Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Melody, Welcome! My daughter at 17 months was diagnosed originally with Pachygyria then it was changed to Polymicrogyria (PMG) and back again finally to Pachygyria! She is very high functioning and we belong to both the Lissencephaly Loop as well as the PMG loop. will be 4 yrs old on Mar. 28th and overall functions with a 1 year delay. She attends UCP 5 full days a week and they are WONDERFUL!!! I would love to hear more about your son. Yourth Wife to Lenny, NYC Firefighter Mommy to Elissa (6), LJ (5), (Almost 4), and (18 months) is our Liss Kid. She can walk, run, and even slow down and turn as well as stop. She can also hop, knows her ABC's, can count to 20 and feeds herself about as neatly as the lionesses on National Geographic. has Pachygyria involving more than 50% of her brain, microcephaly, hypertonia, hypotonia, mild cerebral palsy in her legs and has no seizures. Our AIM/YAHOO screen name is Yourthclan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Melody, Welcome! My daughter at 17 months was diagnosed originally with Pachygyria then it was changed to Polymicrogyria (PMG) and back again finally to Pachygyria! She is very high functioning and we belong to both the Lissencephaly Loop as well as the PMG loop. will be 4 yrs old on Mar. 28th and overall functions with a 1 year delay. She attends UCP 5 full days a week and they are WONDERFUL!!! I would love to hear more about your son. Yourth Wife to Lenny, NYC Firefighter Mommy to Elissa (6), LJ (5), (Almost 4), and (18 months) is our Liss Kid. She can walk, run, and even slow down and turn as well as stop. She can also hop, knows her ABC's, can count to 20 and feeds herself about as neatly as the lionesses on National Geographic. has Pachygyria involving more than 50% of her brain, microcephaly, hypertonia, hypotonia, mild cerebral palsy in her legs and has no seizures. Our AIM/YAHOO screen name is Yourthclan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Melody, Welcome! My daughter at 17 months was diagnosed originally with Pachygyria then it was changed to Polymicrogyria (PMG) and back again finally to Pachygyria! She is very high functioning and we belong to both the Lissencephaly Loop as well as the PMG loop. will be 4 yrs old on Mar. 28th and overall functions with a 1 year delay. She attends UCP 5 full days a week and they are WONDERFUL!!! I would love to hear more about your son. Yourth Wife to Lenny, NYC Firefighter Mommy to Elissa (6), LJ (5), (Almost 4), and (18 months) is our Liss Kid. She can walk, run, and even slow down and turn as well as stop. She can also hop, knows her ABC's, can count to 20 and feeds herself about as neatly as the lionesses on National Geographic. has Pachygyria involving more than 50% of her brain, microcephaly, hypertonia, hypotonia, mild cerebral palsy in her legs and has no seizures. Our AIM/YAHOO screen name is Yourthclan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Melody, Hey!! I read your post and most of the time if I don't have a really pertinent question to pose to the group, I just lurk A LOT. But your post caught my attention. Your son, when is his birthday? My son, Caylob is 16 months also. I would love to hear about your angel and tell you a little about mine. Since it appears that they are the same age, it may benefit both of us. Now Caylob was diagnosed with Lissencephaly when he was 3 months. Then we got the chance of a lifetime to go to the conference in July of 2001 in Indiana and he got to see Dr. Dobyns. Have you been in contact with him yet? Anyway he was then PROPERLY diagnosed with PMG and that was at 8 months old. You will see that even though all of our angels here have primarily the same diagnosis, all of them are completely different in their development, progress, seizure activity, etc. I think that you will be extremely happy that you found our group. There are some wonderful people here and a lot of times you can really get some good advice or experiences here Like I said once before, I would love to hear more about your son, too. Where do you live? Feel free to e-mail me _22792@... Nichole , mommy to Caylob, 14 months, PMg, shunt, G-tube, with a new sis named Kamrynn, and has the biggest blue eyes and the most beautiful blonde curls ever!!!! _22792@... New Member - Melody Hello! Yes, my 16mth old son was just diagnosed with polymicrogyria and I was just trying to find a little information out about it and I stumbled across this group. Thank you. Melody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hello. My sons (Keegan) birthday is November 9. Keegan is definitely an angel. He was just diagnosed with pmg but he also has schizencephaly. The genetics doctor knows Dr. Dobbins so he is going to try and have him look at his records. We got diagnosed with schizencephaly at one year and it just seems like they keep coming up with more and more. The poor baby has seen more doctors in the past couple of months of his life than I have my whole life. This has been really hard on me but I keep on ticking but it just seems like noone knows anything and as you know I'm sure that is frustrating. He had his first seizures the other day and it just broke my heart because I was kinda hoping that would be one thing he wouldn't have to deal with. Well I could babble on forever about this, but tell me about your son I would love to hear about him.By the way We live in Minnesota. Where do y'all live and any information you have I would really appreciate. Thanks for writing me hope to hear from you soon. Melody --- Doug wrote: > Melody, > Hey!! I read your post and most of the time if I > don't have a really > pertinent question to pose to the group, I just lurk > A LOT. But your > post caught my attention. Your son, when is his > birthday? My son, > Caylob is 16 months also. I would love to hear > about your angel and > tell you a little about mine. Since it appears that > they are the same > age, it may benefit both of us. > Now Caylob was diagnosed with Lissencephaly when he > was 3 months. Then > we got the chance of a lifetime to go to the > conference in July of 2001 > in Indiana and he got to see Dr. Dobyns. Have you > been in contact with > him yet? Anyway he was then PROPERLY diagnosed with > PMG and that was at > 8 months old. > You will see that even though all of our angels here > have primarily the > same diagnosis, all of them are completely different > in their > development, progress, seizure activity, etc. > I think that you will be extremely happy that you > found our group. > There are some wonderful people here and a lot of > times you can really > get some good advice or experiences here > Like I said once before, I would love to hear more > about your son, too. > Where do you live? > Feel free to e-mail me > _22792@... > > > Nichole , mommy to Caylob, 14 months, PMg, > shunt, G-tube, with a > new sis named Kamrynn, and has the biggest blue eyes > and the most > beautiful blonde curls ever!!!! > _22792@... > > New Member - Melody > > Hello! Yes, my 16mth old son was just diagnosed with > polymicrogyria and I was just trying to find a > little > information out about it and I stumbled across this > group. Thank you. Melody > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hello. My sons (Keegan) birthday is November 9. Keegan is definitely an angel. He was just diagnosed with pmg but he also has schizencephaly. The genetics doctor knows Dr. Dobbins so he is going to try and have him look at his records. We got diagnosed with schizencephaly at one year and it just seems like they keep coming up with more and more. The poor baby has seen more doctors in the past couple of months of his life than I have my whole life. This has been really hard on me but I keep on ticking but it just seems like noone knows anything and as you know I'm sure that is frustrating. He had his first seizures the other day and it just broke my heart because I was kinda hoping that would be one thing he wouldn't have to deal with. Well I could babble on forever about this, but tell me about your son I would love to hear about him.By the way We live in Minnesota. Where do y'all live and any information you have I would really appreciate. Thanks for writing me hope to hear from you soon. Melody --- Doug wrote: > Melody, > Hey!! I read your post and most of the time if I > don't have a really > pertinent question to pose to the group, I just lurk > A LOT. But your > post caught my attention. Your son, when is his > birthday? My son, > Caylob is 16 months also. I would love to hear > about your angel and > tell you a little about mine. Since it appears that > they are the same > age, it may benefit both of us. > Now Caylob was diagnosed with Lissencephaly when he > was 3 months. Then > we got the chance of a lifetime to go to the > conference in July of 2001 > in Indiana and he got to see Dr. Dobyns. Have you > been in contact with > him yet? Anyway he was then PROPERLY diagnosed with > PMG and that was at > 8 months old. > You will see that even though all of our angels here > have primarily the > same diagnosis, all of them are completely different > in their > development, progress, seizure activity, etc. > I think that you will be extremely happy that you > found our group. > There are some wonderful people here and a lot of > times you can really > get some good advice or experiences here > Like I said once before, I would love to hear more > about your son, too. > Where do you live? > Feel free to e-mail me > _22792@... > > > Nichole , mommy to Caylob, 14 months, PMg, > shunt, G-tube, with a > new sis named Kamrynn, and has the biggest blue eyes > and the most > beautiful blonde curls ever!!!! > _22792@... > > New Member - Melody > > Hello! Yes, my 16mth old son was just diagnosed with > polymicrogyria and I was just trying to find a > little > information out about it and I stumbled across this > group. Thank you. Melody > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hello. My sons (Keegan) birthday is November 9. Keegan is definitely an angel. He was just diagnosed with pmg but he also has schizencephaly. The genetics doctor knows Dr. Dobbins so he is going to try and have him look at his records. We got diagnosed with schizencephaly at one year and it just seems like they keep coming up with more and more. The poor baby has seen more doctors in the past couple of months of his life than I have my whole life. This has been really hard on me but I keep on ticking but it just seems like noone knows anything and as you know I'm sure that is frustrating. He had his first seizures the other day and it just broke my heart because I was kinda hoping that would be one thing he wouldn't have to deal with. Well I could babble on forever about this, but tell me about your son I would love to hear about him.By the way We live in Minnesota. Where do y'all live and any information you have I would really appreciate. Thanks for writing me hope to hear from you soon. Melody --- Doug wrote: > Melody, > Hey!! I read your post and most of the time if I > don't have a really > pertinent question to pose to the group, I just lurk > A LOT. But your > post caught my attention. Your son, when is his > birthday? My son, > Caylob is 16 months also. I would love to hear > about your angel and > tell you a little about mine. Since it appears that > they are the same > age, it may benefit both of us. > Now Caylob was diagnosed with Lissencephaly when he > was 3 months. Then > we got the chance of a lifetime to go to the > conference in July of 2001 > in Indiana and he got to see Dr. Dobyns. Have you > been in contact with > him yet? Anyway he was then PROPERLY diagnosed with > PMG and that was at > 8 months old. > You will see that even though all of our angels here > have primarily the > same diagnosis, all of them are completely different > in their > development, progress, seizure activity, etc. > I think that you will be extremely happy that you > found our group. > There are some wonderful people here and a lot of > times you can really > get some good advice or experiences here > Like I said once before, I would love to hear more > about your son, too. > Where do you live? > Feel free to e-mail me > _22792@... > > > Nichole , mommy to Caylob, 14 months, PMg, > shunt, G-tube, with a > new sis named Kamrynn, and has the biggest blue eyes > and the most > beautiful blonde curls ever!!!! > _22792@... > > New Member - Melody > > Hello! Yes, my 16mth old son was just diagnosed with > polymicrogyria and I was just trying to find a > little > information out about it and I stumbled across this > group. Thank you. Melody > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2002 Report Share Posted March 30, 2002 Sorry for the long delay. What is pachygyria? Thank you for writing me back I am really enjoying hearing about everyones children unfortunately I am so busy with school, work and Keegan I don't have too much time to always reply promptly but I think of you all and your angels often. --- Leonard Yourth wrote: > Melody, > > Welcome! My daughter at 17 months was diagnosed > originally with Pachygyria > then it was changed to Polymicrogyria (PMG) and back > again finally to > Pachygyria! She is very high functioning and we > belong to both the > Lissencephaly Loop as well as the PMG loop. > will be 4 yrs old on > Mar. 28th and overall functions with a 1 year delay. > She attends UCP 5 full > days a week and they are WONDERFUL!!! I would love > to hear more about your > son. > > Yourth > Wife to Lenny, NYC Firefighter > Mommy to Elissa (6), LJ (5), (Almost 4), and > (18 months) > is our Liss Kid. She can walk, run, and even > slow down and turn as > well as stop. She can also hop, knows her ABC's, can > count to 20 and feeds > herself about as neatly as the lionesses on National > Geographic. has > Pachygyria involving more than 50% of her brain, > microcephaly, hypertonia, > hypotonia, mild cerebral palsy in her legs and has > no seizures. > Our AIM/YAHOO screen name is Yourthclan > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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