just do not give up and do not take no for an answer...my son is 4 and he has been going thru alot of seizure like activity since he was little and he also has had speech and motor skills delays and every time i would go to his pediatrition they would say he was fine and not to worry and so at first he was 2 and i figured they were right and he was only two so give it time...then3 came and i said enough is enough, by this pt he was making weird movements in his sleep more frequent and also
@anglros13 having staring spells as well during the day....he would stop breathing at night too and not be alert at all....so i have been going thru gillette childrens and i seen the sleep specialist first and they sent him for an eeg and sleep study...the doc stated that he was actually losing 3 to 4 breaths at a time more then 25 times a night and that is alot for a child his age but i was not to worry at all and he is fine...i decided i wanted to go to the neurologist myself and they sent
@anglros13 us right in for a EEG and study throughout the dayand night and they said they were gonna keep us there until i felt he had the same things he did at home, and sure enough they got good video and all that of him actually having seizures so i wasnt stupid after all like they made it seem...u are doing everything right so keep it up and just be strong....keep going till u get answers, at least one doc will understand and do their job
Ok. So I am back. MyI am changing to have this seperate. So Kaitlyn's EEG came back Abnormal but we took her to Childrens in Los Angeles and they laughed at the videos and told me she was infantlie masterbastion or it could be dystonia. It really Irratated me. She stiffens up and can not be moved. And then i was asked if I ever put her in the corner. What??? I could not believe this either. So I am suppose to get a VEEG done and hope she has a bad day and has an episode.
Update 6/12/10: Spinal tap also came out normal. Waiting for genetic test results. Episodes continue to progress. Starting to do something just a little different, will have to try and catch it on video. Still no diagnosis.
@monjanse Her EEG's have shown no signs of epilepsy. However, her geneticist tells me that he has seen cases where the EEG's are clean and yet the patient IS having seizures. :( We are at a loss. Thanks for your post!
@lucieann21 Thank you so much for your kind words. To date we have not gotten a diagnosis for her condition. We are now waiting for her genetics test results to come in. All other tests have come back normal. Just taking it one day at a time. Thanks for your post!
Oblivous to me. Just staring into space, though I've deleted a lot of the staring because it was making the video too long. Abnormal hand movements. A little tongue action, though still not the chewing or tongue-in-cheek I've been seeing her do lately. Scratching away at her eczema. Small head jerk towards the end. This is 1 in the cluster of episodes.
just do not give up and do not take no for an answer...my son is 4 and he has been going thru alot of seizure like activity since he was little and he also has had speech and motor skills delays and every time i would go to his pediatrition they would say he was fine and not to worry and so at first he was 2 and i figured they were right and he was only two so give it time...then3 came and i said enough is enough, by this pt he was making weird movements in his sleep more frequent and also
anglros13 7 months ago
@anglros13 having staring spells as well during the day....he would stop breathing at night too and not be alert at all....so i have been going thru gillette childrens and i seen the sleep specialist first and they sent him for an eeg and sleep study...the doc stated that he was actually losing 3 to 4 breaths at a time more then 25 times a night and that is alot for a child his age but i was not to worry at all and he is fine...i decided i wanted to go to the neurologist myself and they sent
anglros13 7 months ago
@anglros13 us right in for a EEG and study throughout the dayand night and they said they were gonna keep us there until i felt he had the same things he did at home, and sure enough they got good video and all that of him actually having seizures so i wasnt stupid after all like they made it seem...u are doing everything right so keep it up and just be strong....keep going till u get answers, at least one doc will understand and do their job
anglros13 7 months ago
i feel bad 4 her..
~GOD BLESS THE CHILD~
MegaApples2apples 11 months ago
Ok. So I am back. MyI am changing to have this seperate. So Kaitlyn's EEG came back Abnormal but we took her to Childrens in Los Angeles and they laughed at the videos and told me she was infantlie masterbastion or it could be dystonia. It really Irratated me. She stiffens up and can not be moved. And then i was asked if I ever put her in the corner. What??? I could not believe this either. So I am suppose to get a VEEG done and hope she has a bad day and has an episode.
carrielope 1 year ago
Perhaps a mild form of dystonia? Poor little sweetie, I hope they are not painful for her.
aschwer79 1 year ago
Update 6/12/10: Spinal tap also came out normal. Waiting for genetic test results. Episodes continue to progress. Starting to do something just a little different, will have to try and catch it on video. Still no diagnosis.
rballeto 1 year ago
has she epilepsy?
monjanse 1 year ago
@monjanse Her EEG's have shown no signs of epilepsy. However, her geneticist tells me that he has seen cases where the EEG's are clean and yet the patient IS having seizures. :( We are at a loss. Thanks for your post!
rballeto 1 year ago
Bless the little angel... she's so beautiful. I pray for a diagnosis for you and that it all works out in the end for the very best @>-->--
lucieann21 2 years ago
@lucieann21 Thank you so much for your kind words. To date we have not gotten a diagnosis for her condition. We are now waiting for her genetics test results to come in. All other tests have come back normal. Just taking it one day at a time. Thanks for your post!
rballeto 1 year ago
Oblivous to me. Just staring into space, though I've deleted a lot of the staring because it was making the video too long. Abnormal hand movements. A little tongue action, though still not the chewing or tongue-in-cheek I've been seeing her do lately. Scratching away at her eczema. Small head jerk towards the end. This is 1 in the cluster of episodes.
rballeto 2 years ago