Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 You have enough to worry about as it is. I wouldn't stress out about it. Just take it one day at a time and enjoy the moment. Congratulations on your little one! From: lorrainetierney <lormcquinnhotmail (DOT) com> Subject: Re: Appointments with Dr Dobyns To: polymicrogyria@ yahoogroups. com Date: Sunday, July 5, 2009, 4:05 PM Hi Kesa, My name is Lorraine and my son Dylan who is three has BPP. I was on holidays when I read this post, and It's taken me until now to find the post again, so that I could reply. My son was originally diagnosed with Pachygyria by a Neurologist in Dublin, Ireland. A geneticist in Cardiff changed that diagnosis some months later to BPP. Recently Dr. Dobyns reviewed his MRI (I sent it by mail, we have never been to see him) He agreed that it was PMG but said it was an arguable point as to whether it was Perisylvian or Occipital?? Dylan was born with severe bilateral club foot. They have told me my sons condition is Genetic due to the fact that it is bilateral. They have ruled out CMV as a possible cause and we have had all the genetic tests done. Dylan sat unaided for the first time at two, he can roll over, but does not crawl. He can weight bear on his feet but will only stay that way for a short while. He feeds well enough, with mashed food. All his drinks are thickened because he does aspirate. He has limited use of his hands and he is non verbal. I was interested to hear that you said Dr. Dobyns team are on the verge of identifying a gene? When did you find this out, and how did you come to learn this. Any information you have I'd be greatful for. I think Dylans symptoms sound some what similar to Rowans. Thanks a million, Lorraine > > We are looking at traveling to Chicago sometime this year to see Dr Dobyns. He thinks that maybe my daughter's type of PMG is a sub-group that they are on the verge of identifying a gene for and has several other kids with the same type of " symptoms " as Rowan. > > I am kind of excited and scared at the same time. My daughter is the only child I have with her father and we have no idea what could have caused her PMG. I'm scared to have anymore kids if it's genetic. > > We've been waiting a long time for the experimental genetic results to come back. I'm not sure if it will be a relief or not to have an answer or not. I guess it's a moot point but one I can't but help to look forward to hearing about. > > Any suggestions for good hotels by the hospital he works at? Just trying to look ahead and be prepared. Thank you. Kesa and Rowan >                        Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2009 Report Share Posted July 5, 2009 shannon I have 2 my oldest zach has pmg hes 5 and my youngest zoey is 2.5 yrs she is " normal " . dont stress being pregnant is stress enough enjoy the new one. natasha mom to zach 5 and zoey 2.5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2009 Report Share Posted July 6, 2009 , So far the thinking (per Dr. D) is that if you have had a girl first with BPP, then you are really unlikley to have a second child with it. It's never been documented. If you have a boy with BPP, then you are at greater risk for a second child to have BPP. I had a girl first and then a second girl. My second girl doesn't have BPP but might have Cerebral Palsy - will know more in the coming months. We knew that since we had one child wtih a disability we were at greater risk to have another child with a disability. 11-13% chance. Everybody is at 6% chance. Compared to PMG, CP is nothing to me. I can handle it. My BPP daughter is non-verbal, non-sign, non-pointing...just screams. And, her seizures are terrible. Stay positive. I am sure everything will turn out great!!! Odds are in your favor! ________________________________ To: polymicrogyria Sent: Sunday, July 5, 2009 6:53:29 PM Subject: Re: Re: Siblings Hi- I'm 33 weeks pregnant with my second child. My daughter is 3 and has BPP. I have become more anxious and scared recently the more I read about the genetic link of BPP from various chats and an article online. I know I've written about this in the past but how many of you whose children have bilateral perisylvian PMG have other children that are not affected? They told me the chances were slim but now I'm questioning that. Dr. Dobyns has never reviewed 's films but we are followed by the Walsh Lab here in Boston. is non-verbal, walks independently although very unsteady for short distances, cognitively delayed, swallowing has improved to most foods although we need to pace her. She was on thickened but has passed her most recent swallowing study. Any thoughts would be great. Thanks From: lorrainetierney <lormcquinnhotmail (DOT) com> Subject: Re: Appointments with Dr Dobyns To: polymicrogyria@ yahoogroups. com Date: Sunday, July 5, 2009, 4:05 PM Hi Kesa, My name is Lorraine and my son Dylan who is three has BPP. I was on holidays when I read this post, and It's taken me until now to find the post again, so that I could reply. My son was originally diagnosed with Pachygyria by a Neurologist in Dublin, Ireland. A geneticist in Cardiff changed that diagnosis some months later to BPP. Recently Dr. Dobyns reviewed his MRI (I sent it by mail, we have never been to see him) He agreed that it was PMG but said it was an arguable point as to whether it was Perisylvian or Occipital?? Dylan was born with severe bilateral club foot. They have told me my sons condition is Genetic due to the fact that it is bilateral. They have ruled out CMV as a possible cause and we have had all the genetic tests done. Dylan sat unaided for the first time at two, he can roll over, but does not crawl. He can weight bear on his feet but will only stay that way for a short while. He feeds well enough, with mashed food. All his drinks are thickened because he does aspirate. He has limited use of his hands and he is non verbal. I was interested to hear that you said Dr. Dobyns team are on the verge of identifying a gene? When did you find this out, and how did you come to learn this. Any information you have I'd be greatful for. I think Dylans symptoms sound some what similar to Rowans. Thanks a million, Lorraine > > We are looking at traveling to Chicago sometime this year to see Dr Dobyns. He thinks that maybe my daughter's type of PMG is a sub-group that they are on the verge of identifying a gene for and has several other kids with the same type of " symptoms " as Rowan. > > I am kind of excited and scared at the same time. My daughter is the only child I have with her father and we have no idea what could have caused her PMG. I'm scared to have anymore kids if it's genetic. > > We've been waiting a long time for the experimental genetic results to come back. I'm not sure if it will be a relief or not to have an answer or not. I guess it's a moot point but one I can't but help to look forward to hearing about. > > Any suggestions for good hotels by the hospital he works at? Just trying to look ahead and be prepared. Thank you. Kesa and Rowan > Quote Link to comment Share on other sites More sharing options...
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