplements. Sometimes it is necessary . BTW I researched all Aeds and negotiated with neuro which one to try- I found almost all had lactose in them- we wanted to stay away from this- Lamictal in 5 mg pill was the only one I found that seemed OK as far as dairy went- so far we are seeing remarkable results on just 30 mg/day. Just food for thought. faye sanaljay wrote: > Hi DeEtte, ,Jeanette, Faye & , > > Thanks for the posts on citrates. I give Rohan > manesium citrate and a mixuture of cal/mag which > also has some citrates. > Things are pretty bad sz-wise this week. I don't think > there's a connection with citrates, but Rohan's has > been screaming with the start of sz - I've noticed that > this usually happens when his urine is alkaline. The only thing that > changed was we ran out of Ester C and gave him buffered > vit C, but 500 mg twice as before. > Does less acidic urine (pH has been between 6.5 & 7. Usually > it's 6) mean the blood pH is alkaline too? I remember someone > saying that if the blood is acidic it leaches calcuim etc. from the > bones that make the urine more alkaline. > I'm not sure whether Rohan is akaline or acidic, but the > urine is more alkaline at the moment. > There seems to be a definite connection of the sz to meals. > Sometimes in about 35 minutes after a meal he starts screaming > which is the beginning of a seizure. The palms get cold and > very sweaty at these times. I thought it could be an allgergic > reaction and changed to goat's cream and cheese from cow's > double cream and cheese, from 2 days ago. There has been no > improvement in the sz, infact they are steadily getting worse. > I mean to change back to ester C tomorrow (can't go out with > Rohan with him feeling poorly). > One thing I notice today is that his ketones have gone up since > last night - must be due the goat's cream. > > I just wish I knew what to do. He has been a bit out of it with > no concentration but complained today of 'not feeling right' - > guess it is the high ketones (for him) so reduced the ratio by 0.1 > from lunch. I know probably too many changes - but I'm getting > desperate. > > Dh and I were thinking of asking for a low dose of an Aed, > but don't really want to, also we've got to persuade Rohan > first! Luckily for him he doesn't know about the sz he's having, > or that he can't concentrate or remember anything these days. > > Any thoughts or suggestions would be greatly appreciated. > Saro > > > " 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 15, 2002 Report Share Posted February 15, 2002 Faye, We found Lamictal in a lactose free form. The chewable Lamictal is lactose free. Dan Currier Re: Citrates- pl help! Hi Saro Just a short comment re the allergy theory- the body sees any allergen as something it is addicted to so when you stop it you very often get withdrawl. When we stopped all dairy with Mike we had a horrible bout of seizures- at least 200/day for about 4 days. All my research said to hold tight and wait it out. as hard as this was we began to see improvement on day 5 and then things got very good. He was clearly allergic to milk and anything with whey or cassein. Mike also cannot tolerate goat milk. What you may be seeing just now is a withdrawl reaction- however this just pertains to the past couple of days. Re the acidity thing- there are alot of variables which affect blood/urine pH however I know that Mike always has more seizures when his urine is alkaline- we find that when he gets like this - if I reduce vitamins and minerals for a couple of days he bounces back into an acidic state faster. Hope some of this helps. Sorry to hear that things are so bad. We also had to put Mike back on AEDs- verrrry smalll dose of Lamictal has resulted in almost seizure free state- when combined with diet and supplements. Sometimes it is necessary . BTW I researched all Aeds and negotiated with neuro which one to try- I found almost all had lactose in them- we wanted to stay away from this- Lamictal in 5 mg pill was the only one I found that seemed OK as far as dairy went- so far we are seeing remarkable results on just 30 mg/day. Just food for thought. faye sanaljay wrote: > Hi DeEtte, ,Jeanette, Faye & , > > Thanks for the posts on citrates. I give Rohan > manesium citrate and a mixuture of cal/mag which > also has some citrates. > Things are pretty bad sz-wise this week. I don't think > there's a connection with citrates, but Rohan's has > been screaming with the start of sz - I've noticed that > this usually happens when his urine is alkaline. The only thing that > changed was we ran out of Ester C and gave him buffered > vit C, but 500 mg twice as before. > Does less acidic urine (pH has been between 6.5 & 7. Usually > it's 6) mean the blood pH is alkaline too? I remember someone > saying that if the blood is acidic it leaches calcuim etc. from the > bones that make the urine more alkaline. > I'm not sure whether Rohan is akaline or acidic, but the > urine is more alkaline at the moment. > There seems to be a definite connection of the sz to meals. > Sometimes in about 35 minutes after a meal he starts screaming > which is the beginning of a seizure. The palms get cold and > very sweaty at these times. I thought it could be an allgergic > reaction and changed to goat's cream and cheese from cow's > double cream and cheese, from 2 days ago. There has been no > improvement in the sz, infact they are steadily getting worse. > I mean to change back to ester C tomorrow (can't go out with > Rohan with him feeling poorly). > One thing I notice today is that his ketones have gone up since > last night - must be due the goat's cream. > > I just wish I knew what to do. He has been a bit out of it with > no concentration but complained today of 'not feeling right' - > guess it is the high ketones (for him) so reduced the ratio by 0.1 > from lunch. I know probably too many changes - but I'm getting > desperate. > > Dh and I were thinking of asking for a low dose of an Aed, > but don't really want to, also we've got to persuade Rohan > first! Luckily for him he doesn't know about the sz he's having, > or that he can't concentrate or remember anything these days. > > Any thoughts or suggestions would be greatly appreciated. > Saro > > > " 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 16, 2002 Report Share Posted February 16, 2002 Hi Faye, Thanks for your observations. I'm glad Mike is doing well on lamictal. About the withdrawal reaction- last night Rohan had 4 sleep sz and countless times he woke up saying confused things, almost every 20 mts. just like when we were reducing the depakote. I'll hang on and see how things go. Our most susscessful AED in the past was Vigabatrin before it too stopped working. Rohan has a visual field so we wouldn't want to try it. Thanks for the observation on reducing supplements temporarily as well - I think we've seen it too, but wasn't sure. Thanks again Saro kevin cooper wrote: Hi Saro Just a short comment re the allergy theory- the body sees any allergen as something it is addicted to so when you stop it you very often get withdrawl. When we stopped all dairy with Mike we had a horrible bout of seizures- at least 200/day for about 4 days. All my research said to hold tight and wait it out. as hard as this was we began to see improvement on day 5 and then things got very good. He was clearly allergic to milk and anything with whey or cassein. Mike also cannot tolerate goat milk. What you may be seeing just now is a withdrawl reaction- however this just pertains to the past couple of days. Re the acidity thing- there are alot of variables which affect blood/urine pH however I know that Mike always has more seizures when his urine is alkaline- we find that when he gets like this - if I reduce vitamins and minerals for a couple of days he bounces back into an acidic state faster. Hope some of this helps. Sorry to hear that things are so bad. We also had to put Mike back on AEDs- verrrry smalll dose of Lamictal has resulted in almost seizure free state- when combined with diet and supplements. Sometimes it is necessary . BTW I researched all Aeds and negotiated with neuro which one to try- I found almost all had lactose in them- we wanted to stay away from this- Lamictal in 5 mg pill was the only one I found that seemed OK as far as dairy went- so far we are seeing remarkable results on just 30 mg/day. Just food for thought. faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 , Thanks for shedding some light on the acid/alkaline thing. The treatment for osteo consists of three monthly infusions of Pamidronate. They say the effects last for 3 months. What it does is slow down the resorption (breaking down of old bone). Rohan had his 1st treatment in December and his backacke was better after a couple of weeks. Now is complaining again. It could be the extra seizures aggravating it or the pamidronate- effect wearing off. I think Rohan was on too low a dose of cal/mag for too long. His diet-dr. only prescribed 400mg of Cal, I told her about the list and other younger kids being on at least 600, but she insisted 400 was enough. After several months I added Mag and increased it to 600. Since the osteoporosis was discovered he is on 1000/700/37 cal.mg.zn. During the pamidronate treatment we were asked by the endo.dr to double the calcium intake as he feared sz due to blood levels falling. Funnily enough Rohan was OK sz-wise during the 5 days of double Cal/ Pam treatment. The endo dr. thought Rohan's Ca supplement before osteoporosis was discovered, was sufficient. But then, he knows nothing about the diet. I think he feels Rohan would be better off the diet and spoke to Rohan's previous neuro( we don't have one now, it's only a paed. doing the diet). This neuro was against the diet in the 1st place, and when I mentioned that depakote has been found to cause osteo - said that's the first he's heard of it! Perhaps we'd be better off the diet (since it's not working well enough) but don't know what to do instead. Sorry , didn't mean to ramble, guess I just wanted to vent, yet again! LOL Saro mmc@... wrote: Does less acidic urine (pH has been between 6.5 & 7. Usually it's 6) mean the blood pH is alkaline too? I remember someone saying that if the blood is acidic it leaches calcuim etc. from the bones that make the urine more alkaline. Its hard to make exact correlation btn blood acidity and urine acidity but as a general rule I would say the less acidic (more alkaline) you are seeing the urine, the less acidic the blood chemistry will be. Only way to really tell though is to do blood gasses. The calcium thing gets complicated because the kidneys are so adept at regulating things. I am pretty sure that urine does NOT get more alkaline when blood is acidic. You are right about peeing out the extra calcium and although on some level it makes sense that should make urine less acidic it does not seem to work that way. When you are making kidney stones because peeing out so much calcium (which has been leached out of bones due to blood acidity), they give you polycitra - first thing polycitra does is lessen the acidity in urine, then it lessens blood acidity. ..... Are you working with nephrologist with the calcium issues? I am wondering if treatment of osteo issue is complicating seizure picture. I know from personal experience the disasterous results of having a nephroloist who is good in his field but can't, or doesn't want to, "get" the ketodiet. Ours did in twice........ Wish I could help..... PS Perhaps citrate form of calcium, magnesium and increased Vit C together countered acidity of the diet, causing more seizures?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 I know this was talked about before but I cant find any information on it. What should a 4 yr old 40lb boy be on for cal:mag? And does zinc play a big part in this some how? Thanks Jenn sanaljay wrote: > > I think Rohan was on too low a dose of cal/mag > for too long. His diet-dr. only prescribed 400mg of Cal, I told > her about the list and other younger kids being on at least 600, > but she insisted 400 was enough. After several months I added Mag > and increased it to 600. Since the osteoporosis was discovered > he is on 1000/700/37 cal.mg.zn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2002 Report Share Posted February 17, 2002 Jenn, When Katera started the diet at age 4 (and 33 pounds), she was supposed to be getting 800 mgs of calcium. They didn't specify an amount on the mag but I kept it at half the cal amount, or 400. We were just in the dietician's office the other day and she said that now that she's 5 (and weighs 34.5 pounds....hasn't gained much but they didn't want her to) she wants her boosted up to 1000 mgs of calcium. I upped her mag to almost 600. I think the mag needs to be at least half of the calcium amount...... and some people do a 1:1 ratio on that if constipation is an issue. Yes, zinc is important for absorbtion of a lot of different nutrients. But also, (my book says, anyway) if calcium intake is increased, zinc needs to be increased because high levels of calcium can prevent absorbtion of zinc. Zinc also helps regulate insulin levels.....and lots of other important stuff. The dietician told me also that we need to make sure she's getting plenty of phosphorus (800 mgs for Katera) to aid calcium absorbtion. I hadn't known about this before but she said it's SUPER important. From what I've been able to find out, you don't really need to supplement phosphorus (I couldn't even FIND supplements of this to buy), just need to make sure to choose plenty of phosphorus rich foods. This isn't easy on this diet...... meat, eggs, dairy and all kinds of nuts are high in it..... but we don't get to feed Katera much of these items. It is pretty plentiful in foods but you kind of need to see a nutrient chart and go over the foods they routinely eat and see how it's stacking up. I am going to check back with the dietician to see what else we can do about it. Anyway, having enough calcium supplements going in isn't the whole picture, (I know you already know that ). Patti Re: Citrates- pl help! I know this was talked about before but I cant find any information onit.What should a 4 yr old 40lb boy be on for cal:mag? And does zinc play abig part in this some how?ThanksJennsanaljay wrote:>> I think Rohan was on too low a dose of cal/mag> for too long. His diet-dr. only prescribed 400mg of Cal, I told> her about the list and other younger kids being on at least 600,> but she insisted 400 was enough. After several months I added Mag> and increased it to 600. Since the osteoporosis was discovered> he is on 1000/700/37 cal.mg.zn. "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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.