Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Glen, My daughter's malformation is in all lobes of her right side including her motor strip. So she has cerebral palsy on her total left side similar to a stroke. We had a new neuro eval and they asked her if the feeling of her sides were different. She is 5 so I don't know what she exactly she can verbalize it but she did say it feel funny. The neuro said that when you have damage to your parietal lobe your sensation is processed different. Also the abnormal spiking in that area of damage causes issues with that area. Yes Nisha complaints of headaches, nausea and weakness and distractions worse if her spiking is worse or possible non convulsive status during sleep. The supplement CoQ10 200 mg daily has really helped her with these symptoms. It is an anti inflammation and antioxidant. What meds, diet or supplements have you tried? What does your EEG show? Where is the PMG damage?Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 Diane, it is on the right side. there is a picture of my brain on the PMG FACEBOOK SITE. I have tried most seizures med.. but ended up with severe allergic reactions to them... and none so far has worked...I haven't tried any over the counter supplements yet and all the neurologists that I have seen so far are not too familiar with PMG or my Hypothalamic Hamartoma....... I am the Ambassador of the www.hopeforhh.org<http://www.hopeforhh.org/> group since I am their oldest survivor...all the children and young adults call me Uncle Glen. I do visit most of the survivors and would love to do the same for the PMG survivors. I have been through many MRI's, EEG's VEEG's and 7 times on 24hr-1 week of seizure monitoring and each time it shows no electrical activity on any of my seizures.. I have gelastic, partial complex, drop, gran mal, and clonic tonic seizures... all neuro so far has told me that all my seizures are psuedo seizures(fake or psychological). I am waiting to go to Seattle Chiildrens to meet Neuro there. feel free to email or call. GLEN SCHALLMAN CELL RE: Sleeping all day Glen Glen, My daughter's malformation is in all lobes of her right side including her motor strip. So she has cerebral palsy on her total left side similar to a stroke. We had a new neuro eval and they asked her if the feeling of her sides were different. She is 5 so I don't know what she exactly she can verbalize it but she did say it feel funny. The neuro said that when you have damage to your parietal lobe your sensation is processed different. Also the abnormal spiking in that area of damage causes issues with that area. Yes Nisha complaints of headaches, nausea and weakness and distractions worse if her spiking is worse or possible non convulsive status during sleep. The supplement CoQ10 200 mg daily has really helped her with these symptoms. It is an anti inflammation and antioxidant. What meds, diet or supplements have you tried? What does your EEG show? Where is the PMG damage?Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 Dr. Dobyns and team might review your latest MRI and EEG and give you some suggestions about your symptoms. Here is some of their information to contact: Research coordinators â–¸ DDRC Reviews Email: mrireview@... Please send ALL requests for patient reviews AND follow-up to this email addressâ–¸ Hailly Email: hailly.butler@... Phone: â–¸ Carissa Email: carissa.adams@... Phone: 206-884-pending To: polymicrogyria From: turtlebrain@... Date: Tue, 22 May 2012 07:56:03 -0700 Subject: Re: Sleeping all day Glen Diane, it is on the right side. there is a picture of my brain on the PMG FACEBOOK SITE. I have tried most seizures med.. but ended up with severe allergic reactions to them... and none so far has worked...I haven't tried any over the counter supplements yet and all the neurologists that I have seen so far are not too familiar with PMG or my Hypothalamic Hamartoma....... I am the Ambassador of the www.hopeforhh.org<http://www.hopeforhh.org/> group since I am their oldest survivor...all the children and young adults call me Uncle Glen. I do visit most of the survivors and would love to do the same for the PMG survivors. I have been through many MRI's, EEG's VEEG's and 7 times on 24hr-1 week of seizure monitoring and each time it shows no electrical activity on any of my seizures.. I have gelastic, partial complex, drop, gran mal, and clonic tonic seizures... all neuro so far has told me that all my seizures are psuedo seizures(fake or psychological). I am waiting to go to Seattle Chiildrens to meet Neuro there. feel free to email or call. GLEN SCHALLMAN CELL RE: Sleeping all day Glen Glen, My daughter's malformation is in all lobes of her right side including her motor strip. So she has cerebral palsy on her total left side similar to a stroke. We had a new neuro eval and they asked her if the feeling of her sides were different. She is 5 so I don't know what she exactly she can verbalize it but she did say it feel funny. The neuro said that when you have damage to your parietal lobe your sensation is processed different. Also the abnormal spiking in that area of damage causes issues with that area. Yes Nisha complaints of headaches, nausea and weakness and distractions worse if her spiking is worse or possible non convulsive status during sleep. The supplement CoQ10 200 mg daily has really helped her with these symptoms. It is an anti inflammation and antioxidant. What meds, diet or supplements have you tried? What does your EEG show? Where is the PMG damage?Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2012 Report Share Posted May 22, 2012 THANK YOU!!!! already contacted Carissa 2 weeks ago...just waiting for MRI's to be transferred there! RE: Sleeping all day Glen Glen, My daughter's malformation is in all lobes of her right side including her motor strip. So she has cerebral palsy on her total left side similar to a stroke. We had a new neuro eval and they asked her if the feeling of her sides were different. She is 5 so I don't know what she exactly she can verbalize it but she did say it feel funny. The neuro said that when you have damage to your parietal lobe your sensation is processed different. Also the abnormal spiking in that area of damage causes issues with that area. Yes Nisha complaints of headaches, nausea and weakness and distractions worse if her spiking is worse or possible non convulsive status during sleep. The supplement CoQ10 200 mg daily has really helped her with these symptoms. It is an anti inflammation and antioxidant. What meds, diet or supplements have you tried? What does your EEG show? Where is the PMG damage?Diane Quote Link to comment Share on other sites More sharing options...
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