Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 sjlit@... wrote: > Hi , > > What is the name of this drug? Just posted to , generic name is sulthiame, brand name is ospolot > My son did very well on Diamox as a monotherapy for a long time after > we weaned the diet, so I know that type of drug is effective for him. > > I hope it helps Jess. Thanks. We are giving keppra a shot (but its only getting one shot, I told neuro no upping dose, playing around adding drugs if it doesn't work first time around) cuz none of us are ready for another hospital admission after the last month, even a planned one Are you looking for something else for Joe at the moment? > > > Thanks! > > , > mom to Joe, former keto-kid, currently on Diamox and Zonegran > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi , I think keppra is very addictive. Rohan seemes to have a really bad day about two weeks after increasing a dose. He's on 1500mg a day and they said he could go upto 2000mg but we can't go on upping the dose. Just after an increase he's OK but on bad days instead of one or two sz (as he used to) he has several generalized ones as well as constant threatened sz. I'm dreading having to wean this one day. I do hope the new drug works well for Jess. I have lost the thread but isn't Diamox keeping her acidic enough anymore? Saro mmc@... wrote: >We are giving keppra a shot (but its only getting one shot, I >told neuro no upping dose, playing around adding drugs if it doesn't >work first time around) cuz none of us are ready for another hospital >admission after the last month, even a planned one >Are you looking for something else for Joe at the moment? > > > > >>Thanks! >> >>, >>mom to Joe, former keto-kid, currently on Diamox and Zonegran >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Jay wrote: > Hi , > I think keppra is very addictive. Rohan seemes to have a really bad > day > about two weeks after increasing a dose. He's on 1500mg a day and > they said he could go upto 2000mg but we can't go on upping the dose. > Just after an increase he's OK but on bad days instead of one or two > sz (as he used to) he has several generalized ones as well as constant > > threatened sz. I'm dreading having to wean this one day. That sucks......I went to bed Friday night, after upping dose from 500 to 750 mg per day, we are on our way to 1000 mg, and started crying - to have my kid back on these damm drugs again. Funny, I never realized diamox an AED like that even though it is, we used such a small dose and never saw any other effects from it except the acidity, which is what we wanted > I do hope the new drug works well for Jess. I have lost the thread > but isn't Diamox keeping her acidic enough anymore? Nope, obviously not for the past year. Well less than a year, since this past February actually. She has had four seizure bouts this year which means four hospitalizations - previously at her worst, it was always three bouts per year. So I sure hope and pray it works for her too Geuss there's very few easy answers for any of us, which would explain why we are on this list Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi , Just wanted you to know I'm keeping Jess in my thoughts and prayers, too. I know she has a dedicated momma willing to go to the ends of the earth for her. I know the drugs must feel like a big disappointment, after Jess did so well for so long. I have similar feelings about Macie and her backslide...I don't want to do the drugs again unless absolutely necessary, but I don't want to be stubborn about it either if it will help her. That's the trouble, we don't know the answer until we try (i.e. experiment). I just wish I could go back in time and figure out why things worked so well for so long and figure out how to get that back, and I just wish I could find some doctor who would be as interested in her and as interested in the diet as I am....wouldn't we all love that. Maybe in our spare time we should all go to medical school. Take care, Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 > Are you looking for something else for Joe at the moment? > > Thanks for the info on the ospolot. I'll be very interested to hear how it goes for Jess. Several people I know (including us) seem to have had a honeymoon period of around one year where Diamox was effective on it's own, although our neuro says he has patients that stay on it for years (although I don't know as a monotherapy). I'm not looking for anything for Joe at the moment. While he's not having seizures, he always has alot of subclinical " stuff " on his EEGs, and I can't help but think that some of his processing delays and moods have to do with that. (I often think wistfully of the perfectly clean EEG he had about 6 months into the diet, after we cut Depakote and before we started to wean Klonopin wean, which was so dreadful.) But he's not doing poorly enough (and the side effects of the drugs seem almost nonexistent) to rock the boat. Are you adding opsolot to the Keppra now, or it is waiting in the wings should Keppra not work for Jess? Again, best of luck to you and Jess! Joe's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 sjlit@... wrote: > Thanks for the info on the ospolot. I'll be very interested to hear > how it > goes for Jess. Several people I know (including us) seem to have had > a > honeymoon period of around one year where Diamox was effective on it's > own, although > our neuro says he has patients that stay on it for years (although I > don't > know as a monotherapy). Yup, we had two years with it and then for no apparent reason..... > Are you adding opsolot to the Keppra now, or it is waiting in the > wings > should Keppra not work for Jess? Waiting to give the Keppra one shot, for the simple reason that starting the opsolot with the diet will entail a hospital stay and she only came home two weeks ago from almost a three week hospitalization. Needless to say none of us are anxious to return at the moment....... > Again, best of luck to you and Jess! Thanks, same to you and Joe Quote Link to comment Share on other sites More sharing options...
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