Re: ?'s about epilepsy

[Guest guest]

e,

I know that EVERY time my son has an illness his seizures are worse. A lot of times when his seizures get worse I know to start looking for something wrong like an ear infection. It is very often our trigger that he has an ear infection. My son is also on Keppra (and Nitrazepam and Zonegram) and I know that we have to play with doses ALL the time. When something starts to go bad we start going up on one or lowering another. His body gets used to it and we know we need to make a change. I usually don't do alot with the doses when he is sick cause I know thats why his seizures is worse. I hope this helps and good luck.

Heidi

[Guest guest]

Hi ! Sounds like we have a lot in common right now! and Lindsey are also battling an ear infection. Luckily, i've been able to keep the fever down with ibuprofen and we haven't had any "big" seizures. The girls are also on Keppra. We sought a second opinion with an epileptologist a couple of months ago. He put us on Keppra three times daily instead of two and is really pushing the dose. I think going to three times a day has helped with the break- through seizures we were seeing late in the afternoon and early evening.

I don't know if this is an option for Chelsea or not. He said most neuros would think he was crazy by going 3X a day on Keppra. If you're not comfortable with upping the dose, you could split it into three smaller doses and see if it helps. I know the twins would have good coverage in the morning and early afternoon but, then our afternoons and evenings were full of seizures as they were past the peak level of the meds.

As far as the increase in seizures, we always see that with an illness. Illness definitely lowers the threshold. I just usually try and make the girls rest as much as possible and limit their activity. Very hard to do sometimes when the pain reliever kicks in and they are feeling fine.

I hope Chelsea gets better soon! Good luck.

Kim - Mom to and Lindsey (3) Partial Complex I

?'s about epilepsy

Hi all, This is for anyone who is dealing with a difficult epilepsy, like Chelsea. She has what is called reflex epilepsy, her seizures are triggered by outside influences, like staring at lites and the tv. When Chelsea gets ill, her epilepsy is very sensitive, and the slightest stimulation will trigger seizures. She was put on phenobarb almost 5 yrs ago, after being dx'd with epilepsy, and was just weaned off in aug. She has been on Keppra for just over 2 yrs, and from the very 1st dose, it did a much better job controlling her seizures than the phenobarb. And I had thought her seizures were doing much better since she got off phenobarb. . .

She came down with a virus early last week, her 1st sx being a seizure. She had 2 in 36 hrs and then seemed to be better by fri. But When I took her out to run errands, it was like turning on a faucet, she started to cough and gag on secretions and that when on all nite until more seizures started in the wee hrs of the morning. Since then she has had 1 day without seizures. I took her to the ped mon and she does have an ear infection in her rt ear, the one without the tube. Her left ear, with the tube, is just fine. Her ENT has already scheduled her to have the tube replaced on tes, the 2nd of nov. She has been on antibiotics since mon, but the seizures are continuing to persist. Yesterday she was having short staring seizures followed by gagging spells, which she only has when having trouble manging her secretions. Today, she has been awake and alert most of the day (except after the "big one" first thing this am), but everytime she plays and gets active or stimulated, she is having tonic seizures, stiff, staring, cyanotic, with very mild facial convulsions. It has been very upsetting to her and me (but you would think I would be used to it by now. . . )

Her Keppra has been increased about a handful of times over the past year. Evertime it is increased, her seizures stop, but then a few months later, an illness hits and she ends up like this. I think she is maxed out on the Keppra. I am waiting to hear back from her neuro about what I should do. I am hoping it in not adding another med again. She ahd been doing phenominal since getting her off phenobarb, has been doing things I haven't seen her do in years, like blowing raspberries with her tongue, and rolling to the side.

I guess my ? is, what are others experience with Keppra? Do you find your child acclimates to it very quickly and the seizures return? Or do any of you notice that ear infections really lower the threshold for seizures. Chelsea does have seizures while cutting teeth, so I often wonder if she is just particularly sensitive to inflammation.

I am just totally bummed right now! It looks like she is going to miss her school Halloween party tomorrow, and she missed every holiday party last year because of illness and seizures. And, once again, she has gone from doing just awesome, to completely crashing.

Thanks in advance=)

Krisitne, Chelsea's mom, 7, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

Sorry about spelling your name incorrectly, e!!

Kim

?'s about epilepsy

Hi all, This is for anyone who is dealing with a difficult epilepsy, like Chelsea. She has what is called reflex epilepsy, her seizures are triggered by outside influences, like staring at lites and the tv. When Chelsea gets ill, her epilepsy is very sensitive, and the slightest stimulation will trigger seizures. She was put on phenobarb almost 5 yrs ago, after being dx'd with epilepsy, and was just weaned off in aug. She has been on Keppra for just over 2 yrs, and from the very 1st dose, it did a much better job controlling her seizures than the phenobarb. And I had thought her seizures were doing much better since she got off phenobarb. . .

She came down with a virus early last week, her 1st sx being a seizure. She had 2 in 36 hrs and then seemed to be better by fri. But When I took her out to run errands, it was like turning on a faucet, she started to cough and gag on secretions and that when on all nite until more seizures started in the wee hrs of the morning. Since then she has had 1 day without seizures. I took her to the ped mon and she does have an ear infection in her rt ear, the one without the tube. Her left ear, with the tube, is just fine. Her ENT has already scheduled her to have the tube replaced on tes, the 2nd of nov. She has been on antibiotics since mon, but the seizures are continuing to persist. Yesterday she was having short staring seizures followed by gagging spells, which she only has when having trouble manging her secretions. Today, she has been awake and alert most of the day (except after the "big one" first thing this am), but everytime she plays and gets active or stimulated, she is having tonic seizures, stiff, staring, cyanotic, with very mild facial convulsions. It has been very upsetting to her and me (but you would think I would be used to it by now. . . )

Her Keppra has been increased about a handful of times over the past year. Evertime it is increased, her seizures stop, but then a few months later, an illness hits and she ends up like this. I think she is maxed out on the Keppra. I am waiting to hear back from her neuro about what I should do. I am hoping it in not adding another med again. She ahd been doing phenominal since getting her off phenobarb, has been doing things I haven't seen her do in years, like blowing raspberries with her tongue, and rolling to the side.

I guess my ? is, what are others experience with Keppra? Do you find your child acclimates to it very quickly and the seizures return? Or do any of you notice that ear infections really lower the threshold for seizures. Chelsea does have seizures while cutting teeth, so I often wonder if she is just particularly sensitive to inflammation.

I am just totally bummed right now! It looks like she is going to miss her school Halloween party tomorrow, and she missed every holiday party last year because of illness and seizures. And, once again, she has gone from doing just awesome, to completely crashing.

Thanks in advance=)

Krisitne, Chelsea's mom, 7, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Heidi & Kim, You all don't know how much this means to me that I can still find support here! You guys are great!

Heidi, How often are you "playing" with 's med doses? ( Am I remembering your son's name right?). It has seemed that since CHelsea started weaning off phenobarb, that she has needed her Keppra increased a few times. After talkning to the neuro's nurse yesterday, I was told she is on the max dose and raising the dose isn't going to do any good. Most drs have found that Keppra only goes so far, and then it doesn't work any better, even with an increased dose. Have you found that by lowering his dose for awhile and then increasing it again, helps the Keppra work better? (I hope that made sense, a little sleep deprived over here!)

Kim, I was very interested in the 3x's a day dosing with Keppra. It seems that the majority of her actvity was happening at her trough levels. I do know that Keppra has a fairly short half life, about 6 hrs, and then levels start to drop. I may inquire about this when we see her neuro in 2 weeks. Do you mind if I print your email to show to him (I will black out personal info)? Don't worry about the name, that always happens=)

Just like flicking some unseen switch, CHelsea's seizures have stopped! She is back to her normal activity level and even laid awake ALL nite last nite! SO she did miss her Halloween Party, because I didn't want to push it. Her neuro did recommend starting Lamictal, but I am going to hold off for now, unless her activity starts back up. I know there has been many discussions on this drug, but I don't know when I will get a chance to go thru the archives.

Does Lamictal cause sleepiness/sedation? What are any other side effects that are concerning? (I know there is rare incidence of rash). Why does it have to be increased slowly?

That's all the ?'s I can think of for now. THANKS!!

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Yes, you may use my info. I honestly think going to 3Xday Keppra has helped reduce the number of seizures we are seeing. We also went to 3Xday Klonipin so that may be weighing in also. Either way, we are having more good days seizure wise than bad lately. But, I will go on to say that they have become more moody. Our neuro told me to try and push the girls to 1200mg a day (they are 3 and weigh between 31-33 lbs). He told me to stop if they became too irritable. I am up to 1100mg on Lindsey and probably will be stopping there. It's so hard to tell if the behavior issues are part of being "3" or medication side-effects.

As far as Lamictil...it's still sitting in my cupboard unused as we refuse to have the girls on 4 seizure meds at one time. I just remember the nurse telling me about the possibility of the rash and therefore the need to go on it very slowly. Sorry, I can't be of more help.

I am so glad to hear Chelsea is getting better. It's always so nice to see them round the corner and regain strength. Sorry she had to miss her party though.

Good luck with the neuro!

Kim - Mom to and Lindsey (3) Partial Complex I

Re: ?'s about epilepsy

Thanks Heidi & Kim, You all don't know how much this means to me that I can still find support here! You guys are great!

Heidi, How often are you "playing" with 's med doses? ( Am I remembering your son's name right?). It has seemed that since CHelsea started weaning off phenobarb, that she has needed her Keppra increased a few times. After talkning to the neuro's nurse yesterday, I was told she is on the max dose and raising the dose isn't going to do any good. Most drs have found that Keppra only goes so far, and then it doesn't work any better, even with an increased dose. Have you found that by lowering his dose for awhile and then increasing it again, helps the Keppra work better? (I hope that made sense, a little sleep deprived over here!)

Kim, I was very interested in the 3x's a day dosing with Keppra. It seems that the majority of her actvity was happening at her trough levels. I do know that Keppra has a fairly short half life, about 6 hrs, and then levels start to drop. I may inquire about this when we see her neuro in 2 weeks. Do you mind if I print your email to show to him (I will black out personal info)? Don't worry about the name, that always happens=)

Just like flicking some unseen switch, CHelsea's seizures have stopped! She is back to her normal activity level and even laid awake ALL nite last nite! SO she did miss her Halloween Party, because I didn't want to push it. Her neuro did recommend starting Lamictal, but I am going to hold off for now, unless her activity starts back up. I know there has been many discussions on this drug, but I don't know when I will get a chance to go thru the archives.

Does Lamictal cause sleepiness/sedation? What are any other side effects that are concerning? (I know there is rare incidence of rash). Why does it have to be increased slowly?

That's all the ?'s I can think of for now. THANKS!!

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions.