Thank you for your story regarding epilepsy. My son had his first seizure in February of this year. He was hospitalized and a tests were ran. The doctors could not find anything that would have caused a seizure. He was told that if he had a second one, he would have to be medicated. He had his second one 3.5 months later and continued to have two more over the following two weeks.
My son was prescribed Concerta (stimulant) in December for ADHD. When the doctor increased the mg. to 36, three days later he had his 1st seizure. So my first thought was that the Concerta caused the seizure but the neurologist said "absolutely not". The psychiatrist that prescribed the meds would not say one way or another. After the second seziure, the psychiatrist recommended that he go off the Concerta, the neurologist continued to state that the two were not related. After the 4th seizure, we took him off the stimulant and he hasn't had a seizure since BUT he also went on his maximum dose of seizure meds that same day. So we still are not sure if the stimulant was lowering his threshold resulting in seizures.
This was an amazing story. It hit home. I have a 16 year old daughter, she has had epilepsy since the age of 5 and has had 3 brain surgeries, a VNS put in & removed, and more medicines you can imagine. Her last surgery was a sucess in the seizures she was having since she satrted but now they have moved or are starting from a different spot. This is a terrible disease and is taking a toll on her mentally. She has been on hospital homebound for about 4-5 years now and the only positive that has come out of this is she is VERY involved with the local elementary volunteering with children with Autism. She won Student Volunteer of the year 2 years ago for the school the district & the state. We will NEVER give up or stop fighting!!! Spread the word !!!!!
Thank you so much for having this show. We need to keep bringing awareness to epilepsy. My son first had a seizure at age 16. He was put on different medications and was seizure free for almost 12 months at a time. He was able to live his dream and go to college and even though he had epilepsy he was able to graduate high school with a 4.0 GPA and attend the college of his choice. My son was a very compliant patient did everything right and just wanted to beat this illness. He lost his battle with epilepsy at age 19 when he was here one minute and gone the next. He died of sudden death in epilepsy. My life will never be the same. I hope we can all raise money to beat this for good so no other family has to have this happen to them. Thank you 60 minutes and Katie for having this show and for this wonderful family that is raising money for the CURE.
From a man who has had grand mal seizure`s that meds did not help for over 15 years. Treated at VA hospitals and Bethsda Navel Hospital by the best nero surgeons in the world.
The cure for me was in the bible. It was a in a verse where the disciples talking to Jesus saying that the could not cure a person with epilepsy.(they called it Demons)"whatever" it had the same description of me having a seizure. And Jesus himself said this can only be cured by prayer. I could go on and on,,,,,,but please find your own verse ask GOD to help
Wow...I too was diagnosed with epilepsy.I had tried various meds and none helped. My cure was also found in the bible. My church and my Pastor fasted and prayed for me and I have not had any seizures for over 20 years. I had grand-mal and petit mal seizures. I hated the way the seizures ruled my life. I never knew when or where it would happen. I lived in fear for a long time. Now I have no fear and I can go anywhere and no worry about having seizures. Prayer really works.
For "wyorose" ---
Try living as a low-income disabled person --- (obviously your invisible disability being epilepsy)--- in the tough neighborhoods.
That consist of neighborhoods racially different than what you are.
As you get profiled by those, when you are seen walking on the sidewalk. Are you praying everytime within your mindset -- that those stare in your face and asks you for drugs.
How red do your eyes remain??
Or do you just stay stiff and keep praying???
Religion does exist. It does helps those more, than it "helps" others.
But there are those whom are negged away from that topic.
*Religion & $$$$$$$$ do not mix, with successful results.
(ex: Jim & Tammy Baker, scamming out their followers)
That is also defined as Religion as a Business.
*Religion & Politics do not successfully mix.
(the Middle-East has proven this for too long. As can be verified in "The Bible" and other sources.)
As with modern politics, there are too many examples.
My comment is sort of off the thread, but I decided to share my thoughts in case they may be of help to someone.
I imagine that with all the treatments it is likely that their daughter has been put on lamotrigine at some point as its' primary use is for seizures. I am bipolar and also use this med and find it very helpful. When I was younger I experienced severe migraines around times I had my "period". I also experienced migraines as an adult past menapause. The migraines are moderate. I know when it is coming because of the visual indications. I immediately would take two excedrine, put a cool wet washcloth across my eyes and lie down. Within 30 minutes it passed and I was ok. At times when I was out and about and couldn't immediately follow this proceedure the visual problems, pain and nausea worsened quickly. I remember trying to write a check at the grocery store and needed help because the visual effects impaired my ability to see.
I remember when my mom died and I was under stress I started to get migraines again. I realized I had forgotten to take the medicine with all of the confusion. When I started taking the med the migraines dissaapeared. I liken the migraine to an electrical storm in the brain an the medicine seems to reduce the "sparks".
I wanted to share this firstly to suggest that if the med hadn't been used for Loren it might be helpful. But, again, I suspect this is one of the treatments used at some point for her and was unsuccesful.
I know that lamotrigine (lamictal) was used for treatment of seizures initially and was later found helpful with bipolar illness with success. I am curious about whether it has ever been used for migraines. If not, I would hope that it would be tested for migraines. I know it took care of my migraines.
By maolsonma
My 21 yr son started having seizures at 6month. We were told he would not live beyond 18 months and he is 21! Jon has been on 28 different medicines and combination of meds. He has had the brain split - the front 2/3 -he has an VNS implanted. So with the VNS Jon is on Depakote Sprinkle- lamictal, zonisamide, keppra, vimpat plus others to help the appetite- protect the stomach and to help liver functions. At one point Jon was having 200- yes 200 seizures a day. Before the CC he had GTC (daily)- COmplex partical- petie mal- drop seizures and many others- 12 types in all. Since the brain surgery the GTC's have pretty muched stopped- as have the full body drops- but he still have partical and complex partical seizures. He is severly mentally handicapped - has no communication skills- he functions at about 1 1/2 to 2 yr old. Jon still lives at home. His 18 yr old sister also has seizures, and delays- but not near as bad as Jon's. The public really needs to know more as does the over all medically profession.
Your last sentence:
The society of this country functions via FADS.
Once "EPILEPSY" be accepted as the FAD, better attention be given.
sic: who endorsed CBS~~
Very good report and true that much more research needs to be done. One thing no one has mentioned is the Ketogenic Diet. It is also a viable treatment for epilepsy that involves no medication and no surgery. My son started having seizures at 9 months old and was having hundreds every single day. He did not respond to any of the meds we tried and brain surgery was discussed. Thankfully we found a wonderful doctor at Walter Reed (who they did apparently did not interview even though they showed the hospital) who started him on the diet. His seizures were gone completely within 3 months and we were able to take him off all medications. He was on the diet for 4 years. By the end of that time his EEG was normal again. He is now 11 years old, seizure-free, taking a very low dose of Keppra to make sure no seizure reappear and a perfectly normal boy. It does not work for everyone, and it is a lot of work, but it is certainly worth a try and is very rarely mentioned on any reports about epilepsy.
When our daughter was about 3 years old she started behaving strangely. Trips to the doctor always resulted that we were overreacting and there was nothing to worry about. As her behaviors got more strange, rapid eye-blinking, hesitant breaks in her conversation and sometimes a ?dead staring look in her eyes, I became more aggressive with the doctors. After demanding an EKG it was discovered that she was having 100 petite seizures per hour. My daughter is now 31 and she has been diagnosed as border-lined mentally retarded since she was 7 years old. I often wonder had the seizures been discovered sooner could we have prevented her predicament. Of course the Doctors swear one has nothing to do with the other but I find their explanations disingenuous at best and a straight lie to avoid liability at worse. All the meds they gave her had horrible side effects. One, Ritalin, resulted in her being rushed to the ER with her eyes rolling in the back of her head. Doctors are practicing and they don?t know. While they certainly know more than the average person they refuse to admit they really have no idea what they are talking about.
Now having 3 children diagnosed with epilepsy, it's both frustrating and heartbreaking to watch my girls struggle with this diagnosis. Since only 2 are biologically related, the odds of having 3 children with epilepsy are astronomical. My oldest, who is 21, began at 5 years old, and it was then that her birthfather realized that his seizures were probably hereditary. Brain surgery, Vagus Nerve Stimulator implantation and numerous cocktails of medications have not helped her significantly. She has now begun having some eneuresis (wetting) episodes when she has some of her seizures. Her cognitive development has been impacted, as well as her language abilities. At 5, she was much more communicative and capable.
Now, her twin sisters, our only biological children, have been diagnosed in their teens, after years of ADHD treatments. It is believed that they have both disorders, but didn't begin medications until a few years ago. They have since graduated from high school with special education assistance, but are struggling with treatment options. As trained special educators, their Dad and I have fought for appropriate educational settings, modifications, and socially appropriate options for all three girls. It has been a fight and we are emotionally drained.
Each new drug or treatment has dangled hope in front of us, but we are in the statistical minority of those for whom nothing has helped. Watching the decline in cognition and knowing "what could have been" is the hardest part. Have we pursued all our options? Do we put them through more? When do you stop and just accept that things will not improve? I wish we knew.
Have you tried the Ketogenic Diet? I have heard there is a study going right now on what is called the modified Atkins diet to control seizure in children and adults. The new devices that are being implanted in the brain are for different types of seizures do they where they implant it if I am right. I have heard from my former VNS study doctor that the implants in the brain have helped patients that the VNS did not help. The VNS is for partial seizures. I hope this helps you.
It would have been interesting if the report had mentioned tha medication the axelrod's daugther is taking. The report says that this last medication they tried is controlling her seizures. If we knew the name of the drug we could discuss it with our doctors. Great report, please follow it up until there is a cure.
Thanks a lot on behalf of everyone with epilepsy and their relatives.
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My son was prescribed Concerta (stimulant) in December for ADHD. When the doctor increased the mg. to 36, three days later he had his 1st seizure. So my first thought was that the Concerta caused the seizure but the neurologist said "absolutely not". The psychiatrist that prescribed the meds would not say one way or another. After the second seziure, the psychiatrist recommended that he go off the Concerta, the neurologist continued to state that the two were not related. After the 4th seizure, we took him off the stimulant and he hasn't had a seizure since BUT he also went on his maximum dose of seizure meds that same day. So we still are not sure if the stimulant was lowering his threshold resulting in seizures.
Has anyone experienced anything similar?
Thank you 60 minutes and Katie for having this show and for this wonderful family that is raising money for the CURE.
The cure for me was in the bible. It was a in a verse where the disciples talking to Jesus saying that the could not cure a person with epilepsy.(they called it Demons)"whatever" it had the same description of me having a seizure. And Jesus himself said this can only be cured by prayer.
I could go on and on,,,,,,but please find your own verse ask GOD to help
Not a cure to many.
Too many dont have the(ir) time to separate.
Try living as a low-income disabled person --- (obviously your invisible disability being epilepsy)--- in the tough neighborhoods.
That consist of neighborhoods racially different than what you are.
As you get profiled by those, when you are seen walking on the sidewalk. Are you praying everytime within your mindset -- that those stare in your face and asks you for drugs.
How red do your eyes remain??
Or do you just stay stiff and keep praying???
But there are those whom are negged away from that topic.
*Religion & $$$$$$$$ do not mix, with successful results.
(ex: Jim & Tammy Baker, scamming out their followers)
That is also defined as Religion as a Business.
*Religion & Politics do not successfully mix.
(the Middle-East has proven this for too long. As can be verified in "The Bible" and other sources.)
As with modern politics, there are too many examples.
I imagine that with all the treatments it is likely that their daughter has been put on lamotrigine at some point as its' primary use is for seizures. I am bipolar and also use this med and find it very helpful. When I was younger I experienced severe migraines around times I had my "period". I also experienced migraines as an adult past menapause. The migraines are moderate. I know when it is coming because of the visual indications. I immediately would take two excedrine, put a cool wet washcloth across my eyes and lie down. Within 30 minutes it passed and I was ok. At times when I was out and about and couldn't immediately follow this proceedure the visual problems, pain and nausea worsened quickly. I remember trying to write a check at the grocery store and needed help because the visual effects impaired my ability to see.
I remember when my mom died and I was under stress I started to get migraines again. I realized I had forgotten to take the medicine with all of the confusion. When I started taking the med the migraines dissaapeared. I liken the migraine to an electrical storm in the brain an the medicine seems to reduce the "sparks".
I wanted to share this firstly to suggest that if the med hadn't been used for Loren it might be helpful. But, again, I suspect this is one of the treatments used at some point for her and was unsuccesful.
I know that lamotrigine (lamictal) was used for treatment of seizures initially and was later found helpful with bipolar illness with success. I am curious about whether it has ever been used for migraines. If not, I would hope that it would be tested for migraines. I know it took care of my migraines.
My 21 yr son started having seizures at 6month. We were told he would not live beyond 18 months and he is 21! Jon has been on 28 different medicines and combination of meds. He has had the brain split - the front 2/3 -he has an VNS implanted. So with the VNS Jon is on Depakote Sprinkle- lamictal, zonisamide, keppra, vimpat plus others to help the appetite- protect the stomach and to help liver functions. At one point Jon was having 200- yes 200 seizures a day. Before the CC he had GTC (daily)- COmplex partical- petie mal- drop seizures and many others- 12 types in all. Since the brain surgery the GTC's have pretty muched stopped- as have the full body drops- but he still have partical and complex partical seizures. He is severly mentally handicapped - has no communication skills- he functions at about 1 1/2 to 2 yr old. Jon still lives at home. His 18 yr old sister also has seizures, and delays- but not near as bad as Jon's. The public really needs to know more as does the over all medically profession.
The society of this country functions via FADS.
Once "EPILEPSY" be accepted as the FAD, better attention be given.
sic: who endorsed CBS~~
Now, her twin sisters, our only biological children, have been diagnosed in their teens, after years of ADHD treatments. It is believed that they have both disorders, but didn't begin medications until a few years ago. They have since graduated from high school with special education assistance, but are struggling with treatment options. As trained special educators, their Dad and I have fought for appropriate educational settings, modifications, and socially appropriate options for all three girls. It has been a fight and we are emotionally drained.
Each new drug or treatment has dangled hope in front of us, but we are in the statistical minority of those for whom nothing has helped. Watching the decline in cognition and knowing "what could have been" is the hardest part. Have we pursued all our options? Do we put them through more? When do you stop and just accept that things will not improve? I wish we knew.
Sincerely,
Jennifer Strigle
Thanks a lot on behalf of everyone with epilepsy and their relatives.