Seizure research heats up

Seizure research heats up

There are 27 comments on the Scienceblog.com story from Mar 10, 2006, titled Seizure research heats up. In it, Scienceblog.com reports that:

It's one of those unavoidable facts of life - ' kids get sick and have fevers. Usually, those elevated internal temperatures cause only temporary discomfort, but in some small children they spark convulsions ...

Join the discussion below, or Read more at Scienceblog.com.

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norvell

Pigeon Forge, TN

#1 Mar 10, 2006
I agree with the above,but I haave one question. I know a friend who is about 50,an epileptic and when his temp. hits anywhere with the 99 degre range
he will a seizure,and no one is able to explain this.Any ideas?
Mickey

AOL

#2 Mar 23, 2006
How long have you had seizures? I have had them 20 yrs.
norvell

Jackson, TN

#3 Apr 21, 2006
I have had seizures ever since I was inthe 7th grade. They have changed from the alsgrand msl to the temporal lob. These fire up in the temp
christian

Philippines

#4 Apr 24, 2006
my son had seizures since 2004 he's 2 months old, he's taking phenobarbs for two years with no episodes until last week. now he's taking depakote in addition to his pb's. anyway it's been three days since his last episode. by the way his seizures occurs a lot of time everyday. got calcification in his brain in his first ultrasound but its all gone now in his ct scan.unfortunately here in my country we have no functional mri, so its difficult to ascertain what really trigger his seizure attack.
Kim

United States

#5 Apr 25, 2006
christian wrote:
my son had seizures since 2004 he's 2 months old, he's taking phenobarbs for two years with no episodes until last week. now he's taking depakote in addition to his pb's. anyway it's been three days since his last episode. by the way his seizures occurs a lot of time everyday. got calcification in his brain in his first ultrasound but its all gone now in his ct scan.unfortunately here in my country we have no functional mri, so its difficult to ascertain what really trigger his seizure attack.
My husband was on phenobarbital for about 5 years and they did prevent him from having seizures. However, a new doctor ordered a bone scan and now he has been diagnosed with osteoporosis because of the phenobarbital. He is now taking Keppra. Be careful of the long term side effects of phenobarbital for your baby. It is a very old drug but it does have side effects from being on it long term.
christian

Muntinlupa, Philippines

#6 May 24, 2006
hello kim can you tell me about keppra?
liz

Raleigh, NC

#7 Jul 10, 2006
I have been on phenobarb for almost years. Can anyone tell me the long term side effects on the brain, specifically the memory.
Any experiences/research on this?
Kelly

AOL

#8 Jul 12, 2006
christian wrote:
hello kim can you tell me about keppra?
Hi Christian. I'm not Kim, but I've been on Keppra for years now and it has gotton my condition under control. I have complex partial seizures and I take over 4,000mg per day. This medicine has good points and bad. It's made my seizures get under control, but I can say that it has caused some serious side effects for me. It made me very short-tempered and sometimes depressed. So much so that my mother spoke to my doctor about it and I had to put on Lexapro to help with those effects. I also take Tegretol, but I may talk to my doctor about getting off of it because of the side effects. Between both of them I would recommend Keppra, despite the side effects because it's the only medication that got my seizures under control. I've had them since I was 15, I was put on a drug study that was unsuccessful, and I had brain surgery that was a failure and worsened my condition.
Mike

AOL

#9 Aug 3, 2006
norvell wrote:
I have had seizures ever since I was inthe 7th grade. They have changed from the alsgrand msl to the temporal lob. These fire up in the temp
While I've heard of infants developing seizures due to high fever I've never seen,or heard of it in adults.I've been diagnosed as suffering from the disorder since 1993 myself & have been on medication ever since but have never suffered a siezure in relation to a fever before.

With all this extreme heat that we've been experiencing lately now I'm beginning to wonder wether or not that can induce a seizure as well & wether or not it's actually been documented to have happened?
Janay

Virginia Beach, VA

#10 Oct 27, 2006
My husband is now 22y/o. He has just began having seizures in april. He had at least one a day. He hasnt had any health issues through out his life. We have been to over 20 different hospital and have seen 100 different doctors, he still hasnt been diagnosed with anything. In may they started him on a medication called dylatin. His episodes stoped up until september. He began to have at least 3 seizures at a time daily not only that the medication(dylatin) became toxic in his system causing him not to be able to walk, see well, & speek. Now after every seizure there is also a lost of memory. But still have not been diagnosed.
Any ideas/experiences/research?
Pauline

Ripley, Canada

#11 Oct 27, 2006
Janay wrote:
My husband is now 22y/o. He has just began having seizures in april. He had at least one a day. He hasnt had any health issues through out his life. We have been to over 20 different hospital and have seen 100 different doctors, he still hasnt been diagnosed with anything. In may they started him on a medication called dylatin. His episodes stoped up until september. He began to have at least 3 seizures at a time daily not only that the medication(dylatin) became toxic in his system causing him not to be able to walk, see well, & speek. Now after every seizure there is also a lost of memory. But still have not been diagnosed.
Any ideas/experiences/research?
I know this is extremely disturbing for you. Has he been diagnosed by a neurologist who specializes in Epilepsy? Is he having tonic clonic seizures? Did he have a head injury? A head injury can trigger epilepsy. Does he get an aura, before the seizure. a sense of smell ( some people smell onions, etc.) giving them time to lay on the floor,away from furniture where they might further injure themself.
Has he ever been tested overnight where they put electrodes onto their skull to test their brain pattern while they sleep? Sometimes this takes several days. Usually they can pinpoint where the problem is and prescribe more effective prescription treatment. sleep deprivation & stress will also trigger seizure activity! You might have an epileptic agency in your area that has a support group, who can help answer your questions and get you on the right track. A ketogenic diet might help along with his medication. A hospital dietitician could help you understand how it works, but this has to be done through your doctor. Good luck in your quest! Keep searching for answers! Your Husband's health depends on it!
Mike

AOL

#12 Nov 5, 2006
Janay wrote:
My husband is now 22y/o. He has just began having seizures in april. He had at least one a day. He hasnt had any health issues through out his life. We have been to over 20 different hospital and have seen 100 different doctors, he still hasnt been diagnosed with anything. In may they started him on a medication called dylatin. His episodes stoped up until september. He began to have at least 3 seizures at a time daily not only that the medication(dylatin) became toxic in his system causing him not to be able to walk, see well, & speek. Now after every seizure there is also a lost of memory. But still have not been diagnosed.
Any ideas/experiences/research?
That's odd because I've been taking dilantin for over 13 years now,and aside from having some side effects on my gums I havn't had any problems with it but thanks for the heads up on the toxicity warning.

You might want to get your husband to talk with his neurologist about changing the dosage to see if that has any effect.When I first began taking it in 93 my physician had to change the dosage because 300mg per day wasn't enough but 400mg per day was too much so they decided to stick with an alternating dosage instead,which so far seems to be working.
MACY

Murfreesboro, TN

#13 Dec 18, 2006
MY LITTLE BROTHER, WHO'S A SENIOR THIS YEAR, HAS EPILEPSY SEIZURES, WELL THAT'S ACCORDING TO THE DOCTORS HE'S SEEN. WE STARTED REALIZING HE HAS SEIZURES WHEN HE WAS ABOUT 14 YEARS OLD. HE'S NOW 17. HIS ATTACKS ARE ALMOST UNBAREABLE TO ME. I WAS PREGNANT ABOUT THREE YEARS AGO AND HAD TO HELP HIM WITH HOMESCHOOLING BECAUSE HE WAS UNABLE TO ATTEND SCHOOL FROM FALLING OFF THE BLEACHERS DURING A SEIZURE ATTACK IN GYM CLASS. WE ARE BIG CHRISTIANS AND BELIEVERS IN CHRIST THAT THROUGH HIM ALL THINGS WILL BE POSSIBLE. WITH TONS OF PRAYING AND FAITH IN GOD, HIS SEIZURES HAVENT ACCURED FOR ALMOST TWO YEARS NOW. BUT JUST LAST WEEKEND WHILE ON A TRIP WITH HIS FRIEND, HE HAD A SEIZURE ATTACK AND SAID HE DID NOT REMEMBER WHAT HAPPENED AND WOKE UP WITH BLOOD ON HIS SHIRT. I'M WORRIED TO DEATH ABOUT IT, AND RESEARCHING ONLINE HAS NOT HELPED ON BIT. PLEASE GIVE ME A RESPONSE "ANYONE"...
THANK YOU! AND GOD BLESS..
Mike

AOL

#14 Dec 19, 2006
MACY wrote:
MY LITTLE BROTHER, WHO'S A SENIOR THIS YEAR, HAS EPILEPSY SEIZURES, WELL THAT'S ACCORDING TO THE DOCTORS HE'S SEEN. WE STARTED REALIZING HE HAS SEIZURES WHEN HE WAS ABOUT 14 YEARS OLD. HE'S NOW 17. HIS ATTACKS ARE ALMOST UNBAREABLE TO ME. I WAS PREGNANT ABOUT THREE YEARS AGO AND HAD TO HELP HIM WITH HOMESCHOOLING BECAUSE HE WAS UNABLE TO ATTEND SCHOOL FROM FALLING OFF THE BLEACHERS DURING A SEIZURE ATTACK IN GYM CLASS. WE ARE BIG CHRISTIANS AND BELIEVERS IN CHRIST THAT THROUGH HIM ALL THINGS WILL BE POSSIBLE. WITH TONS OF PRAYING AND FAITH IN GOD, HIS SEIZURES HAVENT ACCURED FOR ALMOST TWO YEARS NOW. BUT JUST LAST WEEKEND WHILE ON A TRIP WITH HIS FRIEND, HE HAD A SEIZURE ATTACK AND SAID HE DID NOT REMEMBER WHAT HAPPENED AND WOKE UP WITH BLOOD ON HIS SHIRT. I'M WORRIED TO DEATH ABOUT IT, AND RESEARCHING ONLINE HAS NOT HELPED ON BIT. PLEASE GIVE ME A RESPONSE "ANYONE"...
THANK YOU! AND GOD BLESS..
Has he been to see a neurologist & given any medication for it at all?

While research online can help it still cannot replace the one on one interaction a patient recieves when consulting with a medical professional in person.

I wish you & your brother the very best so he will grow up to lead as normal & active a life as possible.Good thing for him that he's got a family that's devoted to providing him with the support & the care that he needs,which is something that not everyone in such a situation is as fortunate to have as he is.
april

Peterborough, Canada

#15 Mar 5, 2007
hi eveyone just doing some resurch on seizures my 6 year old nefew has been having them for three years now we have been in sick kides for the last three years trying to find out y,they have had him on a few differnts meds now and nothing is working.He has been in a coma three times right now he is in sick kids they say he he has epilepsy and grand malls very scary.We r getting no answers and they just keep pumping the phenobarb into him his temp goes way hi and they have to lay him on ice we r getting so frustrated with all of this and we r not sure what to do the meds they have had him about for different meds now and nothing is working as of right now he is on the parpilic acid,keppra,and hi dose of phenobarb,really sad that the doctors have no answers for us please if anyone has any suggustions i am all ears and would likke to know as much as u can tell me thanks so much and god bless anyone who is suffering from this.
barbara

AOL

#16 Mar 16, 2007
Janay wrote:
My husband is now 22y/o. He has just began having seizures in april. He had at least one a day. He hasnt had any health issues through out his life. We have been to over 20 different hospital and have seen 100 different doctors, he still hasnt been diagnosed with anything. In may they started him on a medication called dylatin. His episodes stoped up until september. He began to have at least 3 seizures at a time daily not only that the medication(dylatin) became toxic in his system causing him not to be able to walk, see well, & speek. Now after every seizure there is also a lost of memory. But still have not been diagnosed.
Any ideas/experiences/research?
I would leave that dr. in a New York second because it sounds to me as if his levels have not been drawn. Anyone on seizure medication should have blood work done every so often. That is the only way to tell if the patient has enough medication in his or her system. There is NO reason for a patient to be toxic.
Mike

AOL

#17 Mar 17, 2007
barbara wrote:
<quoted text>
I would leave that dr. in a New York second because it sounds to me as if his levels have not been drawn. Anyone on seizure medication should have blood work done every so often. That is the only way to tell if the patient has enough medication in his or her system. There is NO reason for a patient to be toxic.
You're right Barbara I have to get my levels checked every few months before I can even get a refill on my prescription after a certain point.

I had my last medication level check back in january<that lab tech made a pin cushion outta me in the process> & fortunately for me the levels came back as being where they should be but for some reason my white cell count was elevated.

I've recently been in email corrospondence with another poster here who's been having problems with her medication.She's been complaining of muscle spasms in her facial region as well as ringing in her ears but so far her doctors have been unable to help her even though I suggested that she talk to them about getting her dosage changed to an alternating schedule similar to mine.

She posted her email addy in one of the other threads here.I'll see if I can get the title of that thread for you so that perhaps you can also offer her some support as well.I havn't heard from her in a few days now though so I hope every thing is alright with her.
Mike

AOL

#18 Mar 17, 2007
Barbara,it's in the thread titled "Can these be siezures?"
Dorothy

San Antonio, TX

#19 Apr 25, 2007
My daughter was diagnosed with Juevinile Myo-clonci seizures. She was on Lamictal, but now is on Keppra. She was diagnosed at age 14. Are these seizure medicines a by product of dylatin? Is so has there been cooralation between bone desity issue to include cavities in the teeth? Do we know of a web site that might shed some light? I worry also about the fact that there is some emotional disability. Are these medicines really good for you if you have to take another medicine to combat the side affects of mental instabilty..the seizures do that all by themselves. I would love some input!
Aaron

Holland, MI

#20 Dec 24, 2007
I met someone who has a (now)12 year old daughter who took a natural treatment that worked for her and also someone she knows. Here is her email (copied and pasted) that she sent out. Contact me for more info....

I want to wish you all a very merry Christmas! As I look back over the past year, I am overwhelmed with how wonderful God has been to me and my family. To have the health of my daughter Sydney is priceless. She is a happy 11 (almost 12!) year old girl who is loving life. It is amazing how much she appreciates feeling good. Tomorrow morning she will wake up, enjoy seeing the presents under the tree and have a wonderful day full of laughs and love. She will be thankful for a loving God and that Jesus was sent to earth for us. Last year, she sat in my lap, crying, much of the day. I am so grateful.
We, as humans, have the chance to participate in the miracle process. My friend Danielle did that for us by sharing this product. We can do the same. I look forward to a great year with all of you, changing lives through an amazing product and with a group of amazing people.
We do have a couple of meetings this week!
God Bless,
Sarah

contact me and I'll send you information if you are interested. I can put you in contact with Sarah and her daughter and even their neurologist, if you want proof.

My email is [email protected]
Merry Christmas to everyone!
Aaron

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