Right Frontal Lobectomy

Hi Shelby, What a scary situation initially. I can't even imagine having everything happen so quickly. It's like you didn't even have any choice with the surgery because he was seizing so bad. It's like surgery was the only option and thank God for that. Your life must have been a living hell. I can't imagine how you even coped during that period of time. Do you have other children? How long was he in a coma? What's amazing is how well he seems to be doing without the frontal lobe. Do you have his personality back? That's what scares me the most is that I will lose my little boy's personality or the heart of who he is. We didn't even know about Gabe's cortical dysplasia till Mar. 06. He was dx. in april 03 and went 2 yrs. without szs. on only 1 med. When they tried to wean him off he started to sz. again. They put him back on meds. and really never got control of them, but not to bad. In the spring he slowly worked his way up to approx. 70 szs. a day while trying a new med. Since then, we have not gotten full control. He had an M.R.I. in March because of all the increased szs. and they found the dysplasia, which had been there 2 yrs ago, it just wasn't picked up becuase imaging has improved so much. At that point they said we would be a candidate for surgery. Boy, were those scary words!! He had a video E.E.g. in July and everything confirmed the local lesion. All Gabe's paperwork was sent to Children's hosp. in Seattle and now we are just waiting to see when all the prelimanry testing will take place. Gabe's lesion is really close to the motor strip and that is a concern for the Drs. but I guess they won't know till they do the mapping.Did they say anything to you about the motor strip and the potential risk with that? It's all very surreal and I've been a little stressed to say the least. Gabe has simple comlex partial szs. that last about 30 secs. He has 1-2 a day with maybe a day or two off in between. He isn't too bothered by them at this point-I know they trouble me so much more. We are on our 4th drug, which is very early in the process compared to lots of others. He's on 100mg.Lamictal 2x a day and 600mg. of trileptal 2x a day. So far school is going pretty good. The a.m. dose really tires him out so I wake him at 6;30 and let him go back to sleep then wake him up and hopefully he'll be ready for school. I'm so glad to hear your son has progressed along so well. Do the Drs. expect a full recovery? Great to find someone who understands. Thanks for your response. Cheryl

How wonderful to hear about your son. I know what you have been through. I still get stressed if I think about what my son has been through and I think he is a miracle child and thank GOD. My son is 5 years old and had his right frontal lobe removed when he was 4 1/2 months old. He had cortical dysplasia and uncontrollable seizures. He is doing great. He has been seizure free since the operation. He is in kindergarden. He has low muscle tone and has difficulty with fine motor skills. He goes to OT and PT once a week. We are trying to get his school to provide him an aid to help him focus and stay on task. He had some some difficulty with inhibitions and keeping his hands to himself. He has been diagnosed with sensory processing disorder. He is in a main stream class. The school is trying to say that having an aid would be more restrictive than special education. He is very bright and doesn't need any remedial help except in writing and keeping up. How does your son feel about having an aid. Do the other kids say anything or tease him? It sounds like his school is very supportive. Thanks for sharing your sons situation. :-)