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Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?
Wed, 08/09/2006 - 23:52Comments
Re: Experience with Cortext Dysplasia/Cortical Dysplasia & Surge
Submitted by shelbelle on Sun, 2008-12-28 - 11:04
Hi, My Son Kaleb will be seven next Sunday. He was diagnoised in December with FCD .
He started ahving obvious seziures at the age of 18 months. but they were always to short and by the time I would get him to the ER or the doc they would have ended.
until he got a fever of 106 for NO reason he went into convulsions. I took him to the ER they treated the fever and explained many kids get Ferible Seizures...
months later he was very tired all day.. he couldnt stay awake. I took him for a walk and got him a slushie from the store hoping that would wake him up when we got home he told me he wanted to nap again I said no.. and then I heard a thump he fell down unconscience it seemed I called 911.
the Paramedics told me it looked like a status seizure.
but of course he woke up enroute to the ER but this time the Paramedic's told the doc's what they saw.
finally we got reffered to a Peadtrician ...
( keep in mind we live in Canada so we have to get a Dr's refferal to see any specialist)
She said he had a inner ear problem...
I knew that wasn't right I went with my gut I told her I think it was a seizure
6 weeks later 2 EEG's later and a few other tests and yep Mom was right it was epilepsy.
( Complex Partial and Generalized on both EEG's both starting on the left side.)
the first drug we tried was tegretol. whioch did work but it destroyed his platelets.
then we had to abruptly stop all medications as his platelets were too low so he started having approx. 5-10 seizures a day.
when he was in kindergarten.
finally they tried Clobazam ( not available in the US)
that didnt work.
now we are on Depakene.. for the last almost 3 years it works but then when his body adjusts his platelets drop and he seizes all the time 1-5 times a week again...
Last year on his B-day they did the first MRI scan it showed a abnormalitie in the Temporal lobe that was all the Dr would tell us, he wouldnt even let us see the MRI reports he said he wanted to re-do the MRI at Sick-Kids in Toronto again... We agreed.. 10 months later they redid it and they found it was FCD
The Dr told us Surgery was an option and that he would like to do the week long EEG and induce seizures at Sick-Kids.. we told him maybe... but not yet.
( Alot to digest for now as it stands)
Kaleb is a C student he likes school, has a tonne of friends, he is the best at Video Games and can do complex math ( sometimes) and he can read a bit too.. his speech and language is severly abnormal he puts words in the wrong order and yet he can spell them all. he cant write a proper sentence nor can he speak out loud without twisting the words a bit...
a few questions with you all..
will Surgery help with the speech issue?
and to those who didnt do the surgery why not?
Hi, My Son Kaleb will be seven next Sunday. He was diagnoised in December with FCD .
He started ahving obvious seziures at the age of 18 months. but they were always to short and by the time I would get him to the ER or the doc they would have ended.
until he got a fever of 106 for NO reason he went into convulsions. I took him to the ER they treated the fever and explained many kids get Ferible Seizures...
months later he was very tired all day.. he couldnt stay awake. I took him for a walk and got him a slushie from the store hoping that would wake him up when we got home he told me he wanted to nap again I said no.. and then I heard a thump he fell down unconscience it seemed I called 911.
the Paramedics told me it looked like a status seizure.
but of course he woke up enroute to the ER but this time the Paramedic's told the doc's what they saw.
finally we got reffered to a Peadtrician ...
( keep in mind we live in Canada so we have to get a Dr's refferal to see any specialist)
She said he had a inner ear problem...
I knew that wasn't right I went with my gut I told her I think it was a seizure
6 weeks later 2 EEG's later and a few other tests and yep Mom was right it was epilepsy.
( Complex Partial and Generalized on both EEG's both starting on the left side.)
the first drug we tried was tegretol. whioch did work but it destroyed his platelets.
then we had to abruptly stop all medications as his platelets were too low so he started having approx. 5-10 seizures a day.
when he was in kindergarten.
finally they tried Clobazam ( not available in the US)
that didnt work.
now we are on Depakene.. for the last almost 3 years it works but then when his body adjusts his platelets drop and he seizes all the time 1-5 times a week again...
Last year on his B-day they did the first MRI scan it showed a abnormalitie in the Temporal lobe that was all the Dr would tell us, he wouldnt even let us see the MRI reports he said he wanted to re-do the MRI at Sick-Kids in Toronto again... We agreed.. 10 months later they redid it and they found it was FCD
The Dr told us Surgery was an option and that he would like to do the week long EEG and induce seizures at Sick-Kids.. we told him maybe... but not yet.
( Alot to digest for now as it stands)
Kaleb is a C student he likes school, has a tonne of friends, he is the best at Video Games and can do complex math ( sometimes) and he can read a bit too.. his speech and language is severly abnormal he puts words in the wrong order and yet he can spell them all. he cant write a proper sentence nor can he speak out loud without twisting the words a bit...
a few questions with you all..
will Surgery help with the speech issue?
and to those who didnt do the surgery why not?
Re: Experience with Cortext Dysplasia/Cortical Dysplasia & Surge
Submitted by solis on Thu, 2006-08-10 - 00:46
Hi Shannon :) First off, here are some translated definitions: Cortical dysplasia': "An abnormality in the development and organization of the cerebral cortex that can cause seizures and other neurologic disorders." source:http://www.epilepsy.com/epilepsy/glossary.html Cerebral Cortex: "The outer portion of the brain, consisting of layersof nerve cells and the pathways that connect them. The cerebralcortex is the part of the brain in which thought processes take place.In Alzheimer's disease, nerve cells in the cerebral cortex die." source: http://medical-dictionary.com/dictionaryresults.php info on cortical dysplasia: http://www.epilepsy.com/cgi-bin/htsearch info on cortical dysplasia surgery: http://www.epilepsy.com/cgi-bin/htsearch hope that helps ~sol