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cluster seizrues 8 weeks post-op

My 10 yr. old son had a R frontal lesion (cortical dysplasia) removed on Feb. 9th. Things were going pretty well till Mon. He had 4 small auras the night before which worried me, but tried to remain positive. He woke up with simple partial szs. occuring every 3-4 min. thru the entire day despite giving ativan 3 times. We gave a bolus dose of his normal drug in the afternoon per drs. orders and he fell asleep around 7:30. He woke up Tues. with the same thing only 2-3 mins. apart. We were in the E.R. at 11:30 after another dose of Ativan at 8:30. We came home yesterday and he only had 2 szs. all day, but pretty tired. The Dr. said that his brain is still healing and that he still feels hopeful. He said he's never had a pt. do worse after surgery. I feel like we are going backwards because he's now on an increased dose of trileptal in the p.m. Has anybody out there had this kind of set-back after surgery and still had a good outcome? I'm considering an improvement a good outcome at this point. At first of course you hope for the best , but we knew the odds were only 50% for sz. freedom with drugs. I am just very discouraged right now and wondering how I can keep going. I so badly wanted a new lease on life for Gabe. I'm so scared of a lifetime of szs. for him! Gabe has been thru so much so far that this all seems so unfair. I try to remain upbeat, but he is so intune to the slightest change in me. Just needed to vent. Thanks Cheryl

Comments

Re: cluster seizrues 8 weeks post-op

I just wanted to wish you my very best and hope and pray for improvement on your son. Hang in there. I wish I could say I know how you feel but I cant other then relating to the seizures. In my case, its my husband with the siezures...and he cant be a candidate for surgery because it will make his short term memory issues far worse. Hubby has scar tissue on the left temporal Lobe of his brain from a car accident that occured 18 yrs ago where he suffered a severe head trauma. 16 yrs later POst Traumatic Seizure disorder manifested....we were so hopeful when we found out a freind of ours was cured of her seizures after having brain surgery 9 yrs ago; when we investigated the surgery they said HUbby is at high risk of more brain damage so hes not a candidate for the surgery.

Sorry Im rambling...anyway, may God bless you and your family and I hope soon your son with reap the benefits of his long term healing process. Sending you cyber HUGS!

Re: cluster seizrues 8 weeks post-op

My daughter is 6yrs old and has had seizures from birth. She has been diagnosed with Lennox Gastaut. Back in Sept. She went from 1-2 seizures a day to 40 daily. Now she no longer can walk and has a feeding tube. She is currently on felbatol and the ketodiet. The only option left in the VNS therapy surgery. We are just waiting- which seems like forever when you child is continually having seizures everyday. I get so depressed and sad for my daughter, having to live with this. Sometimes I just don't want to get out of bed but I keep going because she deserves the best care and what would she do without mommy. What helps the most for me is just keep looking forward and not think about how well she was doing but to do everything I can to help her now- Alot of praying too. I trust in God completely to get us through this- it's so miserable I couldn't do it without Him. Every day I expect a miracle and I won't give up. But we are looking forward to VNS surgery and if it doesn't help I don't know what we will do. I may be in your boat. We'll pray that it's going to get better and once he's fully recovered from surgery thing will improve. I know after any kind of sickness or stressful events my daughters seizures get worse.

Re: cluster seizrues 8 weeks post-op

Hi Cheryl,
Actually, seizures are common. I had a patient who was admitted 3 times for more than a hundred sz total after his surgery. That was about 6 months ago, and I here he's been seizure free for 3 months. It takes a while for the brain to return to normal. Also, the icky part, is if your brain is used to having seizures, and there's nothing causing it, it still has them. Kind of like phantom pain. The limb isn't there, but your brain still says that it hurts like crazy. Give it all time. That's the hardest thing I've ever had to say to a parent, but it's true. Good luck.

Jen

Thanks Jen for your words of

Thanks Jen for your words of encouragement! I have a renewed sense of hope right now. Let me ask you-how long after the surgery did he continue to have szs? I just need to know that there's still hope even 9 weeks post-op. Just curious, are you a nurse or Dr. that works with neuro pts.? Do you happen to have a child with szs or do you know someone with epilepsy? Thanks for your time.
Cheryl

Re: cluster seizrues 8 weeks post-op

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