Guest guest Posted March 7, 2012 Report Share Posted March 7, 2012 As I said Nisha was in the hospital to try and figure out the best option for all her odd complaints of headache, dizziness and then the back sliding of her gait and use of her leftie. So we had an 24 obs VEEG and PET scan and a visit with Dr. Chugani. Things look great nothing uncontrolled as they said in Indianapolis. We described that she cycles in doing well and then weak and looks out to lunch. He said this sounds like ESES in cycles. This is non convulsive electrical activity that looks like status on the EEG. The kids wake up feeling horrible have ADHD sx, anger, behavior problems and learning problems especially memory problems from the brain not being able to restore during sleep. And yes a few had said what helps is Clobazam, valium or bursts of steroid. And yes it is more common with PMG. I hope this helps someone. Now the hard part can be to do it during the EEG. Dr. Chugani is such a great neurologist emails back in a few hrs he said as soon as she starts with night awakening he will get her in for another EEG to make sure this is what we are dealing with. Best of all she does not need surgery!Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2012 Report Share Posted March 8, 2012 Detroit Oh  Childrens of MI Wayne State Dr Dobyns sent us there. They got us in within a month. They are very travel friendly and responses by email. It felt so personal and validated. Diane Sent from Samsung Conquer™ 4G smagid22 wrote: Hi Diane, Where is Dr. Chugani based? All this sounds too familiar. We seem to have every other night be a sleepless one for Ruby after the Clonidine wears off at 3am. Valium made her so drugged out and depressed I couldn't bare to see her in such a zombie state. We are seeing the effects of no sleep and it's brutal (anger, moodiness, ADHD,etc). It seems like every sleep EEG we do she sleeps through the night, and while epileptical abnormalities are there, they never see what happens at home- where she is up for hours talking, singing, unable to sleep. I know this all comes with the PMG territory but I wish I could stop the wakeful times. Thank you for sharing and please update if you come across anything helpful. I have never had surgery suggested as she just has abnormal epileptic activity, not a " classified " seizure-/ or maybe we have not had an experience with a doctor who sees this issue enough. But I can't imagine how taxing this is for the good part of her brain and body if it continues longer. Thanks, > > > As I said Nisha was in the hospital to try and figure out the best option for all her odd complaints of headache, dizziness and then the back sliding of her gait and use of her leftie. So we had an 24 obs VEEG and PET scan and a visit with Dr. Chugani. Things look great nothing uncontrolled as they said in Indianapolis. We described that she cycles in doing well and then weak and looks out to lunch. He said this sounds like ESES in cycles. This is non convulsive electrical activity that looks like status on the EEG. The kids wake up feeling horrible have ADHD sx, anger, behavior problems and learning problems especially memory problems from the brain not being able to restore during sleep. And yes a few had said what helps is Clobazam, valium or bursts of steroid. And yes it is more common with PMG. I hope this helps someone. Now the hard part can be to do it during the EEG. Dr. Chugani is such a great neurologist emails back in a few hrs he said as soon as she starts with night awakening he will get her in for another EEG to make sure this is what we are dealing with. Best of all she does not need surgery!Diane > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2012 Report Share Posted March 8, 2012 Thank you for sharing this. I have felt so ignored and starting to feel like I was just seeing things. It is nice to know someone has validated things. This sounds so much like my daughter. She is 8 and wakes up tossing and turning at night or grinds her teeth really bad. She also only has abnormal spikes on her EEG but they have never captured a seizure so we are left with questioning it is or isn't it. She too has had the zoning out phases that she is there but not. She can communicate but everything is slowed and her eyes are hazy. She is seen at U of M so I may have to consider Detroit. These episodes has decreased tremendously though this year and especially once we stopped all attention meds. > > > > > > As I said Nisha was in the hospital to try and figure out the best option for all her odd complaints of headache, dizziness and then the back sliding of her gait and use of her leftie. So we had an 24 obs VEEG and PET scan and a visit with Dr. Chugani. Things look great nothing uncontrolled as they said in Indianapolis. We described that she cycles in doing well and then weak and looks out to lunch. He said this sounds like ESES in cycles. This is non convulsive electrical activity that looks like status on the EEG. The kids wake up feeling horrible have ADHD sx, anger, behavior problems and learning problems especially memory problems from the brain not being able to restore during sleep. And yes a few had said what helps is Clobazam, valium or bursts of steroid. And yes it is more common with PMG. I hope this helps someone. Now the hard part can be to do it during the EEG. Dr. Chugani is such a great neurologist emails back in a few hrs he said as soon as she starts with night awakening he will get her in for another EEG to make sure this is what we are dealing with. Best of all she does not need surgery!Diane > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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