Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi Barb, I think I am already " sick of meds " again. One just seems to lead to another once they start writing prescriptions, it seems like. Katera's taking 1000 mgs of Keppra per day.... 500 am, 500 pm. That puts her level right about in the middle range. I'd sure like to take it down a tidge..... but the neuro just wants to add the Zonegran and wean the Keppra altogether. I don't know. I don't like the sounds of the Zonegran side effects. She has already had allergic reactions to two drugs..... Tegretol and Ibuprofen.... and Zonegran is apparently one that must be watched for that, as many AEDs are. Ugh. Patti From: Barbara Swoyer To: ketogenic Sent: Friday, March 12, 2004 6:11 AM Subject: Re: Katera update We are glad to have you back, always glad...but not glad for the reason. What a drag. We will help any way we can We did Keppra, have been on for over a year, never got to high on the dose as Jake turned into a bear. I am weaning that and Depakte, I must be going through a " sick of meds " phase. We are only on 1/2 tablet of Keppra per DAY. Barb Swoyer and Jake Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi Barb, I think I am already " sick of meds " again. One just seems to lead to another once they start writing prescriptions, it seems like. Katera's taking 1000 mgs of Keppra per day.... 500 am, 500 pm. That puts her level right about in the middle range. I'd sure like to take it down a tidge..... but the neuro just wants to add the Zonegran and wean the Keppra altogether. I don't know. I don't like the sounds of the Zonegran side effects. She has already had allergic reactions to two drugs..... Tegretol and Ibuprofen.... and Zonegran is apparently one that must be watched for that, as many AEDs are. Ugh. Patti From: Barbara Swoyer To: ketogenic Sent: Friday, March 12, 2004 6:11 AM Subject: Re: Katera update We are glad to have you back, always glad...but not glad for the reason. What a drag. We will help any way we can We did Keppra, have been on for over a year, never got to high on the dose as Jake turned into a bear. I am weaning that and Depakte, I must be going through a " sick of meds " phase. We are only on 1/2 tablet of Keppra per DAY. Barb Swoyer and Jake Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi , <<**Were you checking her glucose during that period? I know she would have had no ketones by then, just curious to know if her glucose went high high....>> No..... I didn't think to do that. I guess I wouldn't have known what level would be considered " high " for a non-Keto kid..... I would only have recognized a glucose of over 85 to be unusually high for her on the diet. But, anyway, I didn't even think about it. <<**Yikes - they want her back on back to 2 AEDs again? Bet your thrilled with that idea - not They are thinking the 2 in combination might be a goodie, or with the aim of weaning the keppra whilst introducing the zonegran? Are either of those specifically 'designed' for tonic clonics?>> No, he wants to wean the Keppra. I am pretty sure that I'm not going to go for the Zonegran. I don't like the sounds of it. What I read online was that it is for partial seizures in adults, so I don't know why he's thinking of this one. ??? And I also read that it's usually used as an add-on drug. He's going to have to work a little harder to talk me into this one. We don't see him until April 1st......and they are sending the script and some samples in the mail.... but I don't think I'll start it. << **Any result back yet?>> The MRI was negative for any of the changes they were looking for. I guess that's a good thing....since they were expecting some changes associated with degenerative, progressive disease..... but now it just leaves us not knowing what's up with her other problems. No news is good news, right? Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Hi Glenna, You'll have to let me know what you think after you read BTVC. I am thinking of keeping Katera on SCD but moving her back into ketosis. Not that I'm thrilled at the idea of dusting off my scale, but........ Patti ----- Original Message ----- I ordered the " Vicious Cycle " book and got it today. I'm anxious to dig into it. We've decided to give Macie a break from keto if we can do it without all you-know-what breaking loose. We are adding Lamictal ever so slowly. I want to concentrate on getting her healthy and in balance if we do go keto-free, so hopefully if we end up going back to it we'll see better success. Best wishes to Katera! Glenna Quote Link to comment Share on other sites More sharing options...
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