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COULD THIS BE ATONIC EPILEPSY OR SOME OTHER TYPE OF EPILEPSY?

Fri, 03/25/2011 - 02:23
Topic: Epilepsy.com Help
HI I AM WRITING FROM AUSTRALIA. OUR 11 YEAR OLD SON HAS BEEN HAVING DAILY FALLS (21 ONE DAY). FOR ABOUT 4 MONTHS.SINCE HIS FIRST FALL HE HAS HAD ALMOST DAILY NAUSEA, A LOT OF DIZZY SPELLS AND HIS APPETITE HAS NEVER BEEN THE SAME. THESE FALLS ARE PRECEDED BY A REALLY BAD TASTE IN HIS MOUTH. HIS LEGS GO WEAK AND YOU CAN SEE HIS KNEES BUCKLE AND HE FALLS TO THE GROUND. 9 OUT OF 10 TIMES HIS HANDS OR KNEES TAKE THE BRUNT OF THESE FALLS. HE IS ALWAYS CONSCIOUS AND ALERT ALTHOUGH OBVIOUSLY DISTRESSED IF HE HAS HURT HIMSELF. HE HAD ONE EEG. NEUROLOGIST SAID IT WAS NORMAL, THEREFORE NO EPILEPSY. I HAVE READ EPILEPSY IS NOT ALWAYS DETECTED ON EEGs. I HAVE ALSO BEEN TOLD BY NEUROLOGISTS THAT IF OUR SON WAS HAVING A SEIZURE HE WOULD DEFINITELY LOSE CONSCIOUSNESS. HE ALSO HAS SWALLOWING DIFFICULTIES. CAN ANYONE TELL ME IF ANY OF THESE SYMPTOMS ARE CONSISTENT WITH ANY TYPE OF EPILEPSY PLEASE. WE SEEM TO BE 100 YEARS BEHIND AS FAR AS NEUROLOGICAL CONDITIONS GO. MY SON ALSO HAS SEVERE TOURETTE'S SYNDROME BUT HE CAN EASILY TELL A 'LEG' TIC WHICH CAN PROPEL HIM FORCEFULLY TO THE GROUND AND WHAT WE CALL A 'TASTE' TIC WHERE HIS KNEES JUST BUCKLE AND HE FALLS FORWARDS. HE HAS NO LOSS OF MUSCLE TONE IN ANY OTHER PART OF HIS BODY. THANK YOU

Comments

Re: ATONIC EPILEPSY?

Submitted by Adz on Sat, 2011-03-26 - 05:30

Hi Perth,

AJ pointed me in your direction - so blame her!

An "AURA" which can be a smell, taste, feeling can proceed a seizure, a lot of people have them, so that's probably what is happening - your son is getting a warning.  If it last a few seconds then his job is to indicate this to you so you can catch him or get him to a seat - even if that means sitting on the floor.

I have had seizure now for what will be 30 years this summer, and when I have Atonic seizures (which is my "normal" seizure type) I am awake - IF NOT ALL THE TIME then at least by the time I hit the ground.  I tell people it's like someone flicked a power switch OFF - ON!  As quick as that.  For your son it may be different or the same.

I won't tell you the neuro is wrong, because I am not qualified (except from experience), however you should consider a second opinion and an MRI scan as well.  This may be of some us, but I can't be sure.

The thing is that you want the best for your child, and sometimes we have to fight for it.

My experience tells me that it's better to fall backwards than forwards - it saves the hands and knees and NO-ONE bursts the backside out of the jeans by falling down! 

 

I don't know if I have been any help to you, but my advice is to gather as much info as you can on E as a whole, keep a seizure diary to show to the neuro - and kep fighting. 

TLBY&KY

Adz

 

Hi Perth,

AJ pointed me in your direction - so blame her!

An "AURA" which can be a smell, taste, feeling can proceed a seizure, a lot of people have them, so that's probably what is happening - your son is getting a warning.  If it last a few seconds then his job is to indicate this to you so you can catch him or get him to a seat - even if that means sitting on the floor.

I have had seizure now for what will be 30 years this summer, and when I have Atonic seizures (which is my "normal" seizure type) I am awake - IF NOT ALL THE TIME then at least by the time I hit the ground.  I tell people it's like someone flicked a power switch OFF - ON!  As quick as that.  For your son it may be different or the same.

I won't tell you the neuro is wrong, because I am not qualified (except from experience), however you should consider a second opinion and an MRI scan as well.  This may be of some us, but I can't be sure.

The thing is that you want the best for your child, and sometimes we have to fight for it.

My experience tells me that it's better to fall backwards than forwards - it saves the hands and knees and NO-ONE bursts the backside out of the jeans by falling down! 

 

I don't know if I have been any help to you, but my advice is to gather as much info as you can on E as a whole, keep a seizure diary to show to the neuro - and kep fighting. 

TLBY&KY

Adz

 

Re: ATONIC EPILEPSY?

Submitted by perth on Sat, 2011-03-26 - 19:57
THANKS SO MUCH ADZ IF MY SON IS HAVING ATONIC SEIZURES I HAVE SEEN ONLINE A GREAT DEAL. THE EXAMPLES OF ATONIC SEIZURES I HAVE SEEN ALWAYS HAVE THE PERSON FALLING BACKWARDS. MY SON FALLS FORWARD AND IT'S EITHER HIS KNEES OR HANDS WHICH TAKE THE BRUNT OF THE FALL. COULD YOU PLEASE TELL ME WITH YOUR SEIZURES HOW OFTEN YOU FELL FORWARD? IS FALLING FORWARD SEEN AS A POSSIBLE ATONIC SEIZURE? FROM WHAT I HAVE SEEN ON THE NET RE: ATONIC SEIZURES EVERYBODY FALLS BACKWARDS. MY SON HAS A TERRIBLE TASTE IN HIS MOUTH AND A COUPLE OF SECONDS LATER HIS LEGS GO WEAK AND THEN THE FORWARD FALL-HE HAS NEVER FALLEN BACKWARDS.IT IS ONLY EVER HIS LEGS WHICH LOSE STRENGTH, NO OTHER PART OF THE BODY. IT WOULD BE SO APPRECIATED TO HAVE SOMEONE CONFIRM THAT AN ATONIC SEIZURE CAN MAKE YOU FALL FORWARDS. O I WILL NEVER LET A DOCTOR DISMISS MY CONCERNS FOR MY CHILDREN - AS PARENTS WE KNOW THEM BETTER THAN ANYONE. BOTH MY CHILDREN HAVE TOURETTE'S, ANOTHER NEUROLOGICAL DISORDER. HAVING DEALT WITH NEUROLOGISTS AND SOMETIMES THEIR ARROGANT ATTITUDE AND IGNORANCE OF TOURETTE'S HAS MADE ME BECOME VERY ASSERTIVE. THANK YOU FOR ADVISE RE: SEIZURE DIARY. I STARTED ONE A COUPLE OF WEEKS AGO EVEN THOUGH THE DOCTOR AT THE HOSPTIAL SAID MY SON'S EEG WAS NORMAL AND DIDN'T HAVE EPILEPSY. I NOW HAVE HIM ON VIDEO FALLING 7 TIMES. I WILL PUT THIS IN FRONT OF THE NEW NEUROLOGIST WE ARE SEEING'S FACE. WE KNOW THERE IS SOMETHING ELSE ON TOP OF TOURETTES WITH OUR SON AND BOTH MY HUSBAND AND I DETERMINED TO GET A DIAGNOSIS OF WHATEVER HE HAS. THANK YOU FOR TAKING THE TIME TO REPLY TO ME!

Re: ATONIC EPILEPSY?

Submitted by Adz on Mon, 2011-03-28 - 13:00

HI PERTH,

THE ONLY TIMES I FALL BACKWARDS IS IF I AM STEPPINMG INTO A BUS OR INTO A BUILDING, WHERE ALL THE WEIGHT IS ON THE BACK LEG.

NORMALLY IT'S FACE-FIRST.

AND YET I STILL LOOK SO GOOD!!!

TLBY&KY

Adz

HI PERTH,

THE ONLY TIMES I FALL BACKWARDS IS IF I AM STEPPINMG INTO A BUS OR INTO A BUILDING, WHERE ALL THE WEIGHT IS ON THE BACK LEG.

NORMALLY IT'S FACE-FIRST.

AND YET I STILL LOOK SO GOOD!!!

TLBY&KY

Adz

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