Guest guest Posted October 31, 2007 Report Share Posted October 31, 2007 Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option. At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.) Any insight would be greatly appreciated. Sincerely, Kandy ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2007 Report Share Posted October 31, 2007 Kandy, I wish surgery was an option for nela, I've read/heard of so many success stories when focal areas are small and operable. Unfortunately the seizure activity and malformation are on both sides of Marz' brain. While the PMG is on one side there is heterotopia on the other side and both sides generate seizure activity, the latest EEG now shows activity and slowing over her left temporal lobe, a new area for abnormal activity since the last scan was done (a year ago). I trust Dobyns enough that I'd investigate his suggestion with whatever neurosurgeon he recommends. Get another opinion if your still not sure and weigh your options. I can only tell you that the long term outcome of inoperable, intractable seizures is usually very poor and I see it first hand with my Step Daughter. Its difficult to watch what she goes through with no hope of improvement in sight and no other option but more drugs. BTW, nela has been on depakote for years, she has lost most of her hair from it and has already broken one bone (most AEDs cause Osteoporosis) and is overweight partially due to this med and she still has multiple daily seizures of a just about every type. She will be weened off of it next and a new drug (yet to be decided) will be introduced. Its a crap shoot that, unfortunately, we're not winning yet. Good luck but think hard about it, if the seizures are fairly benign it may not be worth it, but if they could cause further damage, surgery could be a brain sparing option believe it or not. Penny - Step Mom to nela 15 yo with unilateral pmg and pnh KANHOW@... wrote: Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option. At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.) Any insight would be greatly appreciated. Sincerely, Kandy ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2007 Report Share Posted October 31, 2007 Hi, We are on our way to Cleveland Clinic the last week of Nov to have our son tested to see if he would benefit from surgery. This is all quite new to me and I am still catching up. He was diagnosed in 2002-2003 with Cortical Dysplasia and Polymicrogyria, but at that time our Neuro really glossed over it. His main concern was that our son fell into the ASD (Autism Spectrum) and wanted to work on that and treat with meds. We had no sucess controlling our sons seizures on meds and decided to go the diet route. Now after almost 4 years of being seizure free we have started to see activity again. In the meantime we had moved from So Cal to Indiana. We had been here for almost 3 years, but because was doing so well I had not pursued a new Dr (kicking myself for that). However, when started with activity again we saw Dr. Patel here at Methodist/Riley and he took one look at s medical records and did a referral for surgical intervention. What will come of this I have no idea, but it seems like surgery is being looked at for the non-life threatening seizures if they can pinpoint a focal area that will not do more harm by removing. If you have any questions I will do my best to answer. KANHOW@... wrote: Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option. At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.) Any insight would be greatly appreciated. Sincerely, Kandy ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Hi Kandy We have been accepted for surgery for and are just waiting for a date from Great Ormond Street Hospital here in the UK. Tests showed that 's seizures are confined to the left side of his brain, although we were shocked at the extent and he is going to have a full left-sided hemispherectomy! This is scary beyond anything we have experienced so far and the only thing that makes it bearable is knowing that we have tried every drug going and he is still seizing many times a day - the prognosis with the hemispherectomy is 50-60% his seizures will stop altogether and 80% they will be greatly improved - it is a chance we have to take and every day I both hope for and dread a letter with the GOSH stamp on it! Please feel free to ask if you have any other questions. Best wishes , , Jack, and (5yrs unilateral PMG) Re: Surgical Intervention Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option. At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.) Any insight would be greatly appreciated. Sincerely, Kandy ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 My daughter, Molly (3), had her right temporal and parietal lobes surgically removed about 18 months ago. We actually worked closely with Dobyns as the surgery was done at the University of Chicago. It was a VERY difficult decision, but Molly's seizures had reached the point where they could not be controlled by meds and were life threatening. As a result of surgery, Molly no longer has daily seizures. She occasionally has a small seizure when running a fever. But its important to know that my daughter has diffuse, bilateral PMG making her brain very abnormal. So although she had a minor seizure focus in addition to the major focus (that was removed), she was still able to have the surgery. In many cases multiple seizure focus areas will take you out of consideration for this type of surgery. The results have been life changing for our family. From my perspective, I would at least look into the possibility of surgery. Up until the moment they take your child into the OR, you can still back out. I'll gladly try to answer any questions. Good luck with your decision! Lorene To: polymicrogyria@...: KANHOW@...: Wed, 31 Oct 2007 21:44:31 -0400Subject: Re: Surgical Intervention Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option.At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.)Any insight would be greatly appreciated.Sincerely,Kandy************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 LoRene-- If I may hijack this thread... My little guy is almost 22 mos. and also has bilateral diffuse PMG. His anterior frontal lobe is the least affected. I'm curious about Molly's seizure history. What was the onset like? At what age? What type, etc.? Pardon me if I'm just being nosy ;o) but I don't know of anyone else who has a little one with a " diffuse " diagnosis. If you'd rather not answer, that's fine (and please excuse the inquisition above). , mom to 5, the youngest, Quinn w/ PMG, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 We are considering this for our son with moderate PMG. Just saw his new neuro today at Hopkins today and this was suggested. Donna(mom to Trevor) Re: Surgical Intervention Has any one in this group researched the option of surgical intervention to stop seizures? We met with Dr. Dobyns in September and he discussed this as an option. At the time, our daughter's seizures were fairly well controlled with Keppra. Little did we know how quickly things would go downhill. She started to have more frequent and severe seizures. We moved on to Depakote and we had 6 good days and they started back today. We are starting to see neurological impairment from the seizures as well which is affecting her academically. (She is 9 years old.) Any insight would be greatly appreciated. Sincerely, Kandy ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2007 Report Share Posted November 3, 2007 -- Have you tried NAET? http://www.naet.com/ A friend used this to diagnose and treat her highly allergic little guys. Much to her amazement, the youngest, who had anaphylactic response to dogs can now snuggle up to them with abandon. I don't know what might be going on with , but I'm sure your energy stores are empty and your patience is thin. Any chance he's having joint pain? I'm just grasping here, but if there's anything I can do, please holler. My email's above. Hugs, prayers, and blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 , We also did not realise Chloe was having seizures with the staring spells, and even when we were told , we more or less dismissed them as they were lasting only up to 5 secs and so we were not even sure they occured. The only signs of problems during the first few days were only apparent on hindsight. It took a few attempts to get Chloe to feed (from the bottle) She has never gained the ability to chew...only suck. Even the bottle feeding eventually tailed off at aged 4 - 5 when we eventually succumbed to the G tube (we have never regretted that, she probably would not be here without it. The other sign at birth was a small head size....this was recorded by our GP (general Doctor) but nothing said. As a baby she was just content to sit in her chair and watch TV. She smiled as she should at 3 months, reacted to us but did not move or reach out much. If you ever should come to the UK you are more than welcome to meet Chloe. Dom Re: Surgical Intervention LoRene-- If I may hijack this thread... My little guy is almost 22 mos. and also has bilateral diffuse PMG. His anterior frontal lobe is the least affected. I'm curious about Molly's seizure history. What was the onset like? At what age? What type, etc.? Pardon me if I'm just being nosy ;o) but I don't know of anyone else who has a little one with a " diffuse " diagnosis. If you'd rather not answer, that's fine (and please excuse the inquisition above). , mom to 5, the youngest, Quinn w/ PMG, etc. ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.19/1105 - Release Date: 02/11/2007 11:04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2007 Report Share Posted November 5, 2007 Hello, My name is and I am rather new to the group. My son was born in Northampton in 1999. He to had many problems with feeding and by the time he was a year old we left England to come to the states for our care as we just went from one waiting list to another to be seen by a specialist. He is now being considered for surgery at the Cleveland Clinic, we leave the end of this month for our consult. However, we are returning to England for the holidays and will be staying in Suffolk. I would enjoy the opportunity to speak to you more about your experiences, as we are just now really coming to terms with 's diagnosis. Chloe B wrote: , We also did not realise Chloe was having seizures with the staring spells, and even when we were told , we more or less dismissed them as they were lasting only up to 5 secs and so we were not even sure they occured. The only signs of problems during the first few days were only apparent on hindsight. It took a few attempts to get Chloe to feed (from the bottle) She has never gained the ability to chew...only suck. Even the bottle feeding eventually tailed off at aged 4 - 5 when we eventually succumbed to the G tube (we have never regretted that, she probably would not be here without it. The other sign at birth was a small head size....this was recorded by our GP (general Doctor) but nothing said. As a baby she was just content to sit in her chair and watch TV. She smiled as she should at 3 months, reacted to us but did not move or reach out much. If you ever should come to the UK you are more than welcome to meet Chloe. Dom Re: Surgical Intervention LoRene-- If I may hijack this thread... My little guy is almost 22 mos. and also has bilateral diffuse PMG. His anterior frontal lobe is the least affected. I'm curious about Molly's seizure history. What was the onset like? At what age? What type, etc.? Pardon me if I'm just being nosy ;o) but I don't know of anyone else who has a little one with a " diffuse " diagnosis. If you'd rather not answer, that's fine (and please excuse the inquisition above). , mom to 5, the youngest, Quinn w/ PMG, etc. ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.15.19/1105 - Release Date: 02/11/2007 11:04 Quote Link to comment Share on other sites More sharing options...
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