Guest guest Posted July 25, 2009 Report Share Posted July 25, 2009 Hello everyone! Once again I'm back for more questions!! Well, my son started having seizures again in March and they switched his meds, took him off one, put him back on his previous one in addition to a new one!! ....My poor little guy!! Well, now we were referred over to a neurosurgeon to see if will be a good candidate for surgery! The neurosurgeon thinks will be, he has unilateral right sided PMG, we have a VEEG set up for September 29th and they will also do another MRI. We're scared to death but hopeful that our son will be a candidate for surgery and be able to be " cured " . Has any one in this group ever been through this or heard of families who have and have walked away with excellent results? Also, if anyone has some insight for me on what to expect for his VEEG, we know they're going to take him off his meds. to provoke some seizures, they want to get atleast 3, he'll probably be hooked up for 2 days?!?! The neurosurgeon is relatively new to our area but is said to be known world wide, he got blown out of where he worked before with the Katrina storms? His name is Dr.Bruce Fisch, anyone heard of him?!?! Thank you for your input! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Ugh, I just wrote you a long reply and then lost it before it got sent! So this will be short. My daughter had a portion of her temporal/parietal lobes removed in 2006 at 20 months. She went from 100+ seizures a day to 3-4 per year. She has bilateral PMG and a small focus on the left. Please let me know what type of info you'd like, we'd be happy to share! For the VEEG, prepare to keep your kiddo entertained in bed for however long the test takes! Take toys, movies, favorite snacks, etc. A VEEG is similar to an EEG, just longer and they use stronger adhesive to keep the leads on longer. Your son will be confined to bed or at least a small area near the bed, but within view of the camera so they can catch every seizure. They'll give you a button to push whenever you see a seizure. If they have to give meds to stop a long/bad seizure, it can make the test longer in the end as you'll have to wait for the meds to wear off before he has more seizures. We've had several of these done and they can be a short as 24 hrs or as long as a week! It all depends on how many seizures they have before the docs see what they need. LoRene, mom to Molly (4 yrs, BPP) To: polymicrogyria From: kat_flynn05@... Date: Sun, 26 Jul 2009 00:12:01 +0000 Subject: surgery?! Hello everyone! Once again I'm back for more questions!! Well, my son started having seizures again in March and they switched his meds, took him off one, put him back on his previous one in addition to a new one!! ....My poor little guy!! Well, now we were referred over to a neurosurgeon to see if will be a good candidate for surgery! The neurosurgeon thinks will be, he has unilateral right sided PMG, we have a VEEG set up for September 29th and they will also do another MRI. We're scared to death but hopeful that our son will be a candidate for surgery and be able to be " cured " . Has any one in this group ever been through this or heard of families who have and have walked away with excellent results? Also, if anyone has some insight for me on what to expect for his VEEG, we know they're going to take him off his meds. to provoke some seizures, they want to get atleast 3, he'll probably be hooked up for 2 days?!?! The neurosurgeon is relatively new to our area but is said to be known world wide, he got blown out of where he worked before with the Katrina storms? His name is Dr.Bruce Fisch, anyone heard of him?!?! Thank you for your input! _________________________________________________________________ NEW mobile Hotmail. Optimized for YOUR phone. Click here. http://windowslive.com/Mobile?ocid=TXT_TAGLM_WL_CS_MB_new_hotmail_072009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 And how is your daughter doing now? My son has a speech delay, he doesn't speak as well as a 4 year old should. We talked to a family who I used to take care of their daughter who was having seizures, and she got surgery. They said she was like a completley different child, talking more and just doing stuff as she should now? > > > Ugh, I just wrote you a long reply and then lost it before it got sent! So this will be short. My daughter had a portion of her temporal/parietal lobes removed in 2006 at 20 months. She went from 100+ seizures a day to 3-4 per year. She has bilateral PMG and a small focus on the left. Please let me know what type of info you'd like, we'd be happy to share! > > > > For the VEEG, prepare to keep your kiddo entertained in bed for however long the test takes! Take toys, movies, favorite snacks, etc. A VEEG is similar to an EEG, just longer and they use stronger adhesive to keep the leads on longer. Your son will be confined to bed or at least a small area near the bed, but within view of the camera so they can catch every seizure. They'll give you a button to push whenever you see a seizure. If they have to give meds to stop a long/bad seizure, it can make the test longer in the end as you'll have to wait for the meds to wear off before he has more seizures. We've had several of these done and they can be a short as 24 hrs or as long as a week! It all depends on how many seizures they have before the docs see what they need. > > > > LoRene, mom to Molly (4 yrs, BPP) > > > > To: polymicrogyria > From: kat_flynn05@... > Date: Sun, 26 Jul 2009 00:12:01 +0000 > Subject: surgery?! > > > > > > Hello everyone! Once again I'm back for more questions!! Well, my son started having seizures again in March and they switched his meds, took him off one, put him back on his previous one in addition to a new one!! ....My poor little guy!! Well, now we were referred over to a neurosurgeon to see if will be a good candidate for surgery! The neurosurgeon thinks will be, he has unilateral right sided PMG, we have a VEEG set up for September 29th and they will also do another MRI. We're scared to death but hopeful that our son will be a candidate for surgery and be able to be " cured " . Has any one in this group ever been through this or heard of families who have and have walked away with excellent results? Also, if anyone has some insight for me on what to expect for his VEEG, we know they're going to take him off his meds. to provoke some seizures, they want to get atleast 3, he'll probably be hooked up for 2 days?!?! The neurosurgeon is relatively new to our area but is said to be known world wide, he got blown out of where he worked before with the Katrina storms? His name is Dr.Bruce Fisch, anyone heard of him?!?! Thank you for your input! > > > > > > > > > > _________________________________________________________________ > NEW mobile Hotmail. Optimized for YOUR phone. Click here. > http://windowslive.com/Mobile?ocid=TXT_TAGLM_WL_CS_MB_new_hotmail_072009 > > Quote Link to comment Share on other sites More sharing options...
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