Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 I'm amazed at the doses of Keppra you guys (in general) are on. Maybe your kids are bigger? Jake's on 250mg, and his neuro said we could try pushing him up to a max of 500/day. Sounds so much lower than most (which I guess is actually fine w/ me). Jake is 7 and 47lbs. I empathize w/ your diet/drug battle . We are still on the diet - almost 6 years now - because it's been better than all the meds, none of which have worked. Tough choices we all have to make, and tough decisions our kids have to live with. Hang in there. Barb Swoyer, Jake's mom Re: Help/Keppra--Barb > > > Barb, you asked about reactions to Keppra that other parents have seen. I > will say that the diet completely changed the way my daughter metabolized > that medication. It wasn't a big deal before the diet, and she was at > 4000mg/day at 20kg. That's a humongous dose, 1000mg above the recommended > ceiling for an adult (at however many kgs adults average). She didn't show > much in the way of side effects other than a subtle dulling of cognition, > but that came about so insidiously that we hadn't really noticed it. > > THEN came the diet while she was at those levels and KA-BOOM! It all blew > up in our faces. Since she has almost no volitional control over her > movements, so she cannot really express aggression as kids typically might. > What we saw from the Keppra was episodes of severe muscle rigidity. You may > remember my frantic pleas for advice on that. After we were able to get our > neuro to agree to a wean to eliminate Keppra as a possible cause for the > rigid episodes, the rigidity improved with every decrease and was eliminated > completely by the time she reached 500mg/day. We also saw wonderful > cognitive brightening and a much, much happier disposition (not that she was > particularly crabby, but she is just so much happier on less Keppra!). > > I'm sorry to hear is having trouble that you suspect may be due to > the Keppra. While our neuro assured us that aggression was a common side > effect in pediatrics only at _high_ levels, we found this personally to no > longer be true when taken in conjunction with the diet. Other people's > mileage may vary... > > Rose-Marie, > mom to (age 6) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 Rose-Marie, It sounds like one of my concerns, if we go back on the diet, will be to talk to 's doctor about decreasing her Keppra. She is taking 3000mg a day along with 375mg of Depakote. I understand there is another group of concerns with the Depakote and diet. doesn't want to be a keto kid again, but as her doctor told her, we can't keep putting her on different medications that are making her sicker. After status from the Zonagran and drop seizures from the Klonopin, her doctor would have a hard time talking me into trying another drug. went through six drugs before she went on the diet five years ago. She has been on four since coming off two years ago, and had serious trouble with two of them. We give medications to our children to make them better, not worse. I know the diet is no more of a cure all, but at least the side effects were easier to deal with, and she was alert the three and a half years she was on it. The diet controlled all but her simple partials, and she was off medications for over a year of that time. D. Re: Help/Keppra--Barb Barb, you asked about reactions to Keppra that other parents have seen. I will say that the diet completely changed the way my daughter metabolized that medication. It wasn't a big deal before the diet, and she was at 4000mg/day at 20kg. That's a humongous dose, 1000mg above the recommended ceiling for an adult (at however many kgs adults average). She didn't show much in the way of side effects other than a subtle dulling of cognition, but that came about so insidiously that we hadn't really noticed it. THEN came the diet while she was at those levels and KA-BOOM! It all blew up in our faces. Since she has almost no volitional control over her movements, so she cannot really express aggression as kids typically might. What we saw from the Keppra was episodes of severe muscle rigidity. You may remember my frantic pleas for advice on that. After we were able to get our neuro to agree to a wean to eliminate Keppra as a possible cause for the rigid episodes, the rigidity improved with every decrease and was eliminated completely by the time she reached 500mg/day. We also saw wonderful cognitive brightening and a much, much happier disposition (not that she was particularly crabby, but she is just so much happier on less Keppra!). I'm sorry to hear is having trouble that you suspect may be due to the Keppra. While our neuro assured us that aggression was a common side effect in pediatrics only at _high_ levels, we found this personally to no longer be true when taken in conjunction with the diet. Other people's mileage may vary... Rose-Marie, mom to (age 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 is 12 and 80 lbs. Re: Re: Help/Keppra--Barb I'm amazed at the doses of Keppra you guys (in general) are on. Maybe your kids are bigger? Jake's on 250mg, and his neuro said we could try pushing him up to a max of 500/day. Sounds so much lower than most (which I guess is actually fine w/ me). Jake is 7 and 47lbs. I empathize w/ your diet/drug battle . We are still on the diet - almost 6 years now - because it's been better than all the meds, none of which have worked. Tough choices we all have to make, and tough decisions our kids have to live with. Hang in there. Barb Swoyer, Jake's mom Re: Help/Keppra--Barb > > > Barb, you asked about reactions to Keppra that other parents have seen. I > will say that the diet completely changed the way my daughter metabolized > that medication. It wasn't a big deal before the diet, and she was at > 4000mg/day at 20kg. That's a humongous dose, 1000mg above the recommended > ceiling for an adult (at however many kgs adults average). She didn't show > much in the way of side effects other than a subtle dulling of cognition, > but that came about so insidiously that we hadn't really noticed it. > > THEN came the diet while she was at those levels and KA-BOOM! It all blew > up in our faces. Since she has almost no volitional control over her > movements, so she cannot really express aggression as kids typically might. > What we saw from the Keppra was episodes of severe muscle rigidity. You may > remember my frantic pleas for advice on that. After we were able to get our > neuro to agree to a wean to eliminate Keppra as a possible cause for the > rigid episodes, the rigidity improved with every decrease and was eliminated > completely by the time she reached 500mg/day. We also saw wonderful > cognitive brightening and a much, much happier disposition (not that she was > particularly crabby, but she is just so much happier on less Keppra!). > > I'm sorry to hear is having trouble that you suspect may be due to > the Keppra. While our neuro assured us that aggression was a common side > effect in pediatrics only at _high_ levels, we found this personally to no > longer be true when taken in conjunction with the diet. Other people's > mileage may vary... > > Rose-Marie, > mom to (age 6) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 We are on Kepra and have been for two years or so. Jackie has been on the keto for a year, and is now on depakote and kepra. She was on 1250 mg per day at 52 punds, and we easily weaned the first pill. Now for the second, things have gotten a bit more ugly. She started having GM's, once or twice a night, and that was when we dropped a 1/4 pill. Upped it back an 1/8 and she had one gm. THis could be withdrawls seizures, we're not sure. We have seen a slow but steady improvement in her cognitive ability, so we're sort of in a holding pattern. Wish I could help you all out more, but can't. HEart and prayers go with you. moither of Jackie age 7 kepra and depakote. Quote Link to comment Share on other sites More sharing options...
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