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Medical Forum / Diseases and Disorders / Epilepsy / June 2005More questions
Hi group, You have no idea how much it has helped me to have this ng to read and give me information as well as support. Cody continues to have partial complex seizures a couple of times a week. His post-ictal state is identical whether he has had partial or grand mal seizure. I feel like the neurologist office is getting weary of me calling all the time. What threshold would most of you consider "reportable"? Is it likely that he will continue to have the partial seizures despite therapeutic level of Trileptal? Should I consider asking for a different or additional med if the Trileptal is not completely controlling these after 2 years? I feel like as long as he isn't having 15 minute grand mals then I can handle the "little" ones. But I don't want to be not acting on something that I should. Also, have y'all heard about ketogenic diets, and what is your opinion? My SIL sent me a bunch of information about it, but the neuro is not all that impressed with using it. I am concerned about the possibility of weight loss if I use the diet, and he certainly doesn't have any to spare. Thank you all again. I am so grateful to have found this ng. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > Hi group, > You have no idea how much it has helped me to have this ng to read and [quoted text clipped - 5 lines] > office > is getting weary of me calling all the time. *** I had to go back in my 'history folders' to look up his age (13 ?). Some people only read the group 2-3x a week, so you may get more answers now, if there are others around who've used the Keto diet below (other than comments I'll add), and if they have kids who are 'aging' and using anti ep. medications. (If there are long gaps between posts, if you slip his age in with your note, it might get some more parents, or people who've grown up with seizures to comment.) / > What threshold would most of you consider "reportable"? Is it likely that > he will continue to have the partial seizures despite therapeutic level of [quoted text clipped - 4 lines] > "little" ones. But I don't want to be not acting on something that I > should. *** You're probably correct. If you see the Dr. you could ask them how long the Aura or Simple partial stage can go without having to go to a hospital. Both Julie Walton and Howdy Dave have information at sites (listed at end of their posts) under First aid for Seizures parts, and other sections. Several of the main szrs can be handled using the information on the Idaho (Julie's) site. There are guidelines there about how long a szr. can run before you need consider calling for help. One of the comments on one of those sites is someone can often come out of the szr. Better, if there's someone there that they know when they 'come back', and having a whole Crowd of Strangers standing over us can actually make the recovery slower than if it's just quiet and relaxing as we're back. (If you *can't find those sites mentioned, drop me a note (reply to this), and I'll find a General post I used to do each 2-3 weeks that lists about 4-5 main sites including the Ep. Foundation of America (I use for pills glossary), Julie's Idaho site, her First aid for Seizures page, First aid in Water now, Howdy Dave Naess' site (he posts around here). I had it set up as a Short Note (about 30 lines) with link addresses and a 3 line summary of what each link is. I can find it in my archives and just send you the post as Forward Inline unless you see any in the Archives links (I think I did one about 10? days ago or less for someone new). G./ > Also, have y'all heard about ketogenic diets, and what is your opinion? > My > SIL sent me a bunch of information about it, but the neuro is not all that > impressed with using it. I am concerned about the possibility of weight > loss > if I use the diet, and he certainly doesn't have any to spare. ******** Now that we know he's *13 perhaps anyone here who's used the Ketogenic Diet can comment if he's getting too olde yet or not. *Some adults can use it. It works *best on younger people since it's a High Fat Diet that produces a form of 'Ketosis' (shock) that scrambles the signals of *Some types of seizures, so stops them. Because older kids tend to be Heavier, they'd need to Higher level of Fats compared to their Total body weight to reach the same level of Ketosis than e.g. a 4 or 6 year old. Then as someone gets beyond a certain age, there might be a question about effect of Fat levels on Heart and Circulation systems etc. Depending what's In the Diet, he might not be thrilled with the Mix of Foods versus 'Normal Teen Fare'.... *I don't have specific samples of what is in it, although the Ep. Foundation may have a Link into a typical diet at its site http://efa.org . OR you might be above to do a Google Search just on Ketogenic Diet or Ketogenic&samples ?? to see if there are some sample diets online. Above was based on a talk I saw at the Toronto Ep. Association convention about 6-7 years ago. We did have 1-2 people who had kids on it, but that was several years ago. Perhaps there are some lurkers around, who have kids using it, who can give you comments of *whether it helped them, and approx. Age and type of seizures they were using it for. Do you have a **Local Chapter of an Epilepsy Association near to you (i.e. are you in a Large city?). You don't have to be a Member usually, or annual dues are often under $30 per year to get a newsletter and info. on any conventions they hold. The one here waives Dues if people ask them to, since people like me give them extra to cover costs of stuff like that... Also the Toronto Chapter has a "Child Specialist" who organizes various 1 day 'kids only' conventions by Age group and Male or Female, that discuss 'what it's like', how they deal with various social and coping things, related to the extent of their seizures, peer groups etc. During her first 2 years (1998-2000) those were highly received by people who had participated in them. I just wondered if you might have something like that close to you too. /G. > Thank you all again. I am so grateful to have found this ng. > Holly [quoted text clipped - 3 lines] > Robin Technologies > www.careplans.com Thanks, G, for the information. Sometimes, I get so caught up in my stuff, I figure the entire world must be just sitting out there waiting to hear more news so they can advise me. Guess not. ;-) I really feel okay with handling the seizures as they occur. I am a nurse and the mommy part of me is still able to listen to the nurse part when it's needed. My concern is more related to how many seizures he is having. The partial-complex, while not as scary, are still seizures, and indicate to me that his control is not ideal. I am going to look into the Epilepsy Foundation and what is offered. Part of my difficulty is that for the past few months I have been more stressed and busy than I ever have. I work almost an hour away, and am usually there for 8-9 hours. 3 days a week, I drive 45 minutes to a meeting which lasts 1-2 hours, then 30 minutes home. Last month I had emergency surgery, my husband had hip surgery last week. The only time I have for myself is after 9 or 10 pm when kids are in bed. So usenet and the web are the main places for me to get information. I am also changing my job to a place that is much closer to home, with less responsibility, so that I can have more time at home. Anyway... Thanks for the info and encouragement. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > > Hi group, > > You have no idea how much it has helped me to have this ng to read and [quoted text clipped - 91 lines] > > Robin Technologies > > www.careplans.com > I am also changing my job to a place that is much closer to home, with > less > responsibility, so that I can have more time at home. Very wise. Mary Hi Holly, I've heard of the ketogenic diet but have no knowledge of it's effectiveness sorry. However, as far as the neurologist's scepticism goes, in my experience they are always very sceptical of any treatment that they don't get paid for. Odd that. So don't be too concerned about the fact that he (she?) is not impressed with it. Remember that doctors are in business to make money from sick people, just like anyone else is in business to make money and will put down anything that threatens to take business away from them. Find out what you can and if it looks like it might benefit Cody, then go for it. If Cody isn't fully controlled by the drugs he's on, then by all means ask for something to be added or to replace the trileptal. There's a whole range of drugs available and we all react differently to them, so it may just be a matter of experimenting until the right one is found. There's a good chance that complete control can be achieved, though there are a small percentage of people who, like myself, never achieve full control of their seizures. That's called intractable epilepsy, but as I said, only a small percentage of people are like that. You're obviously a good mother and I admire your courage in dealing with a child facing this condition. It can't be easy for you. All the best, Darryl. > Hi group, > You have no idea how much it has helped me to have this ng to read and [quoted text clipped - 32 lines] > > www.careplans.com Thank you so much for the kind words and encouragement, Darryl. I am going to make an appt with the neurologist and discuss these issues. I have known this doctor for most of my career (17 years) and really don't think it's about the money for him. I could be wrong, but he is just not like that. I hate the idea of switching around medications, because he reacted so badly to the depakote (and it took so long to determine that it was the source of those symptoms) I am afraid of side effects and complications. But, if there is something out there that is just what he needs, I want him to be taking it. Thank you again. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > Hi Holly, > [quoted text clipped - 60 lines] > > > > www.careplans.com > Hi group, > You have no idea how much it has helped me to have this ng to read and give [quoted text clipped - 10 lines] > "little" ones. But I don't want to be not acting on something that I > should. "Where some people might think that reducing 10 seizures a month to one per month is good control, I believe good seizure control is no seizures." That is a quote from a physician at the medical center I go to, and if you want to read the article that quote was in, here is the link: <http://www.marshfieldclinic.org/education/pages/default.aspx?page=wellness_askDr _epilepsy> Barb > Also, have y'all heard about ketogenic diets, and what is your opinion? My > SIL sent me a bunch of information about it, but the neuro is not all that [quoted text clipped - 11 lines] > > www.careplans.com Thank you so much, Barb. That's exactly my feeling, but I wondered if I was being unrealistic or ungrateful. Yes, I am thankful he's not having gm seizures every day, but I am upset that he is having them at all. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > > Hi group, > > You have no idea how much it has helped me to have this ng to read and give [quoted text clipped - 16 lines] > to, and if you want to read the article that quote was in, here is the > link: <http://www.marshfieldclinic.org/education/pages/default.aspx?page=wellness_ askDr_epilepsy> > Barb > > [quoted text clipped - 13 lines] > > > > www.careplans.com I've had epilepsy for 33yrs and it has never been fully controlled but I have had a-c drugs where the side-effects are worse than the fits. It's really a case of finding a level you can live with that interferes as little as possible with the your ability to live the rest of your life as you want to. As I've never had a driving licence I don't miss having a car. My husband doesn't drive because he's one of the rare people who's decided that he wasn't very good at concentrating enough when he did. This means that we use our feet, buses (and my local council gives me a travel pass which allows me to go on any length bus ride from our home county for nothing for short ones and 50p for longer ones) trains (for no more than £2 for journeys in Scotland) and not buying,insuring,taxing or running a car means that taxis are not a luxury. Nor do we add to much of CO2 in the atmosphere so it makes us feel righteous too ! Chris L. > Hi group, > You have no idea how much it has helped me to have this ng to read and give > me information as well as support. Cody continues to have partial complex > seizures a couple of times a week. His post-ictal state is identical whether > he has had partial or grand mal seizure. I feel like the neurologist office > is getting weary of me calling all the time. > What threshold would most of you consider "reportable"? Is it likely that > he will continue to have the partial seizures despite therapeutic level of [quoted text clipped - 3 lines] > "little" ones. But I don't want to be not acting on something that I > should. > Also, have y'all heard about ketogenic diets, and what is your opinion? My > SIL sent me a bunch of information about it, but the neuro is not all that > impressed with using it. I am concerned about the possibility of weight loss > if I use the diet, and he certainly doesn't have any to spare. > Thank you all again. I am so grateful to have found this ng. > Holly > -- > Holly F. Sox, RN, RAC-C > Clinical Services Manager > Robin Technologies > www.careplans.com > I've had epilepsy for 33yrs and it has never been fully controlled but I > have had a-c drugs where the side-effects are worse than the fits. It's > really a case of finding a level you can live with that interferes as > little as possible with the your ability to live the rest of your life as > you want to. Yes - that applies to very many conditions though, not just epilepsy. > As I've never had a driving licence I don't miss having a car. My husband > doesn't drive because he's one of the rare people who's decided that he [quoted text clipped - 5 lines] > means that taxis are not a luxury. Nor do we add to much of CO2 in the > atmosphere so it makes us feel righteous too ! Well done! The cost of buying, maintaining, insuring, taxing and driving a car does make it seem hardly worthwhile when it's all added up. We have a car because, at the moment, we need it to carry our goods to events. We've considered not having our own and hiring for the few times a year we really do NEED to travel on four wheels, the problem here is that hire cars don't have towing facilities, in our experience. There are many things we have which, very recently and for various reasons, we've decided that we can do without. Several other items, which most people consider necessary, we've never had. It is possible to lead a very rich and full life despite being 'deprived' of things and having epilepsy, cancer, arthritis, low income and all sorts of other 'disabilities' :-) Mary who wouldn't like to be without her computer ... :-) > Chris L. > [quoted text clipped - 37 lines] > >> www.careplans.com Chris and Mary, I think the way you have adjusted to your condition and made your lives exactly what you want them to be is wonderful. The driving thing is one of the biggest issues for me as Cody gets closer to driving (and leaving home) age. We live in a rural area, and the closest grocery store is 8 miles away. For any sort of variety, you have to drive 15 miles to the closest large town. There is no bus service. I can't imagine what a taxi would cost. I know that at some point, if he is not able to drive, then he will need to move to a larger city in order to have transportation. Which brings a whole new set of fears to this mom's heart. Oh well... I will cross that bridge when we get there. Thanks again. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > > I've had epilepsy for 33yrs and it has never been fully controlled but I > > have had a-c drugs where the side-effects are worse than the fits. It's [quoted text clipped - 75 lines] > > > >> www.careplans.com > Chris and Mary, > [quoted text clipped - 4 lines] > home) > age. Well, I DO drive now, I was only grounded for about eighteen months and it was AWFUL. But I was twelve years younger, I think that I've learned some wisdom. > We live in a rural area, and the closest grocery store is 8 miles away. > For [quoted text clipped - 5 lines] > of > fears to this mom's heart. Yes, things are different in different places. I'd love to live in the country, as far as possible from anyone else and any other buildings. But it's not sensible, since my husband's heart attack, my brain surgery and, later, cancer surgery and treatment I realise how fortunate I am to live in a place of clinical excellence. The traffic, the noise,the neighbours, the smell, the limited garden and other shortcomings are the price I pay for it. Notice I don't say anything about shops, I hate shopping and we only go every four or five weeks. > Oh well... I will cross that bridge when we get there. It might not be so bad, you know, you might even find some aspects to enjoy. And we'll all still be here. I hope:-) All life's a compromise, Mary There is no bus service, yet ! Unless you feel that collecting information which is vaguely related to hod epilepsy and want to keep his mind off it, why not suggest that he makes a note of any car trips that would not have been necessary if there'd been a bus service ? He could collect similar information from other people because if more people get on buses then there'll be fewer polluting cars. He and friends could regard it as a green campaign for the benefit of all (ie not just because he has epilepsy) Chris L. > Chris and Mary, > I think the way you have adjusted to your condition and made your lives > exactly what you want them to be is wonderful. The driving thing is one of > the biggest issues for me as Cody gets closer to driving (and leaving home) > age. > We live in a rural area, and the closest grocery store is 8 miles away. For > any sort of variety, you have to drive 15 miles to the closest large town. > There is no bus service. I can't imagine what a taxi would cost. I know that > at some point, if he is not able to drive, then he will need to move to a > larger city in order to have transportation. Which brings a whole new set of > fears to this mom's heart. > Oh well... I will cross that bridge when we get there. > Thanks again. > Holly > -- > Holly F. Sox, RN, RAC-C > Clinical Services Manager > Robin Technologies > www.careplans.com > > [quoted text clipped - 85 lines] > > > > > >> www.careplans.com Regarding bus service.. I think the informal research is something that Cody would think is really cool and he'd enjoy doing that. However, we are in a rural area. My in-laws live about an eighth of a mile up the driveway. Besides them, the closest house to us is about half a mile away. I can definitely see him moving to Columbia or another decent sized city/town in order to have transportation, should that become an issue. I don't mean to sound ignorant, but have never been in the situation of needing to use public transportation. (Other than school buses) Would it be feasible for an area such as this to run buses? Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > There is no bus service, yet ! > [quoted text clipped - 124 lines] > > > > > > > >> www.careplans.com > Regarding bus service.. > I think the informal research is something that Cody would think is really [quoted text clipped - 56 lines] >> >> > www.careplans.com etc. I cut the bottom part since it was above 8k and I wanted to paste some olde stuff from this thread before it expires. The Ketogenic Diet (you mention below) is only useful for Children in most cases, as the level of Fats they need in their diet to bring on 'ketosis' (shock) that seems to suppress *some types of seizures (not sure if Grand Mal is one of them), becomes too high to maintain as they get heavier. And higher fat levels can produce heart and other negative effects at adult age as well. A doctor or Ep. Association consultant could give you more information on it. (Or you could try search the US Ep Foundation of America site http://efa.org under Howdy Dave has some links to UK sites that might list it.) My question about him travelling to college/school started here --> As near as I could tell Cody is 18? so if he's going to be going to school (college) he'll be leaving home in next year? So the debate about whether he can drive from there to ?? to there etc. becomes moot? If the onset had happened when my kids were younger I would have been looking at moving closer to **services for them, and commuting (if necessary) to a Farm, rather than looking to services that weren't **there but not altering my lifestyle, to take into account the new reality of my kid's conditions. But that's just me.. If he's going to be going on to a college and staying in Dorms, he's not going to need to 'get back' except on College Breaks and Holiday periods? I got that from piece of this (expiring) note below, if that approx. age level was correct? If he's Younger, correct that here please, so others might be able to comment to you too. G. --> Parts of your and other's older longer (8K) posts, I cut--> Chris and Mary, I think the way you have adjusted to your condition and made your lives exactly what you want them to be is wonderful. The driving thing is one of the biggest issues for me as Cody gets closer to driving (and leaving home) age. We live in a rural area, and the closest grocery store is 8 miles away. For any sort of variety, you have to drive 15 miles to the closest large town. There is no bus service. I can't imagine what a taxi would cost. I know that *********************************************** at some point, if he is not able to drive, then he will need to move to a larger city in order to have transportation. Which brings a whole new set of fears to this mom's heart. Oh well... I will cross that bridge when we get there. Thanks again. Holly -- Holly F. Sox, RN, RAC-C Clinical Services Manager Robin Technologies www.careplans.com > "Chris Lesurf" <chrisl@argonet.co.uk> wrote in message > news:4d7cd44e57chrisl@argonet.co.uk... [quoted text clipped - 48 lines] > >> complex > >> seizures a couple of times a week. His post-ictal state is identical ********************************** > >> whether he has had partial or grand mal seizure. I feel like the > >> neurologist office [quoted text clipped - 14 lines] > >> Also, have y'all heard about ketogenic diets, and what is your opinion? > >> My **************************************** (see above) ********** > >> SIL sent me a bunch of information about it, but the neuro is not all > >> that [quoted text clipped - 8 lines] > >> Robin Technologies >> www.careplans.com > The Ketogenic Diet (you mention below) is only useful for Children in > most cases, as the level of Fats they need in their diet to bring on [quoted text clipped - 5 lines] > Foundation of America site http://efa.org ***under Howdy Dave has some > links to UK sites that might list it.) *** Correction Freudian typo --> above Should have said "unless Howdy Dave has some links to UK sites that might list it. ) etc. (The efa Ep. Foundation of America address should be ok. ) This is the part I *forgot to paste? on my other reply, at least I *think I forgot it. G./ --> older paste -> Chris and Mary, I think the way you have adjusted to your condition and made your lives exactly what you want them to be is wonderful. The driving thing is one of the biggest issues for me as Cody gets closer to driving (and leaving home) ******************************************************* age. We live in a rural area, and the closest grocery store is 8 miles away. For any sort of variety, you have to drive 15 miles to the closest large town. ************************************************************* There is no bus service. I can't imagine what a taxi would cost. I know that ***************************** If he's away at Dorms, this isn't an issue ? **** at some point, if he is not able to drive, then he will need to move to a larger city in order to have transportation. Which brings a whole new set of ********************************* Of course, and he will eventually too anyway, so where better than at Trade School, College or University if that's where he goes next ? // fears to this mom's heart. Oh well... I will cross that bridge when we get there. Thanks again. Holly |
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