Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 My daughter Syd was diagnosed with Bilateral Frontal PMG, but the truth is that although one doctor said its mainly in the frontal area, it does " stretch back " all the way to the perisylvian area as well (one one side). At first I tried to take comfort in the fact that it was BF because those affected in the frontal regions of the brain, according to several literature studies I looked at, have less incidence of seizure. But the truth is, Syd could have a seizure at any given time, though hasn't as of yet. I asked the second neuro we saw at Children's Hosp. in Boston, Dr. Walsh's team, why it has she was diagnosed with Bilateral Frontal and not peris, and he said that it's not cut and dry, and the area most affected were both frontal regions and that's why they called it that.  Having said all of that, Syd is now three, and I don't think too often of PMG anymore. I think of all the gains she is making and what else needs to be done to continue on that path, because aside from being aware of seizure activity, I have come to think of Syd as a kid with CP who continues to blossom and grow. I guess over time, I have begun to worry less about the diagnosis and more about how to address the symptoms the diagnosis has caused. But I think you ask the neuro for a very concrete explanation--it helped me to hear it instead of just trying to infer things from what various docs said.  Good luck! ________________________________ To: polymicrogyria Sent: Friday, October 28, 2011 1:16 PM Subject: BFPP/BPP?  I have a question. My 19 month old son was diagnosed w/ Bilateral Frontoparietal PMG when I was pregnant. We had an MRI today because his head size is continuing to increase rapidly. While we were looking over the MRI with the surgeon - I noticed on the notes on his MRI that it said that the perisylvian areas are affected as well. I assumed that since he was diagnosed w/ just BFPP and the word perisylvian wasn't in the name of his malformation that the perisylvian areas weren't affected. It probably doesn't really matter in the grand scheme of things but I wanted to see if anyone can shed some light on this before I talk to our neuro. Is there a difference between BFPP and BPP? From the research I've done - it doesn't look like it changes his diagnosis at  all...I'm just curious. Thanks for any help you can give me! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 Thanks you guys. Catrina, I haven't looked at that article in a long time. So between that and what said it makes sense, I guess. Since he has the malformation all around that's the main diagnosis or the way to give it a name. And , you're right. We try to focus on all the great things Luke can do that we didn't think he'd be able to do. I like to read about his pmg, though, just to stay as informed as possible. I haven't kept as close of an eye on stuff about the perisylvian area because I thought that didn't affect us. Now I will. Thanks, Ladies!! > Hi Mel, > > I thought I would share an article from NIH which has the most information > that I have seen in one place. There's a lot of medical jargon as it is a > scholarly article but there is a breakdown of the types and even some > diagrams of what each type sort of looks like, etc. I think there is a lot > of overlap so I'm sure it makes it harder to say definitively. > > Hope this helps: > > http://www.ncbi.nlm.nih.gov/books/NBK1329/ > > Catrina -Brie's Gram > > On Fri, Oct 28, 2011 at 1:16 PM, mel.rush@... <melrush75@... > >wrote: > > > ** > > > > > > I have a question. My 19 month old son was diagnosed w/ Bilateral > > Frontoparietal PMG when I was pregnant. We had an MRI today because his > head > > size is continuing to increase rapidly. While we were looking over the > MRI > > with the surgeon - I noticed on the notes on his MRI that it said that > the > > perisylvian areas are affected as well. I assumed that since he was > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name of his > > malformation that the perisylvian areas weren't affected. It probably > > doesn't really matter in the grand scheme of things but I wanted to see > if > > anyone can shed some light on this before I talk to our neuro. Is there a > > difference between BFPP and BPP? From the research I've done - it doesn't > > look like it changes his diagnosis at all...I'm just curious. > > Thanks for any help you can give me! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 Pneumonia is a result of the soft airway and difficulty managing secretions, saliva, food, etc. Â Our son is often choking even though he's fed thru a J-tube, he just can't manage his own secretions. He ends up aspirating a lot which fills his lungs with fluid and makes him more susceptible to pneumonia. ________________________________ To: polymicrogyria Cc: mel rush Sent: Friday, October 28, 2011 9:51 PM Subject: Re: BFPP/BPP? Â I didn't realize that pneumonia was a complication of PMG and wonder how they would be related - anyone know? Our daughter had a severe bout of pneumonia at 4 years of age but thankfully recovered and hasn't had another one since. > > Thanks you guys. Catrina, I haven't looked at that article in a long time. > So between that and what said it makes sense, I guess. Since he has > the malformation all around that's the main diagnosis or the way to > give it > a name. > And , you're right. We try to focus on all the great things Luke can > do that we didn't think he'd be able to do. I like to read about his pmg, > though, just to stay as informed as possible. I haven't kept as close > of an > eye on stuff about the perisylvian area because I thought that didn't > affect > us. Now I will. > Thanks, Ladies!! > On Oct 28, 2011 7:29 PM, " Catrina Byrge " <catrina1118@... > <mailto:catrina1118%40gmail.com>> wrote: > > > Hi Mel, > > > > I thought I would share an article from NIH which has the most > information > > that I have seen in one place. There's a lot of medical jargon as it > is a > > scholarly article but there is a breakdown of the types and even some > > diagrams of what each type sort of looks like, etc. I think there is > a lot > > of overlap so I'm sure it makes it harder to say definitively. > > > > Hope this helps: > > > > http://www.ncbi.nlm.nih.gov/books/NBK1329/ > > > > Catrina -Brie's Gram > > > > On Fri, Oct 28, 2011 at 1:16 PM, mel.rush@... > <mailto:mel.rush%40ymail.com> <melrush75@... > <mailto:melrush75%40gmail.com> > > >wrote: > > > > > ** > > > > > > > > > I have a question. My 19 month old son was diagnosed w/ Bilateral > > > Frontoparietal PMG when I was pregnant. We had an MRI today > because his > > head > > > size is continuing to increase rapidly. While we were looking over the > > MRI > > > with the surgeon - I noticed on the notes on his MRI that it said that > > the > > > perisylvian areas are affected as well. I assumed that since he was > > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name > of his > > > malformation that the perisylvian areas weren't affected. It probably > > > doesn't really matter in the grand scheme of things but I wanted > to see > > if > > > anyone can shed some light on this before I talk to our neuro. Is > there a > > > difference between BFPP and BPP? From the research I've done - it > doesn't > > > look like it changes his diagnosis at all...I'm just curious. > > > Thanks for any help you can give me! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Hi Thea, My son does not aspirate but he drools buckets and we have tried both Botox and the meds. Botox worked great the first time he got it done, he didn't drool for almost an entire year. The second time we had it done, it didn't work at all. We also tried the Scopalamine patch which worked great, but he had a reaction to the adhesive and we had to stop it. We didn't like the Robinul because we had to give it 4 times a day to see any result and we went to an ENT for a surgery consult, but I backed out because I didn't think the results were guaranteed enough to warrant putting him through it. So that's our experience. Hope it helps. Sue Mom to Meghan(15) and (10) BFPP, moderate spastic quad CP > > > > > > > ** > > > > > > > > > > > > I have a question. My 19 month old son was diagnosed w/ Bilateral > > > > Frontoparietal PMG when I was pregnant. We had an MRI today > > because his > > > head > > > > size is continuing to increase rapidly. While we were looking over the > > > MRI > > > > with the surgeon - I noticed on the notes on his MRI that it said that > > > the > > > > perisylvian areas are affected as well. I assumed that since he was > > > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name > > of his > > > > malformation that the perisylvian areas weren't affected. It probably > > > > doesn't really matter in the grand scheme of things but I wanted > > to see > > > if > > > > anyone can shed some light on this before I talk to our neuro. Is > > there a > > > > difference between BFPP and BPP? From the research I've done - it > > doesn't > > > > look like it changes his diagnosis at all...I'm just curious. > > > > Thanks for any help you can give me! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Hi Sue, How old was when he got botox? Where exactly is the injection site? Was it painful for him? My daughter is two and I, too am wondering what to do. Karla Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 11/1/2011 9:26 am To: polymicrogyria Subject: Re: BFPP/BPP? Hi Thea, My son does not aspirate but he drools buckets and we have tried both Botox and the meds. Botox worked great the first time he got it done, he didn't drool for almost an entire year. The second time we had it done, it didn't work at all. We also tried the Scopalamine patch which worked great, but he had a reaction to the adhesive and we had to stop it. We didn't like the Robinul because we had to give it 4 times a day to see any result and we went to an ENT for a surgery consult, but I backed out because I didn't think the results were guaranteed enough to warrant putting him through it. So that's our experience. Hope it helps. Sue Mom to Meghan(15) and (10) BFPP, moderate spastic quad CP > > > > > > > ** > > > > > > > > > > > > I have a question. My 19 month old son was diagnosed w/ Bilateral > > > > Frontoparietal PMG when I was pregnant. We had an MRI today > > because his > > > head > > > > size is continuing to increase rapidly. While we were looking over the > > > MRI > > > > with the surgeon - I noticed on the notes on his MRI that it said that > > > the > > > > perisylvian areas are affected as well. I assumed that since he was > > > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name > > of his > > > > malformation that the perisylvian areas weren't affected. It probably > > > > doesn't really matter in the grand scheme of things but I wanted > > to see > > > if > > > > anyone can shed some light on this before I talk to our neuro. Is > > there a > > > > difference between BFPP and BPP? From the research I've done - it > > doesn't > > > > look like it changes his diagnosis at all...I'm just curious. > > > > Thanks for any help you can give me! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 Hi Karla, was around 5 when we first had it done. It was kind of not a scheduled thing the first time. We were there for his regular 6 month Botox injections in his legs and he was having an extra drooly day. His physiatrist asked if I wanted to inject his parotid glands while she was already working on him and he was sedated, and I agreed without really looking into it(which is so not like me, but I really trust this Dr). Anyway, she did it under ultrasound guidance, it worked fantastic and he had no complications. After almost a year with little to no drool, he started drooling more and more and when she saw him , she suggested we do it again. The 2nd time we did it the right way, fully sedated in interventional radiology, but it didnt work at all. That has pretty much been our experience with Botox in general... the first time he has an area injected, the results are amazing... successive injections into the same areas have shown little improvement. We stopped Botox all together about 2 yrs ago as he had pretty much gotten all he was going to get out of it. He still drools quite a bit, but we have decided just to deal with it for now rather than put him through yet another surgery. Hope that helps. Sue Mom to Meghan(15) and (10) BFPP, moderate spastic quad CP > > > > > > > ** > > > > > > > > > > > > I have a question. My 19 month old son was diagnosed w/ Bilateral > > > > Frontoparietal PMG when I was pregnant. We had an MRI today > > because his > > > head > > > > size is continuing to increase rapidly. While we were looking over the > > > MRI > > > > with the surgeon - I noticed on the notes on his MRI that it said that > > > the > > > > perisylvian areas are affected as well. I assumed that since he was > > > > diagnosed w/ just BFPP and the word perisylvian wasn't in the name > > of his > > > > malformation that the perisylvian areas weren't affected. It probably > > > > doesn't really matter in the grand scheme of things but I wanted > > to see > > > if > > > > anyone can shed some light on this before I talk to our neuro. Is > > there a > > > > difference between BFPP and BPP? From the research I've done - it > > doesn't > > > > look like it changes his diagnosis at all...I'm just curious. > > > > Thanks for any help you can give me! > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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