Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Depending on the location of the PMG your child will have different outward physical manifestations (i.e. our daughter had/has delayed motor skills but her PMG is on the right side of the brain so her left side if most affected.) Our daughter had this prior to having any evidence of seizure (we had late onset seizures at 7 years of age.) Early Childhood Intervention and PT/OT can help a lot with developing your child to her full potential. > > Hi, this is Lina. I have a 7 months old daughter who was diagnosed > with PMG she was born with seizures disorder and taking medications to > control it. Keppra and Tegritol, the seizures are partly controlled > but still happening every once and a while I don't know why. Her > development in normal to her age but I feel that she is not strong > enough and she is not holding herself as most babies on her age. Could > this be related to the medications or the PMG itself? > > Best Regards, > Lina Kurdi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 Lina, Sorry it took a bit to get back to you. He is in a preschool program that is a combination class with children needing therapies and some not. He is doing well and very much enjoys going. He recieves PT, OT, speech/ language, vision and special education while he is there (we also go to private therapies outside of school). If you are asking how he does cognitively, it is a bit hard to fully explain. It is becoming apparent that he has some difficulties with learning. He is 4 and is unable to identify colors/ shapes, tell you how old he is and so on. When I say it is hard to explain, I mean that there are some things that I don't feel he is too far behind for his age, but is like a 2 year old in other areas. > > > Subject: (unknown) > To: " polymicrogyria " <polymicrogyria > > Date: Wednesday, June 1, 2011, 8:33 AM > > > > Hi, this is Lina. I have a 7 months old daughter who was diagnosed with PMG she was born with seizures disorder and taking medications to control it. Keppra and Tegritol, the seizures are partly controlled but still happening every once and a while I don't know why. Her development in normal to her age but I feel that she is not strong enough and she is not holding herself as most babies on her age. Could this be related to the medications or the PMG itself? > > Best Regards, > Lina Kurdi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Hi Deb My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. Sorry I couldn't offer much more advice, but just wanted you to know we are here  Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. Good luck to you and your family. Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Thursday, 1 September 2011 2:53 PM Subject: (unknown)  My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. My daughter has been coping well, she is doing a wonderful job. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Hello everyone, My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! Best Regards, Lina Kurdi > Hi Deb > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > Good luck to you and your family. > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 2:53 PM > Subject: (unknown) > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > My daughter has been coping well, she is doing a wonderful job. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 If anybody tried it kindly advice me where is the best place/ country to do it. Am from Jeddah, Saudi Arabia. Best Regards, Lina Kurdi Mother of beautiful baby Lana > Hello everyone, > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > Best Regards, > Lina Kurdi > > > > > Hi Deb > > > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > > > Good luck to you and your family. > > Kat > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Sent: Thursday, 1 September 2011 2:53 PM > > Subject: (unknown) > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 HI Lina, I am not a doctor but I would be very wary of so many medications for such a little person! There are good specialists here in the US, could you come here, by any chance? Dr. Dobyns in Seattle, and Dr. Devinsky at NYU in New York City are two good specialists in polymicrogyria and seizures. In general, the medications Vigabitrin and ACTH are used for infantile spasm. Is that the kind of seizure your daughter is having? Surgery seems like a last option, to me, given Lana's age, but that is just my opinion. I am sorry for your stress and worry, and sure all of us on this list serve can really understand! Good luck! Thea (unknown) > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > My daughter has been coping well, she is doing a wonderful job. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 I am currently looking into surgery at Cleveland Clinic Dr. Bingaman. He has a very good reputation. You can do a review not in person for 700$. The area causing the seizures has to be consistent or focal in different testing. My neurologist said that it is much better if done before the age of 4. Diane CC: polymicrogyria To: polymicrogyria From: sweet.kurdi@... Date: Thu, 1 Sep 2011 13:02:35 +0300 Subject: Re: (unknown) Hello everyone, My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! Best Regards, Lina Kurdi > Hi Deb > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > Good luck to you and your family. > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 2:53 PM > Subject: (unknown) > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > My daughter has been coping well, she is doing a wonderful job. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharing. You can also search the archives. This is the list serve: http://www.hemikids.org/ I am sure their are several parents from Australia. CHASA is also trying to get lists of local support of special needs kids to share local resources. I have a local group that is very helpful too for learning good therapy and doctors. Several of the kids on this hemi.org list serve is PMG kids also called cerebral dysplasia or static brain lesion. DianeTo: polymicrogyria From: deb_hedley@... Date: Wed, 31 Aug 2011 19:53:28 -0700 Subject: (unknown) My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. My daughter has been coping well, she is doing a wonderful job. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Diane Very helpful email. Alison Sent from my iPhone > > Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharing. You can also search the archives. This is the list serve: > http://www.hemikids.org/ I am sure their are several parents from Australia. CHASA is also trying to get lists of local support of special needs kids to share local resources. I have a local group that is very helpful too for learning good therapy and doctors. Several of the kids on this hemi.org list serve is PMG kids also called cerebral dysplasia or static brain lesion. > DianeTo: polymicrogyria > From: deb_hedley@... > Date: Wed, 31 Aug 2011 19:53:28 -0700 > Subject: (unknown) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 I second, The Brain Changes Itself, such a Great book! Sent from my iPad Diane Very helpful email. Alison Sent from my iPhone > > Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharing. You can also search the archives. This is the list serve: > http://www.hemikids.org/ I am sure their are several parents from Australia. CHASA is also trying to get lists of local support of special needs kids to share local resources. I have a local group that is very helpful too for learning good therapy and doctors. Several of the kids on this hemi.org list serve is PMG kids also called cerebral dysplasia or static brain lesion. > DianeTo: polymicrogyria > From: deb_hedley@... > Date: Wed, 31 Aug 2011 19:53:28 -0700 > Subject: (unknown) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Alison, I had difficulty getting services for PMG but once everything said left hemi cp thanks to the physiatrist I got help so much easier. Therapist suddenly know what my daughter will needed. It just gives them the picture easier. I am not sure that it is too different than a stroke either. Diane Re: (unknown) I second, The Brain Changes Itself, such a Great book! Sent from my iPad Diane Very helpful email. Alison Sent from my iPhone > > Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 I was told PMG was the finding on the MRI , for the diagnosis is RH CP. Anytime I am asked what the diagnosis is I say CP if they say why.. Then I tell them. Sent from my iPhone > Alison, > I had difficulty getting services for PMG but once everything said left hemi cp thanks to the physiatrist I got help so much easier. Therapist suddenly know what my daughter will needed. It just gives them the picture easier. I am not sure that it is too different than a stroke either. > > Diane > Re: (unknown) > > I second, The Brain Changes Itself, such a Great book! > > Sent from my iPad > > > > Diane > Very helpful email. > Alison > > Sent from my iPhone > > > >> >> Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharin > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 Diane My daughter had surgery with Dr. Bingaman 3 weeks ago. If you'd like to get in touch with me send me a message. Sent from my iPhone > > I am currently looking into surgery at Cleveland Clinic Dr. Bingaman. He has a very good reputation. You can do a review not in person for 700$. The area causing the seizures has to be consistent or focal in different testing. My neurologist said that it is much better if done before the age of 4. > Diane > CC: polymicrogyria > To: polymicrogyria > From: sweet.kurdi@... > Date: Thu, 1 Sep 2011 13:02:35 +0300 > Subject: Re: (unknown) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello everyone, > > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > > > Best Regards, > > Lina Kurdi > > > > > > > >> Hi Deb > >> > >> My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > >> > >> My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > >> > >> we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > >> > >> My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > >> > >> Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > >> > >> Good luck to you and your family. > >> Kat > >> > >> ________________________________ > >> > >> To: " polymicrogyria " <polymicrogyria > > >> Sent: Thursday, 1 September 2011 2:53 PM > >> Subject: (unknown) > >> > >> > >> > >> My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > >> My daughter has been coping well, she is doing a wonderful job. > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2011 Report Share Posted September 1, 2011 I heard of it and I really want to read it but cannot find it here, it gives hope as I think. Right? Best Regards, Lina Kurdi > I second, The Brain Changes Itself, such a Great book! > > Sent from my iPad > > > > Diane > Very helpful email. > Alison > > Sent from my iPhone > > > > > > > Deb, It sounds like your daughter is doing a good job it is difficult to move from grief to helping our children. I want to tell you about a book that talks about neuroplasticy is was very helpful to me The Brain that Changes Itself. It is a good concepts to be aware of when helping rehab and the importance of early muscle training and awareness . The second thing that has helped me so much is when one side has weak or tight muscles it is called hemiparesis since the right side of the brain is damaged it is left hemiparesis cerebral palsy. Their is an international group by CHASA Children with Hemi and Stroke Association http://www.chasa.org/. They have an active list serve 20 emails a day of 17000 parents asking question and sharing. You can also search the archives. This is the list serve: > > http://www.hemikids.org/ I am sure their are several parents from Australia. CHASA is also trying to get lists of local support of special needs kids to share local resources. I have a local group that is very helpful too for learning good therapy and doctors. Several of the kids on this hemi.org list serve is PMG kids also called cerebral dysplasia or static brain lesion. > > DianeTo: polymicrogyria > > From: deb_hedley@... > > Date: Wed, 31 Aug 2011 19:53:28 -0700 > > Subject: (unknown) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > > > My daughter has been coping well, she is doing a wonderful job. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 have they tried the ACTH medication for her seizures? We used this for our girl and shes been seizure free for 3mths so far. They said they will come back but will be different types, we are hoping we get some more time yet. cheers Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Cc: " polymicrogyria " <polymicrogyria > Sent: Thursday, 1 September 2011 10:02 PM Subject: Re: (unknown) Â Hello everyone, My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! Best Regards, Lina Kurdi > Hi Deb > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > Good luck to you and your family. > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 2:53 PM > Subject: (unknown) > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > My daughter has been coping well, she is doing a wonderful job. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 What do u mean by ACTH med?? Best Regards, Lina Kurdi > have they tried the ACTH medication for her seizures? We used this for our girl and shes been seizure free for 3mths so far. They said they will come back but will be different types, we are hoping we get some more time yet. > > cheers > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Cc: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 10:02 PM > Subject: Re: (unknown) > > > Hello everyone, > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > Best Regards, > Lina Kurdi > > > > > Hi Deb > > > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > > > Good luck to you and your family. > > Kat > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Sent: Thursday, 1 September 2011 2:53 PM > > Subject: (unknown) > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 She is now taking 5 med. Tegritol Keppra Lorazebam Dopakin Lamactel Not sure about the spelling of the med. Hope we can control them and as I told you that am still in the hospital readjusting the medications for her. Pray for my baby. Best Regards, Lina > have they tried the ACTH medication for her seizures? We used this for our girl and shes been seizure free for 3mths so far. They said they will come back but will be different types, we are hoping we get some more time yet. > > cheers > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Cc: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 10:02 PM > Subject: Re: (unknown) > > > Hello everyone, > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > Best Regards, > Lina Kurdi > > > > > Hi Deb > > > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > > > Good luck to you and your family. > > Kat > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Sent: Thursday, 1 September 2011 2:53 PM > > Subject: (unknown) > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Surgery is an option as one of the doctors suggested but I am so afraid of the side effects of such surgeries! And about the kind of sz s that Lana is having, I don't know exactly what does they called but lately they became more often occur, like clusters 4-5 times daily, but with the new medications hope it gets better. Lina > What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. > Diane > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it please get in touch with me. I have pictures of my daughters progress as well. Sent from my iPhone > Surgery is an option as one of the doctors suggested but I am so afraid of the side effects of such surgeries! > > And about the kind of sz s that Lana is having, I don't know exactly what does they called but lately they became more often occur, like clusters 4-5 times daily, but with the new medications hope it gets better. > > Lina > > > > > What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. > > Diane > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Hi If it's ok to jump on the the message thread i'd be interested to know what you've been through with regard to surgery. I also really pleased to hear it's gone well :-) My daughter Jenna is now 11months. We started a surgery assessment in March and have so far has another MRI and video EEG. We're going to Alder Hey for a 3T scan in a few weeks and the possibly GOSH for a Grid scan. Although the surgery would be done in Leeds Jenna's notes are with a consultant in Paris for a second opinion. When we've completed all the tests i'll be sitting down with the neurologists/surgeons. Do you have any suggestions on what i should be asking and prepared for. I hope this isn't asking too much. Thank you Katy (and Jenna)x > > > > > What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. > > > Diane > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Hi , How is her development milestone goes? I mean how was it before the surgery and after? How old is she? Best Regards, Lina Kurdi > We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it please get in touch with me. I have pictures of my daughters progress as well. > > > > Sent from my iPhone > > > > > Surgery is an option as one of the doctors suggested but I am so afraid of the side effects of such surgeries! > > > > And about the kind of sz s that Lana is having, I don't know exactly what does they called but lately they became more often occur, like clusters 4-5 times daily, but with the new medications hope it gets better. > > > > Lina > > > > > > > > > What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. > > > Diane > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 Sorry, ACTH is a hormone treatment, similar to steriods that can also be used for seizures. We also tried Prednisone which they can only take for 3mths, but our girl was seizure free whilst on this course of treatment, but because it can only be taken for 3mths someone on here suggested the ACTH treatment which we then got done via the neuro team at our hospital with success so far.... it is only used for infantile spasms, so it will depend what type of seizures your child is having. Our girl was having clusters of spasms up to 12 times a day and was also on 5 meds. She is now only on 2 to maintain her. The doc has said she will probably develop some partial complex seizures later on but at least for now she is getting some seizure free time to develop. She is a different kid without seizures, smiling again and her personality is really shining through. Starting to get stronger and we hope she will learn to hold her head up soon. I hope you have good support where you are. Stay strong. Cheers Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Friday, 2 September 2011 6:42 PM Subject: Re: (unknown) Â What do u mean by ACTH med?? Best Regards, Lina Kurdi > have they tried the ACTH medication for her seizures? We used this for our girl and shes been seizure free for 3mths so far. They said they will come back but will be different types, we are hoping we get some more time yet. > > cheers > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Cc: " polymicrogyria " <polymicrogyria > > Sent: Thursday, 1 September 2011 10:02 PM > Subject: Re: (unknown) > > > Hello everyone, > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > Best Regards, > Lina Kurdi > > > > > Hi Deb > > > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > > > Good luck to you and your family. > > Kat > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Sent: Thursday, 1 September 2011 2:53 PM > > Subject: (unknown) > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > My daughter has been coping well, she is doing a wonderful job. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2011 Report Share Posted September 2, 2011 I'll post the entire thing once we are farther along. But, here is the summary - Mysha is 14 years old. Her PMG affected about 80% of her left hemisphere. She had weakness on her right side, but otherwise there were no affects. Seizure started at 18 months, then went away. She was off meds from 3-5 years. She seized again, but was fairly stable on a single drug. At 8 she had Keppra added (ugh!). In December of 2009 he had an EEG that revealed she was in subclinical status. Always. No matter what they did. Then her IQ dropped 20 points in one year. We tried drug after drug - some would work for a month, but the status would come back and her actual convulsions got worse. We took her to Cleveland Clinic, main campus where Dr. Wyllie (wow!!) said surgery was an option, but it was our choice. No pressure. She presented everything - and she talked TO my daughter. We met Dr. Bingaman (double WOW) and my daughter said she wanted the surgery. On August 11 he performed a functional hemisphereectomy (sp??) and removed about 65% of the left hemisphere. There was no PMG on the right - and no seizure activity. It was the hardest thing I've ever done (if you want to hear the entire story of the day of surgery send me a note). Following surgery she raised her right leg and responded to commands as soon as they brought her around. It tool an hour for her to speak. 24 hours after surgery she spoke her first sentence. Today she came home. She's walking slowly, but without any aid, and her arm is weaker. He also has a slight droop on her right mouth and a blind spot in her periphreal (cant spell!) vision (expected!) There may be some memory issues, but we are watchig and waiting (22 days.....). She spent 4 days in PICU, 6 days on a unit and 11 days in rehab getting PT, OT and speech. Before surgery we ha numerous MRI and CT scans. A functional MRI and a WADA test. We, of course, had numerous video EEGs and regular EEGs. There was also a visual field exam We did not do implants because the team felt it wasn't necessary. Cleveland Clinic, Dr. Wyllie and Dr. Lashwanee (sp? The other epileptologist) and Dr. Bingaman were amazing. The child life people were great, and the care was great. If there are any more questions please ask. Oh, wait, the big one. No seizures. None. And, following surgery I got worried and they did a 24 hour EEG - there was NO seizure activity. Cleveland Clinic is NOT doing these surgeries to make a name - they do 6-7 a MONTH. They don't do surgery if they aren't pretty confident they can help, and there is no pressure. Sent from my iPhone > Hi , > > How is her development milestone goes? I mean how was it before the surgery and after? How old is she? > > Best Regards, > Lina Kurdi > > > > > We are 3 weeks out of a hemisphere removal. If anyone wants to hear about it please get in touch with me. I have pictures of my daughters progress as well. > > > > > > > > Sent from my iPhone > > > > > > > > > Surgery is an option as one of the doctors suggested but I am so afraid of the side effects of such surgeries! > > > > > > And about the kind of sz s that Lana is having, I don't know exactly what does they called but lately they became more often occur, like clusters 4-5 times daily, but with the new medications hope it gets better. > > > > > > Lina > > > > > > > > > > > > > What kind of seizure are they on the EEG? How often does she have them? How long do they last? ACTH they use for infantile spasms. I am certain Dr Dobyns would suggest surgery. He did to us and we only had a few and one med. I think with some PMG lesions they are more likely to cause seizures and easier to do surgery. > > > > Diane > > > > > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2011 Report Share Posted September 3, 2011 My girl is also having clusters 6-7 times daily and she stopped development two months ago although she was developing well when she wad seizures free for three months. But now she is deferent kid, only concentrating on controlling seizures that she keeps having every day. Hope everything will be fine soon. Take care, Lina > Sorry, ACTH is a hormone treatment, similar to steriods that can also be used for seizures. We also tried Prednisone which they can only take for 3mths, but our girl was seizure free whilst on this course of treatment, but because it can only be taken for 3mths someone on here suggested the ACTH treatment which we then got done via the neuro team at our hospital with success so far.... it is only used for infantile spasms, so it will depend what type of seizures your child is having. > > Our girl was having clusters of spasms up to 12 times a day and was also on 5 meds. She is now only on 2 to maintain her. The doc has said she will probably develop some partial complex seizures later on but at least for now she is getting some seizure free time to develop. She is a different kid without seizures, smiling again and her personality is really shining through. Starting to get stronger and we hope she will learn to hold her head up soon. > > I hope you have good support where you are. Stay strong. > > Cheers > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Friday, 2 September 2011 6:42 PM > Subject: Re: (unknown) > > > What do u mean by ACTH med?? > > Best Regards, > Lina Kurdi > > > > > have they tried the ACTH medication for her seizures? We used this for our girl and shes been seizure free for 3mths so far. They said they will come back but will be different types, we are hoping we get some more time yet. > > > > cheers > > Kat > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Cc: " polymicrogyria " <polymicrogyria > > > Sent: Thursday, 1 September 2011 10:02 PM > > Subject: Re: (unknown) > > > > > > Hello everyone, > > My daughter was diagnosed with right side of the brain PMG, we discovered this when she was only 2 weeks of age. She had seizures on z first 24 hours when she was born, she was taking two medic. And we lived happily with no seizures for 3 months after that everything changed seizures became more aggressive and for at least 15 times per day. > > Now she is taking five med. and she still having seizures, am writing this while I am n z hospital and so frustrated and don't know what is the next step!! The doctor is suggesting surgery to remove the affected part of the brain. Have anyone tried such a surgery?? Kindly advice! > > > > Best Regards, > > Lina Kurdi > > > > > > > > > Hi Deb > > > > > > My name is Kat and I'm from NZ so probably alot closer than most of us on here. I was so happy to come across this website and to know there are others out there. > > > > > > My girl is 1 year old next week and we found out at 11wks she has left sided PMG, she developed seizures an at early age.. We have had the ACTH treatment for them and have been lucky enough to be seizure free for 3mths now. During this time we have been working on her development, she also does not hold her head up or sit up yet either. But it sounds like you and your daughter are doing the right things for your girl, therapy and lots exercises, stretching and stimulation overall is the key, and getting the support from the professionals you need. > > > > > > we are lucky here to have a play centre that focus's on children that need extra help, the therapist works with our girl weekly one on one and gives us exercises to work on at home. We also used finger splits for a few months and now she does not need them. > > > > > > My advice to you is keep doing what you are doing, lots of love, time and therapy is what gets our kids through. > > > > > > Sorry I couldn't offer much more advice, but just wanted you to know we are here Some of the ladies on her have good ideas about therapy as they have older children so may be able to offer some better ideas. > > > > > > Good luck to you and your family. > > > Kat > > > > > > ________________________________ > > > > > > To: " polymicrogyria " <polymicrogyria > > > > Sent: Thursday, 1 September 2011 2:53 PM > > > Subject: (unknown) > > > > > > > > > > > > My name is Deb and I live in Melbourne, Australia. My grandson was diagnosed with unilateral polymicrogyria the day before his first birthday. My daughter and i knew something was up at around 6 weeks of age, because he was born at 33weeks they kept telling us it was because he was premature that he was behind in most milestones. He had his mri on 1/8/11 and we got the diagnosis 10 days later. He cannot sit up by himself, his left arm & leg are floppy hence the unilateral diagnosis, basically his left brain is normal and we are currently attending physiotherapy, occupational therapy, speech therapy. He was fitted yesterday for a handsplint to wear at night to stop his hand and fingers contracting so that he wont need botox for a while. There are no support groups that we can find in Australia, we have only one specialist so cannot even get second opinion on treatment. Is anyone doing anything different?? I just want the best for my grandson. > > > My daughter has been coping well, she is doing a wonderful job. > > > > > > Quote Link to comment Share on other sites More sharing options...
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