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

Fri, 03/25/2011 - 02:23
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 Allina on Sat, 2011-03-26 - 11:01

Thanks for your help Adz, and hey! I wasn't saying the neuro was wrong....just maybe misinformed (haha) I was probably more or less irritated because I have had THAT line shoved down my throat (you are conscious--no seizure) and that is why I've been living with miserable, daily (and nightly) interrupting seizures for ten years. That is perhaps why I was so mad. It is the next day now. I've had time to chill.

But I still am kind of urging the seizure specialist. I'm no doctor either, but (for example) when I said "deja vu" he nodded and said "yep" my other doctor looked at me like I was nuts.

But thanks for getting on here Adz and helping out! I knew they could use your perception because of your atonics!

Catch up soon!

AJ

 

Thanks for your help Adz, and hey! I wasn't saying the neuro was wrong....just maybe misinformed (haha) I was probably more or less irritated because I have had THAT line shoved down my throat (you are conscious--no seizure) and that is why I've been living with miserable, daily (and nightly) interrupting seizures for ten years. That is perhaps why I was so mad. It is the next day now. I've had time to chill.

But I still am kind of urging the seizure specialist. I'm no doctor either, but (for example) when I said "deja vu" he nodded and said "yep" my other doctor looked at me like I was nuts.

But thanks for getting on here Adz and helping out! I knew they could use your perception because of your atonics!

Catch up soon!

AJ

 

Re: ATONIC EPILEPSY?

Submitted by perth on Sat, 2011-03-26 - 19:55
AJ thanks very much for directing my question to Adz regarding falling seizures, I really appreciate it!! My husband and I are are very irritated with the lack of neurological expertise here. I asked Adz if he/she falls forwards often. My son has never fallen backwards and backward falls are the only videos I have seen online of Atonic seizures. I am with you regarding neuro. The ones we have here (we are only a relatively small city)are very frustrating. Dealing with neurologists regarding Tourette's Syndrome (not a great deal people with the Syndrome here - again fairly small city) has been the most frustrating, upsetting and anger provoking experience. We have had to have other specialists from around the globe email our neuros with info re: Tourette's. My son has told them first hand, but hey, he is only the one with the disorder, what would he know!. From experience I have found people living with neurological conditions are the best and most reliable source of information. Thanks again AJ, probably need a chill pill myself. perth

Re: COULD THIS BE ATONIC EPILEPSY?

Submitted by MichaelK on Sat, 2011-03-26 - 11:11

I have had these types of seizures many times and in many types of dangerous places. Neurologists often confuse these types of attacks with complex partial seizures or sleeping disorders. The forrmer is probably the reason that your "Neurologist" asked if your son "lost consciousness" when these episodes happen.

Go to an epileptologist ASAP. Always ask the doctor to further explain their opinions. Take a video of a couple of these episodes yourself and show them to the doctor. Follow everyone else's advice and, when your son goes outside, he may need to wear an American football player's helmet for safety.

Good luck!

I have had these types of seizures many times and in many types of dangerous places. Neurologists often confuse these types of attacks with complex partial seizures or sleeping disorders. The forrmer is probably the reason that your "Neurologist" asked if your son "lost consciousness" when these episodes happen.

Go to an epileptologist ASAP. Always ask the doctor to further explain their opinions. Take a video of a couple of these episodes yourself and show them to the doctor. Follow everyone else's advice and, when your son goes outside, he may need to wear an American football player's helmet for safety.

Good luck!

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