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Grandpa's Beautiful Granddaughter needs help

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

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

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

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 

Re: Grandpa's Beautiful Granddaughter needs help

All I can say from your post grandpa. Your granddaughter is lucky to have such a supportive family member in you.You sincerely want the best for her. No matter if surgery is an option or not she going to do great with family members like you around. Just let her be her. Not being a able to drive is not a life ending sentence, it just majorily frustrating if you live ruralry. Hopefully she doesnt want to become a trucker.

Re: Grandpa's Beautiful Granddaughter needs help

Your granddaughter's story sounds very much like my daughter's story.  My daughter had her first seizure at 11; she had some type of seizure every 8 days, I think she's had every kind of seizure on the spectrum.  After trying two different types of meds with no success, at age 16 she was admitted to an epilepsy monitoring unit,  where she was monitored continuously for several days to see if she would be a candidate for surgery or if an appropriate anti-seizure med could be found.  She was not a candidate for surgery, as they could not determine where in the brain her seizures start.  They did put her on the med that has worked best for her, and her seizures are down to once per month, and they are really minor ones that she can deal with herself.  Her last major seizure was in April 2010.

Here's what her life is like with one minor seizure per month:  she is attending a university three hours from her home and lives on campus.  She is on the dean's list, and has a part-time job at school that happens to be tied in with her major, so that is a bonus.  She is registered as a student with a disability, so she can sign up for classes before other students.  That way, she can pick classes that are not in the early morning, which is when she is most likely to have a seizure.  We helped her pick the university by 1) the major she wanted, and 2) access to public transportation, so she can get around. We visited offices for students with disabilities as part of our college visits. 

None of our other kids had cars when they were in college (one just graduated this spring, and she is still using her bicycle until she buys her own car).   My daughter was a suburban kid, so we encouraged her to pick a major that will lead to a career in an urban area, where public transportation is available, or where she could walk to work.  Her siblings have gravitated to cities themselves, as did most of their friends, so she will have plenty of friends doing the same thing.

We took our daughter to the Secretary of State's office on her 16th birthday and got her a state ID card that looks just like a driver license.  She had to prove to herself that she could get along without a car, and she has done so.  She also proved that she could hold a job and bring home a paycheck, and that has done wonders for her confidence.

If you want to know what to expect from an epilepsy monitoring unit, we are pros.  We expected to be in the unit (parent has to go too) for 4-7 days at most, we went way past that, as the doctors were not getting what they needed for an evaluation.  It is a very intense experience, and you have to be prepared for the financial burden.  Surgery is not always the answer in spite of all the work and expense, but we are ok with a happy, independent kid with a 99% normal life.  Sorry for long post, but that's the way things go sometimes when you have lots of experience and experiences to relate. 

Re: Grandpa's Beautiful Granddaughter needs help

Thank you spar10 for taking the time to tell your story and your comments.  Your response was not too long and the information regarding testing was very helpful....bless you and your family

Re: Grandpa's Beautiful Granddaughter needs help

I saw this again and wanted to see if you had received any other posts. This person left one that does say alot and it also tell you that thre are things that can be done to assist her which others might not have.

I had some problems back in the early years I did learn not to use it as a crutch. I also told others that I could do anythng they could and other things better. I loved shop and wanted to go into wood shop but I couldn't becasue if I had a seizure and was around a saw it might not have been good to watch. I did however go into drafting which I loved. I also worked on our cars at home. Before I was out of high school I ws able to take a motor apart and put it together on paper and manually. Please let your grand daughter know that there will be times when she can't do some thngs but there will be things she can do that others can't. I worked my fanny off and worked my way up in every job I had. A friend of mine and I started a small business and were doing great until a recession shut down businesses i the area we were in. We closed the doors and paid off the bank and moved to Dallas where I went to work in a call center. I was working on an AT&T project. I started in sales, went into customer service then to the save team. The project manager was dropping esecutive appeals on my desk wanting them resolved. I learned how to program the numbers and do all the data entry to make the numbers work. I talked to the Executive Appeals Office in NY and Atlanta. So if a person with epilepsy can do those things your grand daughter can excell because the techonolgy today she can do almost anything.

I hope this helps

Understand that there are many people like me that work in the background doing some things others don't think about. Like new drug studies. I have been in many over the past 8-10 years and some of those drugs anre being used today with success.

Re: Grandpa's Beautiful Granddaughter needs help

Hi. I am brand new to this site and forum and this is my first post. If you are not getting the answers you need for your granddaughter or her parents are not, please firmly press for more information. My seventeen year old son just had brain surgery to hopefully cure his epilepsy on July 31st and two weeks after surgery, had his first NORMAL EEG!!! Surgery was never suggested as an option for him because it is usually reserved for patients with intractable seizures (those that don't respond to medication) and his were relatively well-controlled. But "well-controlled" became unacceptable to me as he approached high school graduation and would soon be going off on his own (he had grand mal seizures only at night during sleep and I was very concerned about SUDEP) so I began to research epilepsy surgery and found out that the success rates for the right patients is very high (anywhere from sixty to ninety-plus percent!) I wanted this so badly for him so then I began to research what makes a patient a good candidate for this surgery and found two things that must be true: one, the seizure focus (the place in the brain where the seizures originate) must be clearly identifiable and two, the area in question must be removable without causing harm to "eloquent" areas of the brain (that is, those areas that we just have to have or areas that would cause worse harm to the patient than having seizures). I approached our neurologist about surgery and he believed that my concerns for my son were legitimate and that we should find out if Justin was a good candidate for surgery. It turns out he was but our neurologist faced a lot of opposition from many other people on the epilepsy team (all of them have to agree that a child should have surgery or the surgery does not happen) because Justin didn't have frequent seizures. Some of the doctors on the team were adamant that the "first, do no harm" rule of medicine be adhered to in our case and said we were basically foolish for considering the risk of surgery when Justin's seizures were relatively well-controlled. One doctor told me "Tough luck. You and your child are not the only people who have had to deal with this type of thing and life sucks sometimes so too bad" in so many words. But our neurologist took an extra week to do his own research on the type of surgery my son would need before presenting Justin's case to the entire team. He wanted to have all of his ducks in a row, so to speak, so that he could make the other team members see that not only was Justin a good surgical candidate but that he deserved a chance at a normal life, one free of seizures and the high doses of medications he was on and their associated side-effects. Justin was considering careers in both the military and law enforcement and we knew that the military career was completely out of the question (one must be seizure free for five years and off all medications to be eligible to join the military) and we could envision Justin sailing through the interview process for law enforcement jobs in a few years when he finishes college and then after getting conditional job offers, ultimately being turned down for one job after another once the physical and health history were done (what were the chances that a law enforcement agency could risk having an epileptic in their force even if his seizures were only during sleep? We didn't think any agency could risk that.) Our neurologist really went to bat for us and won over every member of the epilepsy team! He is forever one of my heroes because he was willing to think outside the box for us and was willing to stand against great opposition to make surgery happen for my son. So Justin had surgery on July 31st and returned to school to begin his senior year of high school twenty days later. Eight days after surgery, you could not even tell he had had surgery at all and his recovery from surgery has been astonishing! The surgery took about four hours and his incision went from about ear-level on the right side of his head to halfway to ear-level on the left side (and all the way across the top of his head). He has titanium plates and screws holding his skull together while it heals but all of that is permanent. Our neurosurgeon, also one of my heroes, does not shave a child's hair before surgery (shaving actually causes nicks in the skin that leave a child more open to bacterial infections) so Justin's incision is completely invisible (and was almost invisible from the start even though he had dozens of dissolvable stitches all across the top of his head just behind his forehead hairline). Justin had a completely normal EEG two weeks after surgery...no epileptic activity whatsoever...and we are just beside ourselves with joy for the incredible outcome! But I must tell you that I pushed for what I believed in for my child and when I met resistance, I kept going. I did my research so I was educated and knew what I was talking about and made our neurologist see that even though Justin's seizures were relatively well-controlled, having epilepsy still affected his life and possibly his future in many negative ways. You need to find out for sure if the seizure focus has been identified in your daughter and if so, if it can be removed without doing more harm to her. If it is removable, you may have to fight for what your feel is right for her. I am going on a mission to have the protocol for epilepsy surgery changed because I believe many people are missing out on a normal life and good seizure control should not be the only thing considered when deciding if the surgery is possible for a patient. Other factors such as quality of life, medication side-effects, brain damage from just having seizures over time, the cumulative risk of simply having epilepsy (50,000 people a year die of epilepsy related complications like accidents and SUDEP!). When the cumulative risks of living with epilepsy were laid side by side with the small risks associated with surgery for Justin, it was a no-brainer that he should absolutely have the surgery. Every case is different so there is no one standard or answer that applies to everyone but if a patient wants to be seizure-free, is a good candidate for the surgery, and is willing to risk surgery, I believe they should have that choice. Press on 4 a cure for your granddaughter and find out if she is a good surgery candidate. If your are not satisfied with the answers you are getting from her present neurologist, do some research and find a different doctor. I have read that the Cleveland Clinic is the top hospital in the country for pediatric epilepsy surgery so you may want to take her there. Before you do that though, have her records sent to the epilepsy team there to evaluate her case and see if she might be a good candidate for surgery. It isn't always necessary to go there though. Our neurologist and neurosurgeon are just an hour away from our home and they are top-notch! They are both heroes to me! Please contact me personally at wolfcopwife14@gmail.com if you would like more information about our hospital and our doctors. My best to you!

Re: Grandpa's Beautiful Granddaughter needs help

Hello Grandpa

I'm hoping I can give suggestions but not feel impersonable or noncompassionate. (Not sure if those are real words).

An uncontrollable seizure condition would often be several seizures in a day or very severe seizures...long and very exhausting. Having one seizure a month may be a reason for a doctor to hold off on surgery. Maybe let us know what happens during the generalized seizure and for how long.

Taking several medications at high doses would be another factor to consider. How many different medications, at what dose, and with what side effects?

What is the chance that her situation will improve, stay the same, or worsen after surgery? As the brain continues to develop, would she need further surgery?

Regarding the Mayo Clinic, you should probably inquire on this site, or anywhere else, about the possible benefits. It is not inexpensive, and often not covered by insurance. Sometimes a patient can spend a week going through many tests, and still be told that it will be best to remain on certain medications.  

Good luck and keep us informed. 

Re: Grandpa's Beautiful Granddaughter needs help

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

Re: Grandpa's Beautiful Granddaughter needs help

Hi there,

What a moving post and the answers that you have gotten have been so thoughtful. As others have mentioned, not everyone is a candidate for surgery. It depends of the type of epilepsy and whether or not it is localized in an area of the brain. Try John Hopkins medical center in Baltimore, they have been named the best neurology department I. The USA an they are brain surgeons with the latest technology. My son (15 years old) has only had one seizure and his neuro from the university of Maryland said that he could have surgery (I don't think so!). I don't think brain surgery is for everyone as some people have irreversible speech and cognitive impairment afterward.

Now, as far as the future goes, my husbands cousin suffers from epilepsy, she is a gorgeous, vibrant, smart 23 year old now. She went to college and graduated and currently has a job in NYC. She has never had a license, but in NYC no one drives a car anyway. She has been in remission for over 3 years when they found the correct dosage/med combo. I know all of this because when my son had a seizure I wanted to know about more about life as a young person with epilepsy. I knew she did ll the college things to including partying and having an occasional cocktail,

Anyway, I know epilepsy is scary, and it stinks, but there are other things in life that are far worse. I know my husbands cousin in question had it pretty bad and now they pretty much forgot all about it and last thing I heard she was studying for her license.

There is hope and there are new things out there to help. Neurology is a developing science. I wish you best of luck!

Re: Grandpa's Beautiful Granddaughter needs help

I had surgery with Dr. Doyle at NYU Langone Med Center in 2005.  I am still seizure free.  Had szs for 36 years prior.  There are many tests to see if you qualify for surgery first, so if she's interested, see if she is a candidate, only if she qualifies do you have to make a decision whether or not to do it. Ask the surgeons how many surgeries they have done for people with epilepsy before making a choice. 

Re: Grandpa's Beautiful Granddaughter needs help

Hello Concerned Grandpa.

If you want, I can give you my email address and I would be willing to help the poor girl. I've been there, in that situation. I'm a 19 year old guy and I'm living with Juvenile Myoclonic Epilepsy.

JME is a very "light" version of epilepsy. I've found a miracle drug, Keppra XR, that has completely done away with my symptoms. No jerks, no seizures.

 When I was 16, I had one of my first grand mal's. I KNOW how it feels. I have BEEN there. I have cried for nights, I have decided death was easier than living with this crap, and my entire personality changed. What she needs to know, is she is NOT a changed person at all. If anything, JME has made me a more ambitious person. 

Time heals everything. I would allow her to try any kind of experimental treatment out there. Epilepsy seems very subjective to every single person, and there's no telling what may stop her symptoms.

My doctor actually allowed me to drive because I was able to control my epilepsy so well. ANYTHING is possible. I hate to hear someone suffer. Epilepsy is a tough thing... But this community has been giving me hope since 2008, and I have every intention to give back.

I highly recommend the procedure. And if you want, you can give me her email address and I can help give her hope (hopefully). I talked to an older girl with JME when I was her age, and it really made everything different, to know that I'm not alone.

Good luck sir.

-Austin