Guest guest Posted October 28, 2011 Report Share Posted October 28, 2011 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 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@... 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 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 October 31, 2011 Report Share Posted October 31, 2011 Do kids who aspriate frequently ever get Botox injections in their salivary glands, or take the medications for excessive drooling? It might help. I know kids who have CP who wind up doing this for similar reasons. Thea ( : Re: BFPP/BPP? 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 October 31, 2011 Report Share Posted October 31, 2011 Yes, I don't know a lot about it (my daughter is only 3months) but Brie's doctors have mentioned both things already. Though shes a little young for Botox they say. I'm not really ready for all of that but she does get chocked on her saliva - > ** > > > > Do kids who aspriate frequently ever get Botox injections in their > salivary glands, or take the medications for excessive drooling? It might > help. I know kids who have CP who wind up doing this for similar reasons. > Thea > ( : > > > Re: BFPP/BPP? > > 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 October 31, 2011 Report Share Posted October 31, 2011 Our daughter had botox in her submandibular glands however we did not see a significant improvement so we went ahead and had her aubmandibular glands removed. Sent from my Verizon Wireless BlackBerry Re: BFPP/BPP? 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> > <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> > <mailto:mel.rush%40ymail.com>; <melrush75@... <mailto:melrush75%40gmail.com> > <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 October 31, 2011 Report Share Posted October 31, 2011 Hey all -- I'm new to this group and this is my first time commenting. So, hello My little guy is 9 weeks old (diagnosed with BPP at 3 weeks) and he's been on Robinol since he was around 4 weeks. We took him off for a few days last week as he had an apneic episode and there was a concern that the med was making his secretions too thick. Well, he did not do well at all and had to constantly be suctioned (we're talking every 15 minutes). He's back on the Robinol and I wouldn't have it any other way. Also, he has an ileostomy for the time being (he got necrotizing enterocoltis and then a perforated bowel) and the Robinol hasn't had any poor side effects on that (ie drying out the stoma). Bottom line: Robinol rocks our world. > ** > > > > Do kids who aspriate frequently ever get Botox injections in their > salivary glands, or take the medications for excessive drooling? It might > help. I know kids who have CP who wind up doing this for similar reasons. > Thea > ( : > > Re: BFPP/BPP? > > 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...
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