Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?

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Does anyone have any knowledge or experience with cortext dysplasia or cortical dysplasia? This is what my 10 yr old son has now been diagnosed with pending an mri - he recently had a pet scan that the drs feel shows this. He was diagnosed with frontal lobe epilepsy 4 yrs ago. He is now a surgical candidate and I am wondering if anyone has went through this already and what their outcomes have been like. Thank you very much! Jack's Mom

Comments

Re: Re: Re: Experience with Cortext Dysplasia/Cortical Dysplasia

Submitted by cheryl doran on Tue, 2006-08-15 - 11:22

Hi Shannon, Gabe has done alright in school- it takes him ahile to grab ahold of something new, but then he is fine. I really don't know if having epilepsy has anything to do with his learning style since he has been on drugs since the end of kind. Might be the drugs- who knows? Last spring he was out of school for awhile and started school late many days because of the new drugs they were trying.Actually, up until last spring, he didn't have any problems with sz. or school, everything was under control. It was spring of 06 when he just began having sz. again. They started him on new med. and he was so tired that he really couldn't function early in the morning. Last spring was so tough on Gabe and me. I finally started to wake him up at 6:00 a.m.to take his med., then he would go back to sleep and be ready to go at 8:30. He missed alot of math since it was one of his early subjects. His teacher was a jewel and really tried to help in any way. I'm really hoping this coming year will be O.K. If he does have surgery I know he will be missing even more school and I want him to feel confident about it. Gabe has simple partial seizures. He will turn his head to the left and extend his L. arm out a little. He is a little slow to respond during the sz. but he can even manage to stay on a bike during one. Most people don't even notice he's having one, except during like basketball or soccer. They last about 30 sec. Right now he has been having one a day for the last month. They want to hold off changing any meds. till Seattle's work-up. Gabe knows about the surgery becuase the Dr. spoke about it in April infront of him. I was upset about it and just said we weren't going to make our minds up till later. After the video E.E.G. in July, the Dr. spoke about it indepth while Gabe was present. We began to talk to him about the surgery quite honestly after the Dr. spoke. It was very emotional for siblings,parents, and Gabe. He said he didn't want it done and he said he was really scared. We told him that we were really scared too. We have had lots of discussions about it since and about 3 weeks ago after another Dr. appt. he said he was ready to do it. We are now to a place where we just want to get it done. We just feel really lucky to even have this option. Gabe's dysplasia happens to be very close to his motor strip, so that is definetely a concern. I don't think they will really know how close till they map his brain. My concern is they will go thru this intrcranial monitoring and mapping and find out it's to close to the motor strip and won't be able to do anything. That will be a real downer for us all. I will talk to Gabe about your son and see if he would like to e-mail your son. I think it would be really neat for both of them. Does your son play sports? Where do you guys live? Do you have other children? So glad to have someone to talk with. Thansk for you reply. Cheryl

Re: Re: Re: Re: Experience with Cortext Dysplasia/Cortical Dyspl

Submitted by shannon1220 on Sun, 2006-08-20 - 21:55

Hi, yes my son was in taekwondo but had to stop due to all of the problems hes been having with his seizures. We are hoping that someday he will be able to go back & get his black belt (hes only 1 away from it). We live just outside chicago & he is my only son, I do have 2 stepchildren that do not live with us though. Over the last week my son has really gotten worse, total upper body convulsing, very odd behavior, rolling eyes, even making spitting noises,etc. Ive read where the dysplasia can cause a lot of this due to where its located so where before i was terrified about him having surgery, I am now praying for it to come very soon and hoping with everything i have that he will be given at least some relief from all of this, school is supposed to start in 2 days & now he probably will not be able to go, which makes him very sad because this year he will get a locker & be at a new school - hes going into 5th grade. I wish kids would be more understanding, but I know most of them are not educated enough in epilepsy,seizures or any disabilities for that matter, to enable them with the power of patience & compassion. We havent told jack yet about the surgery but im waivering on telling him very soon. He has been feeling very upset lately over the things he says,does,etc. that he cant control. Is your son scheduled yet for brain mapping? Jack's admission date is oct.16th & then if all goes well, he will have the surgery on the 19th or 20th. Please keep in touch as things progress & i will do the same. My thoughts are with you & your family - I truly know what a difficult time this can be - i am keeping high hopes that within a few months Gabe & Jack will be seizure-free and on their way to having a fresh start at life, Shannon

Re: Re: Re: Re: Re: Experience with Cortext Dysplasia/Cortical D

Submitted by cheryl doran on Tue, 2006-08-22 - 21:12

Hi Shannon, so sad to hear Jack isn't doing well with his szs.lately. I can't imagine what your going thru. It is so hard to watch your son sz. so often and it sounds like his szs. are pretty pronounced. I'm also saddened to hear that he might not make it to the first day of school-how awful! I'm sure it's almost unbearable to watch your son go thru something like this. I feel bad that he had to give up taekwondon-he's obviously very talented and driven to have gotten as far as he has. Are you trying new drugs at this time or just increasing his dose? What is he on? How many sz. a day is he having right now? I know what you mean by being so afraid of the surgery in the beginning and now you just can't have it soon enough. Have the Drs. said what Jacks' odds are that this surgery will work for him? I sure hope it will work for us both. We are just waiting to hear from the Drs. in Seattle as far as our first step. We know he will have the intracranial monitoring(Mapping and possible surgery) we just don't know when. The waiting is wearing on me- I just want to get this over with. Did you already have the initial consultation? Did Jack have a Wada test or any neuro.phsych. testing done? I sure hope and pray that Jack is doing better. It is so hard to just sit and watch your child go thru such difficult times-I know I feel so powerless and just overwhelmed at times. Cheryl