Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi Penny-- Hang in there, kiddo. It breaks my heart to hear about Lexxie's balance issues...hanging her head, struggling to sit.... But the balance stuff may come back once all the med adjustments have had time to settle. Changes, even good ones, disrupt the status quo in the system. That may mean having to relearn balance and actions. And hooray about the improved visible seizures!! You're looking at better than 90% improvement for them, which is something huge to celebrate. Yahoo! I'm doing a happy dance here. If it's any help (yah, right), 's EEG is also very, very pathetic. Constant background activity and spiking--sounds nearly identical to is'. The VEEG neuro was worried she is in a constant seizure (>600 in 6 hours), but once he saw what a REAL seizure looked like both clinically and as brain waves, decided the constant " background chatter " is simply that. She is alert and able to learn and communicate when that is the only thing going on. Here we hoped the EEG would help decipher what is and isn't seizures...and in the end we came to an agreement to only count as " actual " seizures those episodes where her outward behavior is " disconnected " from the rest of the world (it's pretty obvious to those who know her). So it's all still very much a clinical count after all, right where we started. Not sure why I rattled on about that, but I guess I have come to take the EEG readings with a wee grain of salt. I hope you can find some comfort in knowing you aren't alone. Of course, I'm hoping the EEG will be clean, but if it isn't, I hope you'll count the improvements that you see rather than putting too much trust in a test. I know what you mean about the wheelchair being a let down. It represents a " milestone " none of us wants. But hey, maybe it will the kicker to spur is on to prove to us that she doesn't really need it, right? After all, that girl likes a good challenge, and now that the money has been spent, she has a good challenge to prove she doesn't really need it! Here's to days of better balance, Rose-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi Penny-- Hang in there, kiddo. It breaks my heart to hear about Lexxie's balance issues...hanging her head, struggling to sit.... But the balance stuff may come back once all the med adjustments have had time to settle. Changes, even good ones, disrupt the status quo in the system. That may mean having to relearn balance and actions. And hooray about the improved visible seizures!! You're looking at better than 90% improvement for them, which is something huge to celebrate. Yahoo! I'm doing a happy dance here. If it's any help (yah, right), 's EEG is also very, very pathetic. Constant background activity and spiking--sounds nearly identical to is'. The VEEG neuro was worried she is in a constant seizure (>600 in 6 hours), but once he saw what a REAL seizure looked like both clinically and as brain waves, decided the constant " background chatter " is simply that. She is alert and able to learn and communicate when that is the only thing going on. Here we hoped the EEG would help decipher what is and isn't seizures...and in the end we came to an agreement to only count as " actual " seizures those episodes where her outward behavior is " disconnected " from the rest of the world (it's pretty obvious to those who know her). So it's all still very much a clinical count after all, right where we started. Not sure why I rattled on about that, but I guess I have come to take the EEG readings with a wee grain of salt. I hope you can find some comfort in knowing you aren't alone. Of course, I'm hoping the EEG will be clean, but if it isn't, I hope you'll count the improvements that you see rather than putting too much trust in a test. I know what you mean about the wheelchair being a let down. It represents a " milestone " none of us wants. But hey, maybe it will the kicker to spur is on to prove to us that she doesn't really need it, right? After all, that girl likes a good challenge, and now that the money has been spent, she has a good challenge to prove she doesn't really need it! Here's to days of better balance, Rose-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Penny, I'm betting you WILL see a change for the better on her EEG. We had horrible EEGs just like you describe... the background alone was enough to scare us, let alone the " real " seizure activity. After 8 wks. on the diet, her EEG was normal. Only a few " iffy " blips which the neuro said he would have looked past completely if he didn't know how awful the patterns had been previously. Our keto team agreed. A second EEG at 6 months on the diet was completely clear.... So, I'm telling ya, It can happen!! You've seen such a great reduction of seizures in is, I just have to believe her EEG will show that, too. Cammie > Hello everyone,,, > > well alittle over two months now and I have to say we are still > hanging in there. > > Seizures are down to maybe one a day on a good day, to four on a > bad day, (24 hour periods) and I only count what I can see,,, see > is still not herself,, not a word out of her, she only had htree > words,,, but htey are gone,,, she is vocal at times, making loud > noices,,, but not a word. > > Her balance is still so off, still has such a hard time holding her > head up, sitting is still a struggle, and forget walking, > > Her wheelchair was delevered this week and it truly was a sad day > for me. > > over the last few weeks,, we took her down 1ml of the trilrptol, > this seemed to lift the fog a bit and give her more awake time... > before the decrease she was sleeping so so much, now we have days > where she does great and days where she still sleeps.... > > I am like a sponge here reading all your post,,, > we do another EEG on May 11th to see if there is any change at all, > from the EEG when she was in the drug coma,,, hopefully it will show > that when she is awake and alert there aarent any seizures, I will > feel so much better knowing she at least is getting some sort of a > break here and there, her last EEG was horrible back in Novemeber, > it showed nothing but background activity all the time and more > spikes then they could count, so I am putting all my hope into it is > at least better and she truly is having some clear spells thru out > the days. > > At least she isnt having 30 or more visable seizures a day! > For that I am grateful. > > Thank you all for all the help in getting going on the diet, it has > been a life saver here. > > I would never have know half the stuff I shouldnt be doing or > watching for is it hadnt been for this group. > > hugs from maine Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Penny, I'm betting you WILL see a change for the better on her EEG. We had horrible EEGs just like you describe... the background alone was enough to scare us, let alone the " real " seizure activity. After 8 wks. on the diet, her EEG was normal. Only a few " iffy " blips which the neuro said he would have looked past completely if he didn't know how awful the patterns had been previously. Our keto team agreed. A second EEG at 6 months on the diet was completely clear.... So, I'm telling ya, It can happen!! You've seen such a great reduction of seizures in is, I just have to believe her EEG will show that, too. Cammie > Hello everyone,,, > > well alittle over two months now and I have to say we are still > hanging in there. > > Seizures are down to maybe one a day on a good day, to four on a > bad day, (24 hour periods) and I only count what I can see,,, see > is still not herself,, not a word out of her, she only had htree > words,,, but htey are gone,,, she is vocal at times, making loud > noices,,, but not a word. > > Her balance is still so off, still has such a hard time holding her > head up, sitting is still a struggle, and forget walking, > > Her wheelchair was delevered this week and it truly was a sad day > for me. > > over the last few weeks,, we took her down 1ml of the trilrptol, > this seemed to lift the fog a bit and give her more awake time... > before the decrease she was sleeping so so much, now we have days > where she does great and days where she still sleeps.... > > I am like a sponge here reading all your post,,, > we do another EEG on May 11th to see if there is any change at all, > from the EEG when she was in the drug coma,,, hopefully it will show > that when she is awake and alert there aarent any seizures, I will > feel so much better knowing she at least is getting some sort of a > break here and there, her last EEG was horrible back in Novemeber, > it showed nothing but background activity all the time and more > spikes then they could count, so I am putting all my hope into it is > at least better and she truly is having some clear spells thru out > the days. > > At least she isnt having 30 or more visable seizures a day! > For that I am grateful. > > Thank you all for all the help in getting going on the diet, it has > been a life saver here. > > I would never have know half the stuff I shouldnt be doing or > watching for is it hadnt been for this group. > > hugs from maine Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Penny, I'm betting you WILL see a change for the better on her EEG. We had horrible EEGs just like you describe... the background alone was enough to scare us, let alone the " real " seizure activity. After 8 wks. on the diet, her EEG was normal. Only a few " iffy " blips which the neuro said he would have looked past completely if he didn't know how awful the patterns had been previously. Our keto team agreed. A second EEG at 6 months on the diet was completely clear.... So, I'm telling ya, It can happen!! You've seen such a great reduction of seizures in is, I just have to believe her EEG will show that, too. Cammie > Hello everyone,,, > > well alittle over two months now and I have to say we are still > hanging in there. > > Seizures are down to maybe one a day on a good day, to four on a > bad day, (24 hour periods) and I only count what I can see,,, see > is still not herself,, not a word out of her, she only had htree > words,,, but htey are gone,,, she is vocal at times, making loud > noices,,, but not a word. > > Her balance is still so off, still has such a hard time holding her > head up, sitting is still a struggle, and forget walking, > > Her wheelchair was delevered this week and it truly was a sad day > for me. > > over the last few weeks,, we took her down 1ml of the trilrptol, > this seemed to lift the fog a bit and give her more awake time... > before the decrease she was sleeping so so much, now we have days > where she does great and days where she still sleeps.... > > I am like a sponge here reading all your post,,, > we do another EEG on May 11th to see if there is any change at all, > from the EEG when she was in the drug coma,,, hopefully it will show > that when she is awake and alert there aarent any seizures, I will > feel so much better knowing she at least is getting some sort of a > break here and there, her last EEG was horrible back in Novemeber, > it showed nothing but background activity all the time and more > spikes then they could count, so I am putting all my hope into it is > at least better and she truly is having some clear spells thru out > the days. > > At least she isnt having 30 or more visable seizures a day! > For that I am grateful. > > Thank you all for all the help in getting going on the diet, it has > been a life saver here. > > I would never have know half the stuff I shouldnt be doing or > watching for is it hadnt been for this group. > > hugs from maine Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 You may still be toxic on medications. Bill penny wrote: > Hello everyone,,, > > well alittle over two months now and I have to say we are still > hanging in there. > > Seizures are down to maybe one a day on a good day, to four on a > bad day, (24 hour periods) and I only count what I can see,,, see > is still not herself,, not a word out of her, she only had htree > words,,, but htey are gone,,, she is vocal at times, making loud > noices,,, but not a word. > > Her balance is still so off, still has such a hard time holding her > head up, sitting is still a struggle, and forget walking, > > Her wheelchair was delevered this week and it truly was a sad day > for me. > > over the last few weeks,, we took her down 1ml of the trilrptol, > this seemed to lift the fog a bit and give her more awake time... > before the decrease she was sleeping so so much, now we have days > where she does great and days where she still sleeps.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 You may still be toxic on medications. Bill penny wrote: > Hello everyone,,, > > well alittle over two months now and I have to say we are still > hanging in there. > > Seizures are down to maybe one a day on a good day, to four on a > bad day, (24 hour periods) and I only count what I can see,,, see > is still not herself,, not a word out of her, she only had htree > words,,, but htey are gone,,, she is vocal at times, making loud > noices,,, but not a word. > > Her balance is still so off, still has such a hard time holding her > head up, sitting is still a struggle, and forget walking, > > Her wheelchair was delevered this week and it truly was a sad day > for me. > > over the last few weeks,, we took her down 1ml of the trilrptol, > this seemed to lift the fog a bit and give her more awake time... > before the decrease she was sleeping so so much, now we have days > where she does great and days where she still sleeps.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hi Penny, I agree with Bill - if you see an intial fog lifting and improvement after a reduction, and then it sort of rises back again, or doesn't completely solve it, especially with excessive sleepiness, then toxicity as a culprit is def up there on the list of possibilities. The balance being off as well would be a def pointer in that direction for us if it were . On the wheelchair note - this has been a toughie for us for the duration of 's epilepsy too - part of me used to think what a relief it would be to not worry about him falling from drops, being off balance, getting tired etc, but the other part of me used to hate the sight of the **** things, despite logic telling me they had can be a definite help and can be such an advantage to so many families. One of 's hosp admissions a couple of yrs ago saw him in a wheelchair most of the time he was in there, er - have to say though that at that point he was on 4 meds at once, and I don't think I could have walked on those doses either.... Then he was actually discharged with a wheelchair (first time ever) after his last revolting admission in Nov/Dec, and it sat in our garage waiting to see how he was going to progress. It was returned to the hospital again about 2 mths ago, turns out we never had to use it, his gait has now normalised and we have slowly seen a resumption of being able to run properly, hop briefly again on each leg, and he even last week regained his ability to properly skip. I credit his overall improvements to losing the benzos and along with them, the ever present toxicity that seemed to be a permanent thing, despite reducing time and time again. But whatever the cause - he is better in all areas than at least a yr, maybe even 2 yrs before the wheelchair was given to us 4 mths ago - so even when things look bleak enough where these sorts of aids are neccessary, it doesn't have to mean they are a permanent thing.... ----- Original Message ----- > You may still be toxic on medications. > > Bill > penny wrote: > > Hello everyone,,, > > > > well alittle over two months now and I have to say we are still > > hanging in there. > > > > Seizures are down to maybe one a day on a good day, to four on a > > bad day, (24 hour periods) and I only count what I can see,,, see > > is still not herself,, not a word out of her, she only had htree > > words,,, but htey are gone,,, she is vocal at times, making loud > > noices,,, but not a word. > > > > Her balance is still so off, still has such a hard time holding her > > head up, sitting is still a struggle, and forget walking, > > > > Her wheelchair was delevered this week and it truly was a sad day > > for me. > > > > over the last few weeks,, we took her down 1ml of the trilrptol, > > this seemed to lift the fog a bit and give her more awake time... > > before the decrease she was sleeping so so much, now we have days > > where she does great and days where she still sleeps.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 > > Hello everyone,,, > > > > well alittle over two months now and I have to say we are still > > hanging in there. > > > > Seizures are down to maybe one a day on a good day, to four on a > > bad day, (24 hour periods) and I only count what I can see,,, see > > is still not herself,, not a word out of her, she only had htree > > words,,, but htey are gone,,, she is vocal at times, making loud > > noices,,, but not a word. > > > > Her balance is still so off, still has such a hard time holding her > > head up, sitting is still a struggle, and forget walking, > > > > Her wheelchair was delevered this week and it truly was a sad day > > for me. > > > > over the last few weeks,, we took her down 1ml of the trilrptol, > > this seemed to lift the fog a bit and give her more awake time... > > before the decrease she was sleeping so so much, now we have days > > where she does great and days where she still sleeps.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 > > Hello everyone,,, > > > > well alittle over two months now and I have to say we are still > > hanging in there. > > > > Seizures are down to maybe one a day on a good day, to four on a > > bad day, (24 hour periods) and I only count what I can see,,, see > > is still not herself,, not a word out of her, she only had htree > > words,,, but htey are gone,,, she is vocal at times, making loud > > noices,,, but not a word. > > > > Her balance is still so off, still has such a hard time holding her > > head up, sitting is still a struggle, and forget walking, > > > > Her wheelchair was delevered this week and it truly was a sad day > > for me. > > > > over the last few weeks,, we took her down 1ml of the trilrptol, > > this seemed to lift the fog a bit and give her more awake time... > > before the decrease she was sleeping so so much, now we have days > > where she does great and days where she still sleeps.... > > > > Quote Link to comment Share on other sites More sharing options...
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