Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 Hello group, I have a few questions for those of you who's children have seizure. My son Mason (22months) has seizures and BF polymicrogyria. He has about 1-5 seizures a week but when he's sick he can have as many as 3 seizures a day. His seizures usually last about 2-5mins, and if they're longer than 5 mins we have to give him diastat which doesn't happen very often but we have had to give it to him. My question is how do you tell when they're out of the seizure? Its hard for me to tell and I'm going to discuss it with his neurologist next time we go but I wanted to see if anyone had any sigestions. Mason can't move around much so that makes it harder to tell also. During his seizures he jackknifes and then extends then starts kicking and his eyes are usually dialated while he's in the seizure. If anyone has any advise for me that would be great. Thanks and have a great night! Chrissy Mom to Mason (22months, PMG, Cortical vision impairment, seizure disorder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Could somebody please send me Dr. Dobyns contact info? My daughter Lily just had an MRI and I would like to send him her MRI. Thanks, -------------- Original message -------------- My daughter also has had multiple mri's showing cortical dysplasia. The mri report said " areas of cortical dysplasia and/or polymicrogyria " . When I noticed that, I joined this group and learned about Dr. Dobyns, so I sent her MRI to him. He just got back to me saying he didn't really see polymicrogyria, but more likely a type of focal cortical dysplasia. Apparently areas of FCD are more blurry and PMG is more defined. I'm messing up his words, but it seems that there could be some confusion about which one it is depending on who is looking at your mri. I would say at this point you should send your records to him and see what he says about which one it is. Showing FCD instead of PMG might not change your treatment options much as far as the seizures go, but it might make your doctors starting talking about surgery to remove the areas of dysplasia. Not that brain surgery is a relief! But it does seem to be an option in some kids depending on where the dysplasia is and if it's only on one side, and doctors have started going to it as opposed to trying every single seizure drug available. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 I'm not sure if you get them back. The last time we got an MRI done, I requested it be put on a CD. I burned a copy for myself and then sent the CD. I didn't ask for it back because I don't need it. You could certainly ask when you call - the secretary is really helpful. > > > > I am also interested in Dr. Dobyns info.What can you tell me about > this > > specialist? My grandson has been having uncontrollable seizures > and he had > > an MRI after birth which was abnormal, he has also coded more than > once and > > possible could have brain damage from apoxia to the brain. > > Thank you, > > Liz > > > > -- Re: Re:seizures > > > > Could somebody please send me Dr. Dobyns contact info? My daughter > Lily just > > had an MRI and I would like to send him her MRI. > > Thanks, > > > > > > -------------- Original message -------------- > > From: laura knott <lauranotdigangi@> > > My daughter also has had multiple mri's showing cortical > dysplasia. The mri > > report said " areas of cortical dysplasia and/or polymicrogyria " . > When I > > noticed that, I joined this group and learned about Dr. Dobyns, so > I sent > > her MRI to him. He just got back to me saying he didn't really see > > polymicrogyria, but more likely a type of focal cortical dysplasia. > > Apparently areas of FCD are more blurry and PMG is more defined. > I'm messing > > up his words, but it seems that there could be some confusion > about which > > one it is depending on who is looking at your mri. I would say at > this point > > you should send your records to him and see what he says about > which one it > > is. Showing FCD instead of PMG might not change your treatment > options much > > as far as the seizures go, but it might make your doctors starting > talking > > about surgery to remove the areas of dysplasia. Not that brain > surgery is a > > relief! But it does seem to be an option in some kids depending on > where the > > dysplasia is and if > > it's only on one side, and doctors have started going to it as > opposed to > > trying every single seizure drug available. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Thanks. lauranotdigangi wrote: I'm not sure if you get them back. The last time we got an MRI done, I requested it be put on a CD. I burned a copy for myself and then sent the CD. I didn't ask for it back because I don't need it. You could certainly ask when you call - the secretary is really helpful. > > > > I am also interested in Dr. Dobyns info.What can you tell me about > this > > specialist? My grandson has been having uncontrollable seizures > and he had > > an MRI after birth which was abnormal, he has also coded more than > once and > > possible could have brain damage from apoxia to the brain. > > Thank you, > > Liz > > > > -- Re: Re:seizures > > > > Could somebody please send me Dr. Dobyns contact info? My daughter > Lily just > > had an MRI and I would like to send him her MRI. > > Thanks, > > > > > > -------------- Original message -------------- > > From: laura knott <lauranotdigangi@> > > My daughter also has had multiple mri's showing cortical > dysplasia. The mri > > report said " areas of cortical dysplasia and/or polymicrogyria " . > When I > > noticed that, I joined this group and learned about Dr. Dobyns, so > I sent > > her MRI to him. He just got back to me saying he didn't really see > > polymicrogyria, but more likely a type of focal cortical dysplasia. > > Apparently areas of FCD are more blurry and PMG is more defined. > I'm messing > > up his words, but it seems that there could be some confusion > about which > > one it is depending on who is looking at your mri. I would say at > this point > > you should send your records to him and see what he says about > which one it > > is. Showing FCD instead of PMG might not change your treatment > options much > > as far as the seizures go, but it might make your doctors starting > talking > > about surgery to remove the areas of dysplasia. Not that brain > surgery is a > > relief! But it does seem to be an option in some kids depending on > where the > > dysplasia is and if > > it's only on one side, and doctors have started going to it as > opposed to > > trying every single seizure drug available. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 We saw Dobyns in March, the " films " we took to Dobyns were on a CD that was provided by the hospital that took the MRI and EEG. Dobyns asked if he could keep them because he was going to share them with a colleague. I don't think the hospital that provided the CD even charged us for it. We told him he could keep it. Penny - Step mom to nela 14 - Unilateral PMG-PNH ich wrote: Do they return the films to you? lauranotdigangi wrote: I don't know as much about him as some of the other members of the group, but I know he's a geneticist who studies PMG, and many here have seen him. He will also review films for free. I have his latest contact info as follows: Following is the information for Dr. Dobyns: B. Dobyns, MD, PhD University of Chicago Department of Human Genetics 5841 S. land Avenue Room L151, MC 0077 Chicago, IL 60637 Mail films to: 920 E. 58th Street CLSC 319 Chicago, IL 60637 Email wbd@... Office Phone Office Fax If you do a search through this database of old messages, you will find tons of info and opinions on him. I sent him my daughter's MRI and he sent a brief email after he looked at it, and then called me and we talked for 20 minutes. Pretty amazing, considering there was no charge. > > I am also interested in Dr. Dobyns info.What can you tell me about this > specialist? My grandson has been having uncontrollable seizures and he had > an MRI after birth which was abnormal, he has also coded more than once and > possible could have brain damage from apoxia to the brain. > Thank you, > Liz > > -- Re: Re:seizures > > Could somebody please send me Dr. Dobyns contact info? My daughter Lily just > had an MRI and I would like to send him her MRI. > Thanks, > > > -------------- Original message -------------- > > My daughter also has had multiple mri's showing cortical dysplasia. The mri > report said " areas of cortical dysplasia and/or polymicrogyria " . When I > noticed that, I joined this group and learned about Dr. Dobyns, so I sent > her MRI to him. He just got back to me saying he didn't really see > polymicrogyria, but more likely a type of focal cortical dysplasia. > Apparently areas of FCD are more blurry and PMG is more defined. I'm messing > up his words, but it seems that there could be some confusion about which > one it is depending on who is looking at your mri. I would say at this point > you should send your records to him and see what he says about which one it > is. Showing FCD instead of PMG might not change your treatment options much > as far as the seizures go, but it might make your doctors starting talking > about surgery to remove the areas of dysplasia. Not that brain surgery is a > relief! But it does seem to be an option in some kids depending on where the > dysplasia is and if > it's only on one side, and doctors have started going to it as opposed to > trying every single seizure drug available. > > > > Quote Link to comment Share on other sites More sharing options...
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