Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Crystal, Chrystine has febrile seizures with fever. She needs to have an eeg and ct scan of her head redone next week... last thursday, with her fever over 106, she had over 10 febrile seizures. thinking of eva chrystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Crystall, I have heard of other children with CHARGE who have seizures, but let the ophthamologis rule out the nystagmus first. I would ask her pediatrician if he/she thinks Eva should have a consult with neurology. > > Eva had PT today and her and Eva's other therapists think Eva maybe > having small seizures. Sometimes her eyes will rapidly move back and > forth and she doesnt move. Does anyone else have a CHARGEr who has > done this? We have an eye appointment a week from monday and one of > her therapist said it was nastigment (sorry I am not good at spelling) > but now they are worried about seizures. > Can anyone give me some insite please?? > > Thank you, > Crystal mom to (11), (3), and Eva (22 month old CHARGEr) > wife to Dan in Illinois > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 JD was hospitalized about a week ago due to sleep apnea episodes and to get some other tests done for him for a future surgery (choanal atresia repair) and to rule out the presence of a vascular ring and to get a check up on his ventriculomegaly. They did an EEG and found some small seizure (very mild) activity when he slept which they said was treatable. JD doesnt have nystigmus (commonly referred to as dancing eyes). He was placed on Tegretol, a medication to help the seizure activity. Have they done an EEG? Have they consulted with a neurosurgeon? I would ask what kind of seizures they are suspecting. If they are mild in nature then I would guess they can be treated with meds. I hope this helps. , , Olivia (17 months) and (cHArgEd 17 months) Seizures Eva had PT today and her and Eva's other therapists think Eva maybe having small seizures. Sometimes her eyes will rapidly move back and forth and she doesnt move. Does anyone else have a CHARGEr who has done this? We have an eye appointment a week from monday and one of her therapist said it was nastigment (sorry I am not good at spelling) but now they are worried about seizures. Can anyone give me some insite please?? Thank you, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois ________________________________________________________________________ Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Crystal, Peyton does this and his opthamologist has always told me his nystagmus is him using the best part of his vision that he has(sometimes nystagmus can come from other neurological sourceslike seizures etc.) He has actually witnessed him doing it and said that was what it was. I doubt ruling out seizures would be a big deal though because is right, seizures aren't too terribly uncommon w/ CHARGE. Good luck! Corrie > > JD was hospitalized about a week ago due to sleep apnea episodes and to > get some other tests done for him for a future surgery (choanal atresia > repair) and to rule out the presence of a vascular ring and to get a check > up on his ventriculomegaly. They did an EEG and found some small seizure > (very mild) activity when he slept which they said was treatable. JD doesnt > have nystigmus (commonly referred to as dancing eyes). He was placed on > Tegretol, a medication to help the seizure activity. > > Have they done an EEG? Have they consulted with a neurosurgeon? I would > ask what kind of seizures they are suspecting. If they are mild in nature > then I would guess they can be treated with meds. I hope this helps. > > , , Olivia (17 months) and (cHArgEd 17 months) > > > > Seizures > > Eva had PT today and her and Eva's other therapists think Eva maybe > having small seizures. Sometimes her eyes will rapidly move back and > forth and she doesnt move. Does anyone else have a CHARGEr who has > done this? We have an eye appointment a week from monday and one of > her therapist said it was nastigment (sorry I am not good at spelling) > but now they are worried about seizures. > Can anyone give me some insite please?? > > Thank you, > Crystal mom to (11), (3), and Eva (22 month old CHARGEr) > wife to Dan in Illinois > > __________________________________________________________ > Check out the new AOL. Most comprehensive set of free safety and security > tools, free access to millions of high-quality videos from across the web, > free AOL Mail and more. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Thank you all for your input. Eva never had a EEG done which my husband and I are shocked because she had fluid on her brain before she was born. I am hoping the next week goes fast so I can try and get some answers. Seizures was not something I wanted to hear and since they are all so worried about it, it makes me worry. Hugs, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois > > Crystal, Chrystine has febrile seizures with fever. She needs to have an eeg > and ct scan of her head redone next week... last thursday, with her fever > over 106, she had over 10 febrile seizures. > > thinking of eva > chrystal > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Shortly (and I mean shortly, it was like 2 days) before Evan was discharged home the first time from Children's, we started noticing some funny eye movements. Both eyes would start jiggling in a downward motion--he would do it for 15-30 seconds at a time, and these episodes would happen several times last 5-10 minutes.. I reminded me a little of how when he would desat really low, his eyes would roll backwards. Only this was down, not up, and his heart rate, breathing rate, and sats stayed stable. I thought it looked like vertical nystagmus (and sudden onset, vertical nystagmus is not a great thing to have--there are some pretty serious things that need to be ruled out). His attending ordered an MRI and a neuro consult. The MRI turned out to be normal, and the eye movements were actually ocular bobbing and not nystagmus (the difference being that with bobbing, the movement is the same speed in both directions of the " jiggle " , and nystagmus has a " beat " --the movement is slow in on direction with a quick corrective jerk...I look at eyes all the time, and I had difficulty appreciating this difference with Evan). Ocular bobbing is less worrisome. No EEG was ever done, but the neurologist was confident they weren't seizures. They just monitored Evan and as he got older he stopped doing it--the last time I saw him do it was over a year ago. If you have a sat monitor still, you could try hooking Eva up to it and see if you can " catch " her during one of these spells. If her sats and heart rate don't change, it's probably not a seizure. The patients I have seen with nystagmus, have it all the time (not just occasionally). Usually, there is a certain position that minimizes the jiggling (called the " null point " ) and often the person will use a head turn to keep the eyes in this position as much as possible. Some people are lucky and the null point is looking straight ahead, but for others it is looking right or left. I have even see rotary nystagmus (the eye jiggle is rotational, instead of side to side). The person's brain adjusts so that the world looks still (it doesn't move with their eyes). I hope you get some answers soon. (mom to Evan, 19 months) supermama95 wrote: Eva had PT today and her and Eva's other therapists think Eva maybe having small seizures. Sometimes her eyes will rapidly move back and forth and she doesnt move. Does anyone else have a CHARGEr who has done this? We have an eye appointment a week from monday and one of her therapist said it was nastigment (sorry I am not good at spelling) but now they are worried about seizures. Can anyone give me some insite please?? Thank you, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois --------------------------------- Get your own web address. Have a HUGE year through Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 yep sarah ur right mystagmis all the time but there r times evas could get worse in certain times and im thinking of times such as when shes working real hard and xstuff like that coz thats when peopl ehave noticed mine go more so > > Shortly (and I mean shortly, it was like 2 days) before Evan was > discharged home the first time from Children's, we started noticing some > funny eye movements. Both eyes would start jiggling in a downward motion--he > would do it for 15-30 seconds at a time, and these episodes would happen > several times last 5-10 minutes.. I reminded me a little of how when he > would desat really low, his eyes would roll backwards. Only this was down, > not up, and his heart rate, breathing rate, and sats stayed stable. > > I thought it looked like vertical nystagmus (and sudden onset, vertical > nystagmus is not a great thing to have--there are some pretty serious things > that need to be ruled out). His attending ordered an MRI and a neuro > consult. The MRI turned out to be normal, and the eye movements were > actually ocular bobbing and not nystagmus (the difference being that with > bobbing, the movement is the same speed in both directions of the " jiggle " , > and nystagmus has a " beat " --the movement is slow in on direction with a > quick corrective jerk...I look at eyes all the time, and I had difficulty > appreciating this difference with Evan). Ocular bobbing is less worrisome. > No EEG was ever done, but the neurologist was confident they weren't > seizures. They just monitored Evan and as he got older he stopped doing > it--the last time I saw him do it was over a year ago. > > If you have a sat monitor still, you could try hooking Eva up to it and > see if you can " catch " her during one of these spells. If her sats and heart > rate don't change, it's probably not a seizure. > > The patients I have seen with nystagmus, have it all the time (not just > occasionally). Usually, there is a certain position that minimizes the > jiggling (called the " null point " ) and often the person will use a head turn > to keep the eyes in this position as much as possible. Some people are lucky > and the null point is looking straight ahead, but for others it is looking > right or left. I have even see rotary nystagmus (the eye jiggle is > rotational, instead of side to side). The person's brain adjusts so that the > world looks still (it doesn't move with their eyes). > > I hope you get some answers soon. > > (mom to Evan, 19 months) > > supermama95 <supermama95@... <supermama95%40yahoo.com>> wrote: > Eva had PT today and her and Eva's other therapists think Eva maybe > having small seizures. Sometimes her eyes will rapidly move back and > forth and she doesnt move. Does anyone else have a CHARGEr who has > done this? We have an eye appointment a week from monday and one of > her therapist said it was nastigment (sorry I am not good at spelling) > but now they are worried about seizures. > Can anyone give me some insite please?? > > Thank you, > Crystal mom to (11), (3), and Eva (22 month old CHARGEr) > wife to Dan in Illinois > > --------------------------------- > Get your own web address. > Have a HUGE year through Yahoo! Small Business. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 , What a great way to describe nystagmus and how it is different than other conditions!! pam > -- Pamela J. , M.A., CAGS Licensed Educational Psychologist Deafblind Program Perkins School for the Blind 175 N. Beacon St. Watertown, MA 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 Crystal, has seizures--a few different types, we suspect. With hers, her eyes don't dart, but with with one type she does have rapid eye blinking. There is also usually a pause with a seizure--like the brain is spacing out for a moment. I'd have Eva checked out by both an opthalmologist and a neurologist. If you can, get some video of her doing this and show it to the neurologist. She/he may be able to tell, just by looking at the video, whether it might be seizures or not. If suspected, they will probably want to do a 24-hour EEG on her. Good luck, and let us know what you find out. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2007 Report Share Posted February 16, 2007 The video is a good idea. Because it can be like as soon as you take the car to the mechanic, it stops making the noise...we were lucky he did the eye movements for the neurologist. Evan's ophthalmologist never did see the eye movements. (mom to Evan, 19 months) Kauffman wrote: Crystal, has seizures--a few different types, we suspect. With hers, her eyes don't dart, but with with one type she does have rapid eye blinking. There is also usually a pause with a seizure--like the brain is spacing out for a moment. I'd have Eva checked out by both an opthalmologist and a neurologist. If you can, get some video of her doing this and show it to the neurologist. She/he may be able to tell, just by looking at the video, whether it might be seizures or not. If suspected, they will probably want to do a 24-hour EEG on her. Good luck, and let us know what you find out. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 Has anyone been experiencing a spike in seizure patients over the last week?? We have had several students with history of epilepsy have seizures over the last 4 days - these were real seizures and not a kid getting out of Alegbra because they forgot homework. I have read several research papers over the years indicating extreme fluctuations in temperature and barometric pressure is a significant seizure trigger because of intercrainial changes. What do you think????? -MH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 There is a significant disproportionately high number of seizure calls in Galveston. It is not uncommon to run four or five seizure calls per shift out of the 15 - 20 calls we average per unit per day. There does not seem to be any predisposing factors. My theory as to why there are so many seizures was the possibility of toxins in the air released from the refinery in Texas City or any of the numerous plants in the region. Prolonged exposure to the residents might be a cause. TW --- Hudson wrote: > Has anyone been experiencing a spike in seizure > patients over the last week?? We have had several > students with history of epilepsy have seizures over > the last 4 days - these were real seizures and not a > kid getting out of Alegbra because they forgot > homework. I have read several research papers over > the years indicating extreme fluctuations in > temperature and barometric pressure is a significant > seizure trigger because of intercrainial changes. > What do you think????? > > -MH > > > Lt. Tony Asst. Director of Marketing & Sales Front-line Protective Servcies 2775 Villa Creek, Suite 270 Dallas, Texas 75234 Office: Ext. 115 Direct: Fax: t_wright@... ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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