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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 nicki on Thu, 2013-08-08 - 20:13
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

Submitted by spar10 on Wed, 2013-07-31 - 22:23

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. 

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

Submitted by EdiGuruPaPa on Wed, 2013-08-07 - 14:51
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

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