Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Kim Thanks so much for your concern=) I had saved your last email, I just haven't gotten around to responding to it yet, sorry! I did speak to the neuro about the 3x's a day Keppra, well thru the nurse actually. They had never heard of that being done, but did look into it and felt it was not a good option, I geuss the literature they read said there was no difference in blood levels at 2 or 3x's aday. Chelsea's seizures did seem to stop, but she had more last mon, so we started her on the Lamictal, 5mgs in the am and 10 in the pm, she will move up next mon to 15mgs 2x's per day. She had both her ear tubes replaced last tues, and handled very well. Hopefully she can avoid ear infections the rest of the winter. Right now she is having a few good days and then one bad day. Today is a bad day unfortunalty, but she seems alright. I think it is more stressful on me because she has no memory of the seizures other than feeling crappy after. The simple partial ones that she does remember, do seem to bother her. ? about the Lamictal. At what dose does it become effective. Chelsea will eventually be worked up to 100mgs or so. I hope it starts to work before then, because it is going to be a long time before she is up to that dose. Krisitne, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Kim Thanks so much for your concern=) I had saved your last email, I just haven't gotten around to responding to it yet, sorry! I did speak to the neuro about the 3x's a day Keppra, well thru the nurse actually. They had never heard of that being done, but did look into it and felt it was not a good option, I geuss the literature they read said there was no difference in blood levels at 2 or 3x's aday. Chelsea's seizures did seem to stop, but she had more last mon, so we started her on the Lamictal, 5mgs in the am and 10 in the pm, she will move up next mon to 15mgs 2x's per day. She had both her ear tubes replaced last tues, and handled very well. Hopefully she can avoid ear infections the rest of the winter. Right now she is having a few good days and then one bad day. Today is a bad day unfortunalty, but she seems alright. I think it is more stressful on me because she has no memory of the seizures other than feeling crappy after. The simple partial ones that she does remember, do seem to bother her. ? about the Lamictal. At what dose does it become effective. Chelsea will eventually be worked up to 100mgs or so. I hope it starts to work before then, because it is going to be a long time before she is up to that dose. Krisitne, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 e, I hope the Lamictal works well for Chelsea. I don't know anything about it as we haven't been on it. (It's still in my cupboard...) Maybe someone else on the list can help you there. I know exactly what you mean about "good days" and "bad days." We experience the same thing here. The girls are also not affected by their seizures. They are quick eye flutters that only last a few seconds. They just pick up where they left off. It just amazes me. Good luck with the Lamictal! Kim Re: Chelsea update/Kim Kim Thanks so much for your concern=) I had saved your last email, I just haven't gotten around to responding to it yet, sorry! I did speak to the neuro about the 3x's a day Keppra, well thru the nurse actually. They had never heard of that being done, but did look into it and felt it was not a good option, I geuss the literature they read said there was no difference in blood levels at 2 or 3x's aday. Chelsea's seizures did seem to stop, but she had more last mon, so we started her on the Lamictal, 5mgs in the am and 10 in the pm, she will move up next mon to 15mgs 2x's per day. She had both her ear tubes replaced last tues, and handled very well. Hopefully she can avoid ear infections the rest of the winter. Right now she is having a few good days and then one bad day. Today is a bad day unfortunalty, but she seems alright. I think it is more stressful on me because she has no memory of the seizures other than feeling crappy after. The simple partial ones that she does remember, do seem to bother her. ? about the Lamictal. At what dose does it become effective. Chelsea will eventually be worked up to 100mgs or so. I hope it starts to work before then, because it is going to be a long time before she is up to that dose. Krisitne, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 e, I hope the Lamictal works well for Chelsea. I don't know anything about it as we haven't been on it. (It's still in my cupboard...) Maybe someone else on the list can help you there. I know exactly what you mean about "good days" and "bad days." We experience the same thing here. The girls are also not affected by their seizures. They are quick eye flutters that only last a few seconds. They just pick up where they left off. It just amazes me. Good luck with the Lamictal! Kim Re: Chelsea update/Kim Kim Thanks so much for your concern=) I had saved your last email, I just haven't gotten around to responding to it yet, sorry! I did speak to the neuro about the 3x's a day Keppra, well thru the nurse actually. They had never heard of that being done, but did look into it and felt it was not a good option, I geuss the literature they read said there was no difference in blood levels at 2 or 3x's aday. Chelsea's seizures did seem to stop, but she had more last mon, so we started her on the Lamictal, 5mgs in the am and 10 in the pm, she will move up next mon to 15mgs 2x's per day. She had both her ear tubes replaced last tues, and handled very well. Hopefully she can avoid ear infections the rest of the winter. Right now she is having a few good days and then one bad day. Today is a bad day unfortunalty, but she seems alright. I think it is more stressful on me because she has no memory of the seizures other than feeling crappy after. The simple partial ones that she does remember, do seem to bother her. ? about the Lamictal. At what dose does it become effective. Chelsea will eventually be worked up to 100mgs or so. I hope it starts to work before then, because it is going to be a long time before she is up to that dose. Krisitne, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. 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.