Guest guest Posted May 8, 2012 Report Share Posted May 8, 2012 Welcome to the group! We are on facebook too. I'm sorry that I do not have more information about your daughters diagnosis except I have take care of children with Lissencephaly. My daughter has Unilateral PMG it extensive on the one side of her brain. She is doing very well she does have cerebral palsy on her whole left side, visual neglect, slowness to her processing some learning problems but is in regular school and activities and lots of therapy. Seizures are the most difficult issue.Don't let the doctors set limits on you or your daughter. The book The Brain that Changes Itself talks about plasticity it is a good concept to understand. This diagnosis does not change who your baby is love her and enjoy her take one day at a time. Get into early therapy their are many intensive programs. The poem Welcome to Holland really helped me too.Diane To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody... I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2012 Report Share Posted May 8, 2012 Hi! All these terms are confusing and it took me a while to sort it all out too.  Basically all of the terms lissencephaly, polymicrogyria, and pachygyria are referring to the numbers of folds (gyria) on the brain and the size of the folds (thin, thick).  A classic lissencephaly case has no folds (gyria) on the brain, polymicrogyria refers to many small folds and pachygyria refers to some folds, less than the normal amount. Our son, Calvin, also has a mixture of these conditions. He has polymicrogyria on the occipital lobe, pachygyria on the frontal and temporal lobes and a few areas of lissencephaly. If you google lissencephaly you will find out it is the worst of all three... be encouraged your baby is not a straight lissencephaly case. How old is your baby? How is she doing? Is she breathing well on her own, eating, etc.? It is such a scary ride at first and devastating but you will survive one day at a time. You are in the most difficult time now. Love your little one and realize we are here to support you. Take Care, Kara Dedert ________________________________ To: polymicrogyria Sent: Monday, May 7, 2012 11:24 PM Subject: Hello everybody...  I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2012 Report Share Posted May 8, 2012 Hi Gemini, Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody... I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2012 Report Share Posted May 8, 2012 They are all gods gift. I feel were chosen to take care of these special babies. My little Drake's first name is actually . It means A gift fom god. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2012 Report Share Posted May 10, 2012 That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing ________________________________ To: PMGGRoup <polymicrogyria > Sent: Tuesday, May 8, 2012 12:57 PM Subject: RE: Hello everybody... Hi Gemini, Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody... I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2012 Report Share Posted May 13, 2012 Thank you all for the uplifting replies. It is so nice to find others in similar situations as ours. Here is a little more of our story so far... My daughter, Layla Grace is going to be 2 next month. She is surprising us all every day. This time last year I was very concerned, the physical problems I knew we could get around but I was so worried about her mental development as I did not feel she understood the concept of anything, or anything we were saying, did not know the difference of a ball or baby doll. Over the past year her development has soared. This past month alone she has learned so many new things, and even the smallest and most simple things make me so excited. She walks, runs, dances, jumps, plays pretend with her kitchen and baby dolls. She takes very good care of her babies, she shares everything from her cookies to her sippy cup with everybody from family, her dolls, and even the pets. She does not talk yet, but she does understand everything we say and follows instruction very well. She is finally seeming to try to speak as she not working as hard to walk and learn the physical things now. Her only sounds before were " AHHHHHHHH " sounds, now her sounds are streaming together more like sentences and her babbles are sounding more like she is trying to get words out as she is learning to make different constanant sounds, It seems like she is saying DADA and trying to say Mama. She still gets choked pretty much on a daily basis and most of her food comes back out of her mouth as she does not have the strength and control of her mouth, throat and tongue muscles yet, but we are working on it. She can do pretty good with baby food mixed with cereal for thickness, she takes pediasure for the nutrition she misses from solids. We have therapy once, twice, somtimes three times a day, and then I continue to work with her all day on every little thing that would normally come naturally to other children. Of course I have my concerns, but I couldn't be happier with her progress. I know she is doing great, and will hopefully continue to do so. As for seizures, they are still a mystery to us. There were some things the doctors and I were worried may be seizures that turned out not be when we had the video EEG, they did not capture any actual seizures during the 4 day hospital stay, but they did say it showed A LOT of frequent spikes in brain activity that were potential seizure activity, and to always be prepared for them. So we still are not sure if she is having seizures or not, and will probably have another EEG done before long. She is maintaining her weight, and VERY slowly gaining and ounce or two at a time, but she is growing in length well, and her head size is actual bigger than average. Although she has her struggles, I know she is very smart, she is very determined and motivated which I think is one of the best qualities to have, as she is always wanting to learn new things and already showing her own sense of independency. We did have a FISH genetic test done that came back normal, so still have a lot of things unanswered, but for now all that matters is that she is happy an healthy and I couldn't be more thankful for that. Thank you for the time to read a little about our story, I hope to hear more about all of you and wish you all the best. > > > > > > > Hi Gemini, > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > To: polymicrogyria > From: geminilove913@... > Date: Tue, 8 May 2012 03:24:29 +0000 > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2012 Report Share Posted May 13, 2012 Sounds wonderful that your daughter is doing so well. Keep working at it and try to be sure she learns as much sign language as possible so she will continue to be happy. If she can communicate, she won't get frustrated. One thing about seizures. My son's often came on during growth spirts. Glad to hear she isn't having problems with them. God Blesses us with these beautiful children to teach us to slow down and rejoice in the little things. ________________________________ To: polymicrogyria Sent: Sunday, May 13, 2012 5:09 PM Subject: Re: Hello everybody...  Thank you all for the uplifting replies. It is so nice to find others in similar situations as ours. Here is a little more of our story so far... My daughter, Layla Grace is going to be 2 next month. She is surprising us all every day. This time last year I was very concerned, the physical problems I knew we could get around but I was so worried about her mental development as I did not feel she understood the concept of anything, or anything we were saying, did not know the difference of a ball or baby doll. Over the past year her development has soared. This past month alone she has learned so many new things, and even the smallest and most simple things make me so excited. She walks, runs, dances, jumps, plays pretend with her kitchen and baby dolls. She takes very good care of her babies, she shares everything from her cookies to her sippy cup with everybody from family, her dolls, and even the pets. She does not talk yet, but she does understand everything we say and follows instruction very well. She is finally seeming to try to speak as she not working as hard to walk and learn the physical things now. Her only sounds before were " AHHHHHHHH " sounds, now her sounds are streaming together more like sentences and her babbles are sounding more like she is trying to get words out as she is learning to make different constanant sounds, It seems like she is saying DADA and trying to say Mama. She still gets choked pretty much on a daily basis and most of her food comes back out of her mouth as she does not have the strength and control of her mouth, throat and tongue muscles yet, but we are working on it. She can do pretty good with baby food mixed with cereal for thickness, she takes pediasure for the nutrition she misses from solids. We have therapy once, twice, somtimes three times a day, and then I continue to work with her all day on every little thing that would normally come naturally to other children. Of course I have my concerns, but I couldn't be happier with her progress. I know she is doing great, and will hopefully continue to do so. As for seizures, they are still a mystery to us. There were some things the doctors and I were worried may be seizures that turned out not be when we had the video EEG, they did not capture any actual seizures during the 4 day hospital stay, but they did say it showed A LOT of frequent spikes in brain activity that were potential seizure activity, and to always be prepared for them. So we still are not sure if she is having seizures or not, and will probably have another EEG done before long. She is maintaining her weight, and VERY slowly gaining and ounce or two at a time, but she is growing in length well, and her head size is actual bigger than average. Although she has her struggles, I know she is very smart, she is very determined and motivated which I think is one of the best qualities to have, as she is always wanting to learn new things and already showing her own sense of independency. We did have a FISH genetic test done that came back normal, so still have a lot of things unanswered, but for now all that matters is that she is happy an healthy and I couldn't be more thankful for that. Thank you for the time to read a little about our story, I hope to hear more about all of you and wish you all the best. > > > > > > > Hi Gemini, > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > To: polymicrogyria > From: geminilove913@... > Date: Tue, 8 May 2012 03:24:29 +0000 > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria From: dawnsfree58@... Date: Thu, 10 May 2012 18:20:18 -0700 Subject: Re: Hello everybody... That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing ________________________________ To: PMGGRoup <polymicrogyria > Sent: Tuesday, May 8, 2012 12:57 PM Subject: RE: Hello everybody... Hi Gemini, Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody... I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. ________________________________ To: PMGGRoup <polymicrogyria > Sent: Friday, May 18, 2012 7:36 PM Subject: RE: Hello everybody... Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria From: dawnsfree58@... Date: Thu, 10 May 2012 18:20:18 -0700 Subject: Re: Hello everybody... That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing ________________________________ To: PMGGRoup <polymicrogyria > Sent: Tuesday, May 8, 2012 12:57 PM Subject: RE: Hello everybody... Hi Gemini, Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody... I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. Diane Sent from Samsung Conquer™ 4G Dawn Hewes wrote: We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. ________________________________ To: PMGGRoup <polymicrogyria > Sent: Friday, May 18, 2012 7:36 PM Subject: RE: Hello everybody... Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria From: dawnsfree58@... Date: Thu, 10 May 2012 18:20:18 -0700 Subject: Re: Hello everybody...             That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing ________________________________ To: PMGGRoup <polymicrogyria > Sent: Tuesday, May 8, 2012 12:57 PM Subject: RE: Hello everybody...  Hi Gemini, Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria To: polymicrogyria From: geminilove913@... Date: Tue, 8 May 2012 03:24:29 +0000 Subject: Hello everybody...             I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have.                       Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 I'd like more information about PMG and types of seizures. I talked to our neurologist about the possibility of seizures during sleep because Elara is very restless at nighttime. She is all over the place in in crib, and sometimes wakes up screaming for no reason and is inconsolable. She does lots of flipping and flopping in her speech. Neuro told me that if she was having nighttime seizures that we would see a stagnation in her development or a regression. I told him that she was delayed and her development was very slow. He says that is ok, as long as it doesn't stop. I asked if we could to an EEG anyway and he said we can't do one unless we have more cause to have it done. > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > Diane > > Sent from Samsung Conquer™ 4G > > Dawn Hewes wrote: > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > ________________________________ > > To: PMGGRoup <polymicrogyria > > Sent: Friday, May 18, 2012 7:36 PM > Subject: RE: Hello everybody... > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > From: dawnsfree58@... > Date: Thu, 10 May 2012 18:20:18 -0700 > Subject: Re: Hello everybody... > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Tuesday, May 8, 2012 12:57 PM > > Subject: RE: Hello everybody... > > > > Hi Gemini, > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > To: polymicrogyria > > From: geminilove913@... > > Date: Tue, 8 May 2012 03:24:29 +0000 > > Subject: Hello everybody... > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 My daughter was in non convulsive status for 2 years before brain surgery. It's rare, for neuro typical kids but seems to happen with our PMG kids more often. It stopped my daughters social and emotional growth, and caused her IQ to fall. Sent from my iPhone > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > Diane > > Sent from Samsung Conquerâ„¢ 4G > > Dawn Hewes wrote: > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > ________________________________ > > To: PMGGRoup <polymicrogyria > > Sent: Friday, May 18, 2012 7:36 PM > Subject: RE: Hello everybody... > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > From: dawnsfree58@... > Date: Thu, 10 May 2012 18:20:18 -0700 > Subject: Re: Hello everybody... > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Tuesday, May 8, 2012 12:57 PM > > Subject: RE: Hello everybody... > > > > Hi Gemini, > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > To: polymicrogyria > > From: geminilove913@... > > Date: Tue, 8 May 2012 03:24:29 +0000 > > Subject: Hello everybody... > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 Diane, Thank you for your reply, that sounds just like my daughter. > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > > ________________________________ > > To: PMGGRoup <polymicrogyria > > Sent: Friday, May 18, 2012 7:36 PM > Subject: RE: Hello everybody... > > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > From: dawnsfree58@... > Date: Thu, 10 May 2012 18:20:18 -0700 > Subject: Re: Hello everybody... > >  > >   >    >    >    That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Tuesday, May 8, 2012 12:57 PM > > Subject: RE: Hello everybody... > >  > > Hi Gemini, > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > To: polymicrogyria > > From: geminilove913@... > > Date: Tue, 8 May 2012 03:24:29 +0000 > > Subject: Hello everybody... > >  > >   > >    > >    > >    I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > >   > >   > >   > >   > >  > >              > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2012 Report Share Posted May 18, 2012 Hi Tara, I can't believe your doctor would not order an EEG for Elara if it is already known the child has PMG. Although, have you considered it being night terrors? How old is your child? Are there any other symptoms of seizures? They can be completely unnoticeable or small things throughout the day such as brief stares even while continuing to do things. > > > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Friday, May 18, 2012 7:36 PM > > Subject: RE: Hello everybody... > > > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > > From: dawnsfree58@... > > Date: Thu, 10 May 2012 18:20:18 -0700 > > Subject: Re: Hello everybody... > > > > > > > > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > > > ________________________________ > > > > > > > > To: PMGGRoup <polymicrogyria > > > > > Sent: Tuesday, May 8, 2012 12:57 PM > > > > Subject: RE: Hello everybody... > > > > > > > > Hi Gemini, > > > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > > > To: polymicrogyria > > > > From: geminilove913@... > > > > Date: Tue, 8 May 2012 03:24:29 +0000 > > > > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2012 Report Share Posted May 19, 2012 You need to have a at least 24 hour or longer Video EEG. Their are treatments for our kids even the spiking. Maybe your title should in Canada who knows a good neuro for PMG. I have had terrible neuro support until we went to Detroit.Diane To: polymicrogyria From: geminilove913@... Date: Sat, 19 May 2012 05:43:12 +0000 Subject: Re: Hello everybody... Diane, Thank you for your reply, that sounds just like my daughter. > > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > Diane > > > Sent from Samsung Conquerâ„¢ 4G > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2012 Report Share Posted May 19, 2012 Push him harder or find a second opinion. Why would he want you to wait for more delay than now. Doctors just don't know enough about PMG although more are learning about how varied it from kid to kid. Sleep disturbance was my son's issue too. Doctor said some kids sleep, some don't. A neurologist who didn't know what he was dealing with. ________________________________ To: polymicrogyria Sent: Friday, May 18, 2012 10:34 PM Subject: Re: Hello everybody... I'd like more information about PMG and types of seizures. I talked to our neurologist about the possibility of seizures during sleep because Elara is very restless at nighttime. She is all over the place in in crib, and sometimes wakes up screaming for no reason and is inconsolable. She does lots of flipping and flopping in her speech. Neuro told me that if she was having nighttime seizures that we would see a stagnation in her development or a regression. I told him that she was delayed and her development was very slow. He says that is ok, as long as it doesn't stop. I asked if we could to an EEG anyway and he said we can't do one unless we have more cause to have it done. > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > Diane > > Sent from Samsung Conquer™ 4G > > Dawn Hewes wrote: > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > ________________________________ > > To: PMGGRoup <polymicrogyria > > Sent: Friday, May 18, 2012 7:36 PM > Subject: RE: Hello everybody... > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > From: dawnsfree58@... > Date: Thu, 10 May 2012 18:20:18 -0700 > Subject: Re: Hello everybody... > > > >  >   >   >   That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Tuesday, May 8, 2012 12:57 PM > > Subject: RE: Hello everybody... > > > > Hi Gemini, > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > To: polymicrogyria > > From: geminilove913@... > > Date: Tue, 8 May 2012 03:24:29 +0000 > > Subject: Hello everybody... > > > >  > >   > >   > >   I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > >  > >  > >  > >  > > > >             > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2012 Report Share Posted May 19, 2012 Mysha only had seizures while asleep for the first 10 years. She looke like she was sucking a bottle. Sent from my iPhone > Push him harder or find a second opinion. Why would he want you to wait for more delay than now. Doctors just don't know enough about PMG although more are learning about how varied it from kid to kid. Sleep disturbance was my son's issue too. Doctor said some kids sleep, some don't. A neurologist who didn't know what he was dealing with. > > ________________________________ > > To: polymicrogyria > Sent: Friday, May 18, 2012 10:34 PM > Subject: Re: Hello everybody... > > I'd like more information about PMG and types of seizures. I talked to our neurologist about the possibility of seizures during sleep because Elara is very restless at nighttime. She is all over the place in in crib, and sometimes wakes up screaming for no reason and is inconsolable. She does lots of flipping and flopping in her speech. Neuro told me that if she was having nighttime seizures that we would see a stagnation in her development or a regression. I told him that she was delayed and her development was very slow. He says that is ok, as long as it doesn't stop. I asked if we could to an EEG anyway and he said we can't do one unless we have more cause to have it done. > > > > > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > > Diane > > > > Sent from Samsung Conquerâ„¢ 4G > > > > Dawn Hewes wrote: > > > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Friday, May 18, 2012 7:36 PM > > Subject: RE: Hello everybody... > > > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > > From: dawnsfree58@... > > Date: Thu, 10 May 2012 18:20:18 -0700 > > Subject: Re: Hello everybody... > > > > > > > > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > > > ________________________________ > > > > > > > > To: PMGGRoup <polymicrogyria > > > > > Sent: Tuesday, May 8, 2012 12:57 PM > > > > Subject: RE: Hello everybody... > > > > > > > > Hi Gemini, > > > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > > > To: polymicrogyria > > > > From: geminilove913@... > > > > Date: Tue, 8 May 2012 03:24:29 +0000 > > > > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2012 Report Share Posted May 20, 2012 My son, , did the sucking thing while sleeping too. Definately has something to do with brain activity. ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Saturday, May 19, 2012 7:59 PM Subject: Re: Hello everybody...  Mysha only had seizures while asleep for the first 10 years. She looke like she was sucking a bottle. Sent from my iPhone > Push him harder or find a second opinion. Why would he want you to wait for more delay than now. Doctors just don't know enough about PMG although more are learning about how varied it from kid to kid. Sleep disturbance was my son's issue too. Doctor said some kids sleep, some don't. A neurologist who didn't know what he was dealing with. > > ________________________________ > > To: polymicrogyria > Sent: Friday, May 18, 2012 10:34 PM > Subject: Re: Hello everybody... > > I'd like more information about PMG and types of seizures. I talked to our neurologist about the possibility of seizures during sleep because Elara is very restless at nighttime. She is all over the place in in crib, and sometimes wakes up screaming for no reason and is inconsolable. She does lots of flipping and flopping in her speech. Neuro told me that if she was having nighttime seizures that we would see a stagnation in her development or a regression. I told him that she was delayed and her development was very slow. He says that is ok, as long as it doesn't stop. I asked if we could to an EEG anyway and he said we can't do one unless we have more cause to have it done. > > > > > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > > Diane > > > > Sent from Samsung Conquer™ 4G > > > > Dawn Hewes wrote: > > > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > > > ________________________________ > > > > To: PMGGRoup <polymicrogyria > > > Sent: Friday, May 18, 2012 7:36 PM > > Subject: RE: Hello everybody... > > > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > > From: dawnsfree58@... > > Date: Thu, 10 May 2012 18:20:18 -0700 > > Subject: Re: Hello everybody... > > > > > > > > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > > > ________________________________ > > > > > > > > To: PMGGRoup <polymicrogyria > > > > > Sent: Tuesday, May 8, 2012 12:57 PM > > > > Subject: RE: Hello everybody... > > > > > > > > Hi Gemini, > > > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > > > To: polymicrogyria > > > > From: geminilove913@... > > > > Date: Tue, 8 May 2012 03:24:29 +0000 > > > > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2012 Report Share Posted May 20, 2012 That was her seizure type. It was an actual seizure. It eventually became full blown convulsions - that was how it was figured out. Sent from my iPhone > My son, , did the sucking thing while sleeping too. Definately has something to do with brain activity. > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Saturday, May 19, 2012 7:59 PM > Subject: Re: Hello everybody... > > > > > Mysha only had seizures while asleep for the first 10 years. She looke like she was sucking a bottle. > > Sent from my iPhone > > > > > Push him harder or find a second opinion. Why would he want you to wait for more delay than now. Doctors just don't know enough about PMG although more are learning about how varied it from kid to kid. Sleep disturbance was my son's issue too. Doctor said some kids sleep, some don't. A neurologist who didn't know what he was dealing with. > > > > ________________________________ > > > > To: polymicrogyria > > Sent: Friday, May 18, 2012 10:34 PM > > Subject: Re: Hello everybody... > > > > I'd like more information about PMG and types of seizures. I talked to our neurologist about the possibility of seizures during sleep because Elara is very restless at nighttime. She is all over the place in in crib, and sometimes wakes up screaming for no reason and is inconsolable. She does lots of flipping and flopping in her speech. Neuro told me that if she was having nighttime seizures that we would see a stagnation in her development or a regression. I told him that she was delayed and her development was very slow. He says that is ok, as long as it doesn't stop. I asked if we could to an EEG anyway and he said we can't do one unless we have more cause to have it done. > > > > > > > > > Our kids can have non convulsive status, ESES during sleep and any kind of seizures can cause issues with speech and behavior. My daughter gets lots of spiking and then has trouble with expressive speech, distracted and heightened emotions. Just an FYI. > > > Diane > > > > > > Sent from Samsung Conquerâ„¢ 4G > > > > > > Dawn Hewes wrote: > > > > > > We had issues with transitioning from home to school to therapy etc. A low dose of prozac calmed things down enough so we could explain what is going to happen next instead of a meltdown on his part. > > > Focal seizures also can cut into how much your child is absorbing when you speak. God Bless our Kids. We need patience and they do too. > > > > > > ________________________________ > > > > > > To: PMGGRoup <polymicrogyria > > > > Sent: Friday, May 18, 2012 7:36 PM > > > Subject: RE: Hello everybody... > > > > > > Yes, we are blessed, for sure, she`s doing good... but speech is not the only thing missing, she has a delay, as all of our kids, and she`s understanding she`s different, other kids don`t like to play with her, and so on... it`s been a hard way, till now, mood issues, swaling, crying for hours, and we don`t kown what`s going on, if any pain or where and, sometimes I think some little seizures, not clearly seen.... but we are blessed! As to communication devices, there`s a little problem, have not yet found one, all of them speak English, not Portuguese, as we do. We have been in touch with Proloquo, they intend to have it in Portuguese, but not yet... we are waiting for! If someone knows anything about, please post! Tks. To: polymicrogyria > > > From: dawnsfree58@... > > > Date: Thu, 10 May 2012 18:20:18 -0700 > > > Subject: Re: Hello everybody... > > > > > > > > > > > > > > > > > > > > > That's wonderful. Speech is great but if it is the only thing lacking, then you are blessed. Communication devices are out there for the choosing > > > > > > ________________________________ > > > > > > > > > > > > To: PMGGRoup <polymicrogyria > > > > > > > Sent: Tuesday, May 8, 2012 12:57 PM > > > > > > Subject: RE: Hello everybody... > > > > > > > > > > > > Hi Gemini, > > > > > > Just to say you to keep your face in God, it`s not an easy root, but our beloved kids sometimes surprise us a lot. > > > > > > My 6 yrs grandaughter was diagnosited with Pachygyra and Lissencephaly here in Brazil and, afterwords, with PMG in the USA. We were tolkd she would never walk or talk. However, she`s doing very good, she walks, runs, dances and goes to school everyday. She eats very well and, as far (knock the wood), no seizures. She doesn`t talk as yet, but she can say some words, mom, dad, grandmom (here it`s vo, easier to say) and some few other. She understands everything we say and has improved a lot with her mood. She can express herself by her own sign signals. I believe she`s a happy girl, and I love her more than everything in the world. She`s my God`s gift!She has no medicins, just alternative treatment, as Frequencies of Brilliance and Chi Kun, homeopathy and orthomolecular, among lots of others. Be confident and love your daughter as much you can, it`s her best treatment. A hug.maria > > > > > > To: polymicrogyria > > > > > > From: geminilove913@... > > > > > > Date: Tue, 8 May 2012 03:24:29 +0000 > > > > > > Subject: Hello everybody... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I just wanted to introduce myself as I am new to the group. My sweet little baby girl has been recently diagnosed with Lissencephaly and Polymicrogyria. Needless to say I have been worried and scared to death after finding out what those words meant for my daughter. Though I refuse to put her in a bubble, she is beating the odds everyday. Through all of the information and stories I have read, I have not heard or seen any other case where somebody has had both Lissencephaly and Polymicrogyria so I thought I would ask you guys. Anyone here have a diagnosis like this or heard of one? Also any other info or stories you would like to share with me I'm nothing but open ears. I look forward to getting to know you and your precious angels and I am so thankful to have found all the support that I have. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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