Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 -- so sorry to hear it. My only thought was that our neuro told us it took a full two weeks to clear out all the Zonegran (10 days post wean) so I'm wondering if you're not seeing " withdrawal " seizures from the zonegran now. Do you think you could hang in for a few days and see if it passes? Then again, you didn't lower very much so who knows? I know other people on the list have seen withdrawal seizures 6-14 days post-wean with drugs that supposedly clear out of the body much faster than Zonegran. We had the same experience with the carnosine and now give it only at night as well. Don't know about the ratio. HOpefully someone more experienced can respond to that one. Hang in there. Jane Lower the ratio? After a couple wonderful seizure free days, things are not going as well. As I posted, had a drop that ended up with six stitches in his lip. We've been seeing more drops as well the past few days which we hadn't been seeing lately. We last lowered the Zonegran (tiny drop 12.5mg) on July 19. It's got a 48-60 hours 1/2life. The seizures started back on July 26. And the last drop of his Klonipin was June 28. Ketones always stay high. We haven't been making any changes. We tried carnosine 2x a day last week, but have only been giving it at night because has seemed irritable. We'll probably put it on the back burner for now just to eliminate all variables. We're at a 4:1 ratio right now. I'm debating dropping th ratio to 3.5. I'm wondering with all the med reductions if the ratio is too high and could possibly be causing seizures. Any thoughts/advice? Just trying to figure out what went awry. ashley 's mom, age 4, autism, nonverbal, possible LGS, keto kid since 5/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 After a couple wonderful seizure free days, things are not going as well. As I posted, had a drop that ended up with six stitches in his lip. We've been seeing more drops as well the past few days which we hadn't been seeing lately. We last lowered the Zonegran (tiny drop 12.5mg) on July 19. It's got a 48-60 hours 1/2life. The seizures started back on July 26. And the last drop of his Klonipin was June 28. Ketones always stay high. We haven't been making any changes. We tried carnosine 2x a day last week, but have only been giving it at night because has seemed irritable. We'll probably put it on the back burner for now just to eliminate all variables. We're at a 4:1 ratio right now. I'm debating dropping th ratio to 3.5. I'm wondering with all the med reductions if the ratio is too high and could possibly be causing seizures. Any thoughts/advice? Just trying to figure out what went awry. ashley 's mom, age 4, autism, nonverbal, possible LGS, keto kid since 5/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 , The first ever drop sz my son had was about 4 weeks after he'd gone med-free on the KGD. This was 8 yrs after he started having sz. He had another a few days later. The first time his lip and the next his chin had to be glued. He also cracked two front teeth. He's had a few drop sz since then and my thoughts are that the ketones were too high. Another confusing thing is that we'd tried codliver oil (tiny amount) and given it up just before these drop sz. on almost all the times. I thought I'd share this even though it might not be of any help. Saro.....Rohan's mum Lower the ratio? > After a couple wonderful seizure free days, things are not going as well. As > I posted, had a drop that ended up with six stitches in his lip. We've > been seeing more drops as well the past few days which we hadn't been seeing > lately. We last lowered the Zonegran (tiny drop 12.5mg) on July 19. It's got > a 48-60 hours 1/2life. The seizures started back on July 26. And the last > drop of his Klonipin was June 28. Ketones always stay high. We haven't been > making any changes. We tried carnosine 2x a day last week, but have only > been giving it at night because has seemed irritable. We'll probably > put it on the back burner for now just to eliminate all variables. > > We're at a 4:1 ratio right now. I'm debating dropping th ratio to 3.5. I'm > wondering with all the med reductions if the ratio is too high and could > possibly be causing seizures. > > Any thoughts/advice? Just trying to figure out what went awry. > > ashley > 's mom, age 4, autism, nonverbal, possible LGS, keto kid since 5/02 > > > " 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 2, 2002 Report Share Posted August 2, 2002 , Fortunately, Rohan is not having drops now (knock on wood). Another thing I've wondered is whether there is sudden drop in glucose levels. Is there any type of helmet that could wear to protect his face? I know some kids on the list had something like a hockey helmet. Hope you find an answer soon. Saro Re: Lower the ratio? > Date: Wed, Jul 31, 2002, 2:48 PM > > > , > The first ever drop sz my son had was about 4 weeks after he'd > gone med-free on the KGD. This was 8 yrs after he started having > sz. He had another a few days later. The first time his lip and the > next his chin had to be glued. He also cracked two front teeth. > He's had a few drop sz since then and my thoughts are that the ketones > were too high. Another confusing thing is that we'd tried codliver oil > (tiny amount) and given it up just before these drop sz. on almost all > the times. > > I thought I'd share this even though it might not be of any help. > Saro.....Rohan's mum > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Saro, thanks for sharing! The drops are the absolute worse. Come out of nowhere and the injuries.... I swear 's lip is never going to heal. A couple drop seizures pulled on the stitches so it's not healing as well as it should. I don't know why he's started having drops again after such a good run. So far our injuries have just been bumps, bruises and stitches. I always worry about his teeth. Is Rohan still having drops? Do you really think it's related to high ketones? We've been less than methodical about recording " data " , but I'm starting to be really meticulous. I'll be curious to see if there's any correlation. ashley alex's mom ---------- To: <ketogenic > Subject: Re: Lower the ratio? Date: Wed, Jul 31, 2002, 2:48 PM , The first ever drop sz my son had was about 4 weeks after he'd gone med-free on the KGD. This was 8 yrs after he started having sz. He had another a few days later. The first time his lip and the next his chin had to be glued. He also cracked two front teeth. He's had a few drop sz since then and my thoughts are that the ketones were too high. Another confusing thing is that we'd tried codliver oil (tiny amount) and given it up just before these drop sz. on almost all the times. I thought I'd share this even though it might not be of any help. Saro.....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 << I swear 's lip is never going to heal >> Hi , This is a little off the topic, but you can try putting vitamin E topically on his lip to help it heal. I've tried it on myself and molly for various things, and it works really well for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Saro, We've thought about a different helmet, but we waiver back and forth on the quality of life issue vs. safety. Of course if things get much worse, there won't be a choice. Hopefully that won't come to pass. Interesting thought about the glucose levels. I think next time he has one, I'll check. Our neuro also suggested that he could possibly be getting dehydrated (very hot where we are). So we're trying to get lots of liquids down. The stitches came out of his lip this morning. Lucky his other sz did not do any damage to the original injury. Yesterday was a better day as well, so hopefully we'll be trending up now. Thanks, ashley alex's mom ---------- To: <ketogenic > Subject: Re: Lower the ratio? Date: Thu, Aug 1, 2002, 11:25 PM Is there any type of helmet that could wear to protect his face? I know some kids on the list had something like a hockey helmet. Hope you find an answer soon. Saro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Thanks , I'll try it! ashley ---------- From: sokulski@... To: ketogenic Subject: Re: Lower the ratio? Date: Fri, Aug 2, 2002, 7:17 AM Hi , This is a little off the topic, but you can try putting vitamin E topically on his lip to help it heal. I've tried it on myself and molly for various things, and it works really well for us. Quote Link to comment Share on other sites More sharing options...
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