Hello everyone. We just found out last week that my 5 yr old son has absence seizures. He had been having the staring spells for a few months and I thought it as ADD/ADHD or something like that. When he had his phsyical to start kindergarten this fall, I told his pedi and he said he thought it was petit mal. I was floored. My son is very healthy and has never really been sick and the guilt that rushed over me was overwhelming that I did not get him checked out sooner. We had our EEG 2 weeks ago and I saw with my own eyes the siezures spiking on the computer screen. Of course I asked the tech if he saw them and he said "by law I cannot tell you". It didn't matter though, I knew what I saw. So last week we went to the childrens hospital and say the neurologist who said he was classic absence seizures. Not sure what classic is or if that is a good thing but she started him on zarontin liquid and we are on our 4th day. So far no side effects other than he is sleeping through the night and not waking 3-4 times as he usually did. I am starting to research his diet which so far has been the typical American youngsters diet, too much of all the "bad" stuff. So, I am here to get as much info as I can and this site seemed to be the best one that I have found. Please ask anything you want, I have always been an open book.
Hello...son was just diagnosed last week.
- Thread starter Krystal
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Kayleesmom
New
- Messages
- 24
- Reaction score
- 0
- Points
- 0
Just wanted to welcome you to the site and let you know that there are many wonderful and knowledgable parents here to help. Don't feel bad about not knowing what was going on. I've met adults who had petit mal seizures all there life and didn't know it. It is very common to think it is something else. I'll be praying for you guys.
Leslie G.
Leslie G.
skillefer
New
- Messages
- 2,339
- Reaction score
- 0
- Points
- 0
Hi Krystal! Welcome to CWE. 
Feel free to ask questions, chime in, or just vent when needed. We have a lot of parents here, as well as caregivers, spouses, and patients. I'm glad to hear that your checking into your sons diet. Lots of people don't realize how important diet is. Also, I'm glad to hear that your son is having minimal side effects. As for the petit mals (absence seizures), don't feel bad. I'm a special ed teacher, and I'll tell you right now that there are many children who go all through their school life having them, and nobody including their teachers ever notice. Since I have epilepsy, I tend to keep an eye out for things that others might overlook. Since you and the doc found it now, your son has a fantastic chance of the seizures not having much of an effect on his schooling. By finding it now, and treating it, your son won't have to go through the confusing of coming out of one and realizing that he's missing bits of information...or having the teacher scold him, or you scold him, for not paying attention. Epilepsy is not the end of your dreams for your son. Many of us here have advanced degrees, loving families, and careers we enjoy. So don't let the diagnosis get you down. Try to think of it as being like diabetes or asthma....a medical condition that is treatable. check out the library here. It has some fantastic info. And remember, you aren't alone. (Just remember, that if you do dietary changes, it will be easiest if the entire family makes the changes together....and if you choose to do dietary changes, try to make sure that his teacher knows about the diet so that they can send a letter out to the parents asking them not to send super sugary treats for birthdays or holidays. Nothing is worse for a child then watching everyone else eat frosted cupcakes while they munch on an apple.
Feel free to ask questions, chime in, or just vent when needed. We have a lot of parents here, as well as caregivers, spouses, and patients. I'm glad to hear that your checking into your sons diet. Lots of people don't realize how important diet is. Also, I'm glad to hear that your son is having minimal side effects. As for the petit mals (absence seizures), don't feel bad. I'm a special ed teacher, and I'll tell you right now that there are many children who go all through their school life having them, and nobody including their teachers ever notice. Since I have epilepsy, I tend to keep an eye out for things that others might overlook. Since you and the doc found it now, your son has a fantastic chance of the seizures not having much of an effect on his schooling. By finding it now, and treating it, your son won't have to go through the confusing of coming out of one and realizing that he's missing bits of information...or having the teacher scold him, or you scold him, for not paying attention. Epilepsy is not the end of your dreams for your son. Many of us here have advanced degrees, loving families, and careers we enjoy. So don't let the diagnosis get you down. Try to think of it as being like diabetes or asthma....a medical condition that is treatable. check out the library here. It has some fantastic info. And remember, you aren't alone. (Just remember, that if you do dietary changes, it will be easiest if the entire family makes the changes together....and if you choose to do dietary changes, try to make sure that his teacher knows about the diet so that they can send a letter out to the parents asking them not to send super sugary treats for birthdays or holidays. Nothing is worse for a child then watching everyone else eat frosted cupcakes while they munch on an apple. Thanks for the welcome. We are trying to keep a positive outlook on this. We always try not to worry about something unless there is something to worry about as far as we know this is serious but the neurologist said she thinks after 2 years drug therapy that he has a 95% chance of not having any more seizures. Does that sound right? I always thought it was not something that just went away. I read a lot about red dye 40.....so shocked of all the foods that list this. Is this something others here try to avoid? Are there topics here that are controversial that get things heated? I would hate to bring something up that has been debated forever and seems to be something no one wants to bring up again. I have been on other boards where the mention of something as simple as "walmart" starts an explosive reaction for those that love it and those that hate it.:roflmao:
skillefer
New
- Messages
- 2,339
- Reaction score
- 0
- Points
- 0
LOL...you're pretty much free to ask anything.... Just remember we do have kids on the site too, and make sure the language is clean. That, and no talk of suicide. We talk about Walmart here too.... some of us have reactions to the lights they use, some don't... I can't think of any debate that we all hate...because we're always getting new people and new points of view.
As for your child outgrowing the E. It all depends on what kind of seizures he's having...And 95% sounds a bit high. Just being honest. My doc said the same thing about me...and Im still having them, and I'm over 30. It's something we work our way around. As for diet. Some people here use diet to control the seizures, some use it to compliment the meds, and some don't use it at all. There's lots of good info in the library here regarding seizures and diet, as well as other alternative therapies. Since I have a history of diabetes in my family, and I've been found to be hypoglycemic, I tend to tell people to eat 6 small meals a day. And I suggest that the meals be healthy. By small, it should fit on a salad/dessert plate. By healthy, I mean no fast food, sodas, artificial sweeteners, and make sure you have a protein to go with the carb. Fluctuating blood sugar levels can trigger seizures. Robin's the one to talk to here for nutrition info. IF your looking into high protein diets, definitely talk to Dutch Mom. There are others here too, but those are the two that spring to the top of my mind. Hope this helps.
Just remember we do have kids on the site too, and make sure the language is clean. That, and no talk of suicide. We talk about Walmart here too.... some of us have reactions to the lights they use, some don't... I can't think of any debate that we all hate...because we're always getting new people and new points of view. As for your child outgrowing the E. It all depends on what kind of seizures he's having...And 95% sounds a bit high. Just being honest. My doc said the same thing about me...and Im still having them, and I'm over 30.
It's something we work our way around. As for diet. Some people here use diet to control the seizures, some use it to compliment the meds, and some don't use it at all. There's lots of good info in the library here regarding seizures and diet, as well as other alternative therapies. Since I have a history of diabetes in my family, and I've been found to be hypoglycemic, I tend to tell people to eat 6 small meals a day. And I suggest that the meals be healthy. By small, it should fit on a salad/dessert plate. By healthy, I mean no fast food, sodas, artificial sweeteners, and make sure you have a protein to go with the carb. Fluctuating blood sugar levels can trigger seizures. Robin's the one to talk to here for nutrition info. IF your looking into high protein diets, definitely talk to Dutch Mom. There are others here too, but those are the two that spring to the top of my mind. Hope this helps.
danjor
Playing With Angels
- Messages
- 89
- Reaction score
- 0
- Points
- 0
Hi! Im Jordan. Im 15 (16 in 3 days ) I have had epilepsy for about 4 months. I would just like to say welcome! Everyone here is AMAZING and its a great community to be apart. Im sure the parents will be in soon to introduce themselves 
) I have had epilepsy for about 4 months. I would just like to say welcome! Everyone here is AMAZING and its a great community to be apart. Im sure the parents will be in soon to introduce themselves Hi Krystal! Welcome : -) Our stories sound very similar: My daughter (4 yrs.old) was recently diagnosed with absence seizures (January-on her birthday). The neurologist didn't seem to want to discuss any other form of treatment besides medicine, so he started her on ethosuximide (generic to Zarontin). The only side-effect she had was tiredness...and boy was she tired! It was awful to watch. Our little ball of energy was changing right before our eyes and there wasn't anything we could do. We felt so helpless and SAD! Unfortunately, the ethosuximide didn't help much so we increased her dose and hoped for the best. All the other meds have pretty serious side effects and we aren't too anxious to try any of them. Her neurologist also told us that Gracie had a pretty great chance of growing out of this, but his percentage wasn't quite as high as what you were told; 50-75% chance.
So here we are, a month or so ago, Gracie had been taking medicine now for four months and was consistenly having approx. 3/4 seizures a day. When all of a sudden, she had a surge of seizures. She was now having 14/16 a day. The neurologist's only solutions were to either max out her dose of ethosuximide or to switch to Lamictal. We decided to try the new dose of ethosuximide, even though the current dose made her so tired. The new dose didn't seem to worsen the sleepiness and it did seem to help to control the seizures to where she was having 5/6 a day. Better, but not good enough for us. I found this book called Treating Epilepsy Naturally,and it has changed Gracie's life! In it I came across information on the ill-effects of aspartame (artifical sweetener in most things that are fat-free or sugar-free). Since Gracie was eating about three-four yogurt cups/day, all containing aspartame, we switched her yogurt to an organic brand and low and behold...THE SEIZURES STOPPED!!!!!! And, to top that off, she was now sleeping throught the night, which she hasn't done since she was 18 mos.! Her energy level has come back; She has color back in her face; Most of the behavior issues she had developed from being so tired have subsided; She looks and acts like our Gracie again! It's been four weeks since we saw a seizure with only two nights of wakings. Get this...when we told her neurologist about our discovery, his response, "Oh, I've never heard of the connection between aspartame and seizures." Can you believe that? We are in the process of finding a new neurologist!!!!
Everyone here understands what you are going through and is so generous about offering their stories and their support. I hope you find comfort, as I have, in talking to people here. Check out that book...it's amazing!!!!!
So here we are, a month or so ago, Gracie had been taking medicine now for four months and was consistenly having approx. 3/4 seizures a day. When all of a sudden, she had a surge of seizures. She was now having 14/16 a day. The neurologist's only solutions were to either max out her dose of ethosuximide or to switch to Lamictal. We decided to try the new dose of ethosuximide, even though the current dose made her so tired. The new dose didn't seem to worsen the sleepiness and it did seem to help to control the seizures to where she was having 5/6 a day. Better, but not good enough for us. I found this book called Treating Epilepsy Naturally,and it has changed Gracie's life! In it I came across information on the ill-effects of aspartame (artifical sweetener in most things that are fat-free or sugar-free). Since Gracie was eating about three-four yogurt cups/day, all containing aspartame, we switched her yogurt to an organic brand and low and behold...THE SEIZURES STOPPED!!!!!! And, to top that off, she was now sleeping throught the night, which she hasn't done since she was 18 mos.! Her energy level has come back; She has color back in her face; Most of the behavior issues she had developed from being so tired have subsided; She looks and acts like our Gracie again! It's been four weeks since we saw a seizure with only two nights of wakings. Get this...when we told her neurologist about our discovery, his response, "Oh, I've never heard of the connection between aspartame and seizures." Can you believe that? We are in the process of finding a new neurologist!!!!
Everyone here understands what you are going through and is so generous about offering their stories and their support. I hope you find comfort, as I have, in talking to people here. Check out that book...it's amazing!!!!!
RobinN
Super Mom
- Messages
- 7,835
- Reaction score
- 7
- Points
- 163
Yes Yes Yes!
Not only aspartame but other man made ingredients added to our food. MSG has about 30 different names for it.
Krystal - do all you can naturally. I can't stress enough that you have options. Meds will only put a bandaid on the situation. Do consider takeing the time to figure out the cause.
That is a great book klkerber.
Not only aspartame but other man made ingredients added to our food. MSG has about 30 different names for it.
Krystal - do all you can naturally. I can't stress enough that you have options. Meds will only put a bandaid on the situation. Do consider takeing the time to figure out the cause.
That is a great book klkerber.