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Grandpa's Beautiful Granddaughter needs help
Wed, 07/31/2013 - 12:23My 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
Re: Grandpa's Beautiful Granddaughter needs help
Submitted by just_joe on Mon, 2013-09-02 - 15:52
Grandpa
I still have seizures mine are slight in many ways but they could go into generalized, tonis clonic or focal motor seizures which could look like grand mal seizures. I haven't had a convulsion since 1973. Many of the seizures I have now most people would not know or even think I am in one. I could be considered controlled even tho I still have seizures. I have a seizure every 10-14 days. Those seizures last seconds and the recovery time is not long at all. The total tim from start to getting back to normal would be 20 seconds to about 2 minutes. That time is depending of the type of seizure I had. Partial seizures would be seconds, the complex partial seizures would be longer.
I understand that you want the besy for your grand daughter as my parents wanted for me. I also know that surgery will be looked at in several ways. Where is the seizure activity is it in an area that can be removed without effecting other things. WIll removing this get the patient seizure free or get their seizures down to an acceptable level. Is the area in one lobe oor is there seizure activity in more than 1 lobe. My neurologist has worked with surgeons and got surgery done but he did have to get the TEAM to approve the process for his patient.
Your grand daughter can and will do many things even if she still has seizures. I know that because there have been many people with epilepsy who have done great things.
Not driving should be the least of her worrys. There are many ways to get to and from dances games cafes and other places. Dates should be no problem either. She should let people she is around know about her seizures and what they should do if they see her in a seizure they know what needs to be done. If she has problems with some kids her age they were really not good friends. She can still have fun with her friends go over to their house or invite them over.
If her parents want to know more about options aailable have them talk to her neurologist. If the question is is surgery that to can be discussed with her neurologist. But understand that surgery may not be an option and medications may ge her seizures under control and she may be seizure free with the right AEDs. I was seizure free for 3 years and the seizures I have now many people don't know about even when I have them while we are talking. I also know that there are new medications coming out that have less drowseyness and are easier on the body than the ones I used to take. I know that because I have been in several drug studies concering new medicatins and the type of seizuresI have.
She should be open minded and be thinking of her future in a field she would like. If she can think of that rather than why she can't drive she will go far. If she is more worried about driving than doing what she needs to do to get ahead she may have a problem. It is up to her up bringing and her.
50 years ago three weren't many busses. Kids in high school walked or rode the bus unless they had a used car. There wasn't the technology we have today. We had TV but back then only 3 channels and that was from 7am until 10pm. There were no computers in homes until the 1990's. Does she even know what a party line phone is? Cell phones were non existant. There were 2 kinds of sneekers and 4 kinds(2 colors black or white, low top or high top)You might tell her that she is one very lucky young lady. I say that because in my day they were still putting people with epilepsy in homes away from the other people because they didn't want they seen. I had a wonder family. Caring and they pushed me to be the best at everything I could do. I taught myself not to use epilepsy as a crutch. I moved up in every company I worked for. I had moved up from sales to office manager to a small company then a friend and I bought a branch of that company. Part owner of a business ain't bad for someone with epilepsy who still had seizures. Even office and warehouse manager aint bad. It will all depend on her and her upbringing.
I hope this helps
Joe
Grandpa
I still have seizures mine are slight in many ways but they could go into generalized, tonis clonic or focal motor seizures which could look like grand mal seizures. I haven't had a convulsion since 1973. Many of the seizures I have now most people would not know or even think I am in one. I could be considered controlled even tho I still have seizures. I have a seizure every 10-14 days. Those seizures last seconds and the recovery time is not long at all. The total tim from start to getting back to normal would be 20 seconds to about 2 minutes. That time is depending of the type of seizure I had. Partial seizures would be seconds, the complex partial seizures would be longer.
I understand that you want the besy for your grand daughter as my parents wanted for me. I also know that surgery will be looked at in several ways. Where is the seizure activity is it in an area that can be removed without effecting other things. WIll removing this get the patient seizure free or get their seizures down to an acceptable level. Is the area in one lobe oor is there seizure activity in more than 1 lobe. My neurologist has worked with surgeons and got surgery done but he did have to get the TEAM to approve the process for his patient.
Your grand daughter can and will do many things even if she still has seizures. I know that because there have been many people with epilepsy who have done great things.
Not driving should be the least of her worrys. There are many ways to get to and from dances games cafes and other places. Dates should be no problem either. She should let people she is around know about her seizures and what they should do if they see her in a seizure they know what needs to be done. If she has problems with some kids her age they were really not good friends. She can still have fun with her friends go over to their house or invite them over.
If her parents want to know more about options aailable have them talk to her neurologist. If the question is is surgery that to can be discussed with her neurologist. But understand that surgery may not be an option and medications may ge her seizures under control and she may be seizure free with the right AEDs. I was seizure free for 3 years and the seizures I have now many people don't know about even when I have them while we are talking. I also know that there are new medications coming out that have less drowseyness and are easier on the body than the ones I used to take. I know that because I have been in several drug studies concering new medicatins and the type of seizuresI have.
She should be open minded and be thinking of her future in a field she would like. If she can think of that rather than why she can't drive she will go far. If she is more worried about driving than doing what she needs to do to get ahead she may have a problem. It is up to her up bringing and her.
50 years ago three weren't many busses. Kids in high school walked or rode the bus unless they had a used car. There wasn't the technology we have today. We had TV but back then only 3 channels and that was from 7am until 10pm. There were no computers in homes until the 1990's. Does she even know what a party line phone is? Cell phones were non existant. There were 2 kinds of sneekers and 4 kinds(2 colors black or white, low top or high top)You might tell her that she is one very lucky young lady. I say that because in my day they were still putting people with epilepsy in homes away from the other people because they didn't want they seen. I had a wonder family. Caring and they pushed me to be the best at everything I could do. I taught myself not to use epilepsy as a crutch. I moved up in every company I worked for. I had moved up from sales to office manager to a small company then a friend and I bought a branch of that company. Part owner of a business ain't bad for someone with epilepsy who still had seizures. Even office and warehouse manager aint bad. It will all depend on her and her upbringing.
I hope this helps
Joe