Started 6 days, 9 hours ago (2009-11-25 08:29:00)
by kristinsmom07
Well, first I would say you need to find a better neuro or atleast
a second opinion. I think when we did lamictal we did generic but seizures meds are ones where it can really make a difference. I would want to try the brand name and see if its any better. If its not any better you need to push to try something else. Kidney issues can affect what you can use but there are still a lot of ...
Started 2 weeks, 5 days ago (2009-11-11 21:13:00)
by kristinsmom07
Okay, there is no one here I guess. Maybe if I start... Kristin is 4, underlying
brain disorder and intractable epilepsy. She is having a rough time lately with the seizures. Just talked to Hopkins today. They pretty much said except diet and surgery they don't have anything to offer. Not nice to hear. We're going to go to CHOP to see if they think its worth trying the diet again or any ...
Started 1 month ago (2009-11-01 00:11:00)
by kristinsmom07
We have switched seizure meds MANY times. I think you should since it has affected his demeanor so much. Quality of life means not just seizure control but being able to live
a good life too. Topamax is a strong drug. Keppra might make him sleepy at first but he should adjust. The biggest side effect is moodiness, some kids get really aggressive so let your doc know if that happens. ...
Started 4 weeks, 1 day ago (2009-11-02 07:10:00)
by sks1973
((((Kari))))
I'm sorry! I've been away from the board, on vacation last week with the boys. They had a week off for fall break, so we took a trip. :)
Oh, I completely know understand being at the last resort! We didn't struggle with developmental issues, but I know and understand that
severity of the seizures and drugs not working.
You know what I'm going to say. ;) Go for the ...
Started 1 month ago (2009-10-31 20:15:00)
by lcmccabe2005
Be sure you ask questions about the future-like driving, as it is
not too far off. He may need to be seizure free for a certain amount of time to get a license. Also, try to ascertain if his friends have noticed anything. The problem is, by the time he is in high school, life moves very fast. He will have to keep up in school and his activiites. They are rarely home and when they are, they ...
Started 1 month, 3 weeks ago (2009-10-07 20:04:00)
by spedlaw
My daughter has been on the
ketogenic diet for over 9 years. It took a while and some meds adjustment but she is seizure free during the day. I hope that it helps your daughter.
Started 1 month, 2 weeks ago (2009-10-15 16:48:00)
by sks1973
How's it going?!
Jackson was so dopey when he started it until his little body adjusted to even .0165 increases! He was just zoned out for a couple of days for a few hours after he had his meds. What type are you using? We had to start weaning because
name brand wafers are not longer manufactured.
We're 12 weeks into the 24 week wean. :) It's hard to believe we started it that ...
Started 2 months ago (2009-09-29 21:56:00)
by kristinsmom07
I'm glad to hear things are better and school is going so well. Its crazy the difference between generic and name brand. I know you're not here too much these days but what about some new pics! :) Great to hear from you.
Kari
Started 2 months ago (2009-10-01 21:18:00)
by kristinsmom07
HI Marnie! Great to hear from you. Pretty quiet around here for the most part. I'm glad to hear things are going pretty well and that you have time to think about naked cartwheels! Hope things settle down and the
neuro is helpful. I know you guys did tons of inpatient testing a while ago. I guess nothing major came of it? Hope to see you around here more. Krisitns been having a rough time ...
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