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Grandpa's Beautiful Granddaughter needs help

Wed, 07/31/2013 - 12:23

My granddaughter has had seizures since she was six (6) years old.  She just turned 16 and is heartbroken that she can't even think about getting her license or driving because she still has seizures at a rate of about one (1) per month.  As she gets older her normal beautiful personality is being transformed into a beautiful girl who is beginning to think she is less than everyone else because she has gran mal seizures. 

Her doctor is not talking about exploring surgery and is just treating her with medication at this point.  He has increased her medication over the last year but her seizures are still not controlled. 

I'm thinking about taking her to the Mayo clinic or to an expert for her to be checked to see if she is a candidate for surgery or just how to explore this option.  She has had many tests to isolate the brain section that is the source of the problem but he is still not recommending surgery however he is not a surgeon.

If you have gone through the process to explore the surgery option, please send me any information you have so I can start the process for her. 

Thank you,

A Concerned Grandpa 

Comments

Re: Grandpa's Beautiful Granddaughter needs help

Submitted by just_joe on Wed, 2013-07-31 - 15:47

hope you get some answers  to your questions. As for her neiro he mad have looked  at things and considered th options available.

 To give you some insight. I had been completely seizure free for over 3 years and I was  sutdying for my drivers test when I hada a seizure.Yup I have noot been seiure free since then. My neuro has had studies done for paitents tha he thinks  will benefit from surgery. I was one of those patients. The damage to my brain is in more than 1 lobe s I can not become seizure free. You might to talk to her neuro or have her parents talk and seewhat her opitons are. Laso get the My Epilepsy Diary near the top of this page and use it. The more information the neuro gets the more opeions there can be. Young people today have it a lot easier thn I did. When diagnosed I was 13 studies and the tests back then hav been replaced with MRI's and CT scans. Medications have been getting a lot better at reducing the length of time in the seizure along with hte time it takes to focus (time it taks to get back to normal). She alsoneeds to look at the bright side. Understand that there are many people like me that have more than 1 type of seizures and many that will become seizure free as well as those that will have several seizures a day for the rest of their lives. She needs to look at history and do some real checking families were still putting epileptics in homes aay from the public even into the 1960's.... Do have her set up the diary and not any things that might target her seizures note the times she takes her meds her mood and if she has any side effects. The diary can be sentto her doctors or downloaded and printed out and taken to her nexy visit. I am using it now because my seizure count had increased and I had a new medicine added. So I noted the change and any side effects when I had a seizure and what could have triggered th seizures. Anything can trigger seizures depending on type of seizure and the person. I know I had been working an a cafiteria in the kitchen for 2 years before having the seizure. I was told by my neuro I could not go ack to work for 6 months. Followed by You can not work in kitchens because gettin g to hot too fast can precipatate a seizure. I loved that job and cooking but I had to leave it. Stress can also give some people problems.

Good luck and do understand that many of us want to be seizure free and do not like hearing about young kids having seizures we have been there done that. Many of us work behind the sceens thring to help in our own way. I  have been in drug studies for new medicatons for several years. They are making strieds with those and they are getting better than they were when I was  teen. I would not like the kids today taking the meds I was taking. Back then they worked on the whole central nervious system. Now they can target certain areas or types of seizures. So that is where I help others will be in here trying to answer questions. Let her know she isn't the only person and that her 1 seizure is better than my 2-3 a week right now. Mine very in type and length. I have been blessed because I have't had a convulsive seizure since 1974. But I still hav seizures. I have never driven and am old enough to be her grand father.

Check with her neuro of have her parents check and see what options she has.

Also let that beautiful girl know that there is more to life than driving. She could become a wonderful young lady who owns a business. Or a wonderful teacher who tells students that people with un seen handicaps need to be listened too. Becasue all epilepsy is is just that it is a handicap that can't be seen. People with hearing aids have a handicap. People with glasses have a handicap. People in wheelchairs have a handicap. Most of those handicaps are always seen. Your grand daughters only shows up once a monththen goes away for a month. She is a lucky young lady with a special grand father who wants her to get seizure free.

I hope you get the answers you are seeking and that she gets seizure free.

Do get her to use the diary and note everything it can create graphs that will show the neuro more about ther seizures or medications. When growing medications dosages need to be adjusted and this might be a time for that.

Good luck

hope you get some answers  to your questions. As for her neiro he mad have looked  at things and considered th options available.

 To give you some insight. I had been completely seizure free for over 3 years and I was  sutdying for my drivers test when I hada a seizure.Yup I have noot been seiure free since then. My neuro has had studies done for paitents tha he thinks  will benefit from surgery. I was one of those patients. The damage to my brain is in more than 1 lobe s I can not become seizure free. You might to talk to her neuro or have her parents talk and seewhat her opitons are. Laso get the My Epilepsy Diary near the top of this page and use it. The more information the neuro gets the more opeions there can be. Young people today have it a lot easier thn I did. When diagnosed I was 13 studies and the tests back then hav been replaced with MRI's and CT scans. Medications have been getting a lot better at reducing the length of time in the seizure along with hte time it takes to focus (time it taks to get back to normal). She alsoneeds to look at the bright side. Understand that there are many people like me that have more than 1 type of seizures and many that will become seizure free as well as those that will have several seizures a day for the rest of their lives. She needs to look at history and do some real checking families were still putting epileptics in homes aay from the public even into the 1960's.... Do have her set up the diary and not any things that might target her seizures note the times she takes her meds her mood and if she has any side effects. The diary can be sentto her doctors or downloaded and printed out and taken to her nexy visit. I am using it now because my seizure count had increased and I had a new medicine added. So I noted the change and any side effects when I had a seizure and what could have triggered th seizures. Anything can trigger seizures depending on type of seizure and the person. I know I had been working an a cafiteria in the kitchen for 2 years before having the seizure. I was told by my neuro I could not go ack to work for 6 months. Followed by You can not work in kitchens because gettin g to hot too fast can precipatate a seizure. I loved that job and cooking but I had to leave it. Stress can also give some people problems.

Good luck and do understand that many of us want to be seizure free and do not like hearing about young kids having seizures we have been there done that. Many of us work behind the sceens thring to help in our own way. I  have been in drug studies for new medicatons for several years. They are making strieds with those and they are getting better than they were when I was  teen. I would not like the kids today taking the meds I was taking. Back then they worked on the whole central nervious system. Now they can target certain areas or types of seizures. So that is where I help others will be in here trying to answer questions. Let her know she isn't the only person and that her 1 seizure is better than my 2-3 a week right now. Mine very in type and length. I have been blessed because I have't had a convulsive seizure since 1974. But I still hav seizures. I have never driven and am old enough to be her grand father.

Check with her neuro of have her parents check and see what options she has.

Also let that beautiful girl know that there is more to life than driving. She could become a wonderful young lady who owns a business. Or a wonderful teacher who tells students that people with un seen handicaps need to be listened too. Becasue all epilepsy is is just that it is a handicap that can't be seen. People with hearing aids have a handicap. People with glasses have a handicap. People in wheelchairs have a handicap. Most of those handicaps are always seen. Your grand daughters only shows up once a monththen goes away for a month. She is a lucky young lady with a special grand father who wants her to get seizure free.

I hope you get the answers you are seeking and that she gets seizure free.

Do get her to use the diary and note everything it can create graphs that will show the neuro more about ther seizures or medications. When growing medications dosages need to be adjusted and this might be a time for that.

Good luck

Re: Grandpa's Beautiful Granddaughter needs help

Submitted by EdiGuruPaPa on Wed, 2013-08-07 - 14:49
Thank you just_joe for taking the time to reply and I'll have her read your responses.

Re: Grandpa's Beautiful Granddaughter needs help

Submitted by just_joe on Wed, 2013-08-07 - 18:26

Good      I know it isn't easy when your a teen and want to be like everybody else. I had pretty bad focal motor seizures when I was her age. Those would start with my  right hand rising up. Onace shoulder level I went down into a convulsive seizure which looked like a grand mal. I say looked like because in those I was fully aware of what was going on. I could see, hear and understand what people wer saying and doing. Some were good friends who said they didn't wnat to be around me anymore. I knew they really didn't know what had happened or were afraid of what might happen. I had done a study on Epiepsy and written an s=essay on just that because I really didn't know what Epilepsy was. The essay I worte I ended up reading to that english teachers classes and the science teachers classes. I got called into the vice princables office where I was informaed the essay was very informative and they wanted the whole school to hear it. I gave it to the student body in an assembly. The essay have different type of seizures. what they loked like. Some of the medications which can be used, It also had information on what to do if they see someone having a seizure. I went by the school 5 years later to see mr Rammy and I saw that essay framed on his wall. I was then informed that it is read to the entire student body 2-3 times a year which has helped some epileptics learn more and their friends have assisted some people in seizures. That meeting was 6 years after I had written the essay. Your grand daughter is probably able to be a better job especially now.I did mine in 1964 long before we landed on the moon or before computers and the web.

I hope this helps. She too can help people understand that she may have an issue that most people will not see but she is no different than people who use a wheel chair. use a hearing aid or even wear glasses. The only time her problem can and is seen is during a seizure. Technology has gone a long way and today there are sites like this pone where people can and do get information and in some ways assistance in understanding their problem. Many problems can and have been over come.

As for tests tere ar many and those which showthe most inforamation are generally done in a monitering unit. If it wnet like mine did she will be given and MRI which does not cause any pain. It will however show anythng that is wrong in the brain. Mine showed the scared brian tissue, where it was, and with that the neuro could tell about when in my life it happened. She will then be put on an EEG that stays working for a few days. She will also be watched periodically while in the room she will be in. She will get good food and be able to watch movies and talk with friends that show up. In the room I was in I had a recliner I could set in along with a bed that I could raise and lower different parts but then is is just a bed used in most hospitals. She will also have nurses checking on her. The constant EEG will show any seizure activity or abnormality and seeing those the neuro can see where in the brain te activity is. Mine was for 2 things. 1 to see if I was able to have surgery. Back then we were not sure exactly where the scar tissue was. If the damage or tissuewas in one lobe tere was a possiability for surgery. Mine is in more than one lobe so surgery is a no go. 2. It was also to see where the damage was compared to where we were told it was back in 1963. There was very little difference. Also by knowing this information they might had a medicine that works in that specific area of the brain. Which will keep some effects down along with side effects.

Later  Grandpa

give your grand daughter a hug 

Good      I know it isn't easy when your a teen and want to be like everybody else. I had pretty bad focal motor seizures when I was her age. Those would start with my  right hand rising up. Onace shoulder level I went down into a convulsive seizure which looked like a grand mal. I say looked like because in those I was fully aware of what was going on. I could see, hear and understand what people wer saying and doing. Some were good friends who said they didn't wnat to be around me anymore. I knew they really didn't know what had happened or were afraid of what might happen. I had done a study on Epiepsy and written an s=essay on just that because I really didn't know what Epilepsy was. The essay I worte I ended up reading to that english teachers classes and the science teachers classes. I got called into the vice princables office where I was informaed the essay was very informative and they wanted the whole school to hear it. I gave it to the student body in an assembly. The essay have different type of seizures. what they loked like. Some of the medications which can be used, It also had information on what to do if they see someone having a seizure. I went by the school 5 years later to see mr Rammy and I saw that essay framed on his wall. I was then informed that it is read to the entire student body 2-3 times a year which has helped some epileptics learn more and their friends have assisted some people in seizures. That meeting was 6 years after I had written the essay. Your grand daughter is probably able to be a better job especially now.I did mine in 1964 long before we landed on the moon or before computers and the web.

I hope this helps. She too can help people understand that she may have an issue that most people will not see but she is no different than people who use a wheel chair. use a hearing aid or even wear glasses. The only time her problem can and is seen is during a seizure. Technology has gone a long way and today there are sites like this pone where people can and do get information and in some ways assistance in understanding their problem. Many problems can and have been over come.

As for tests tere ar many and those which showthe most inforamation are generally done in a monitering unit. If it wnet like mine did she will be given and MRI which does not cause any pain. It will however show anythng that is wrong in the brain. Mine showed the scared brian tissue, where it was, and with that the neuro could tell about when in my life it happened. She will then be put on an EEG that stays working for a few days. She will also be watched periodically while in the room she will be in. She will get good food and be able to watch movies and talk with friends that show up. In the room I was in I had a recliner I could set in along with a bed that I could raise and lower different parts but then is is just a bed used in most hospitals. She will also have nurses checking on her. The constant EEG will show any seizure activity or abnormality and seeing those the neuro can see where in the brain te activity is. Mine was for 2 things. 1 to see if I was able to have surgery. Back then we were not sure exactly where the scar tissue was. If the damage or tissuewas in one lobe tere was a possiability for surgery. Mine is in more than one lobe so surgery is a no go. 2. It was also to see where the damage was compared to where we were told it was back in 1963. There was very little difference. Also by knowing this information they might had a medicine that works in that specific area of the brain. Which will keep some effects down along with side effects.

Later  Grandpa

give your grand daughter a hug 

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