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Corpus Callosotomy Surgery
Tue, 12/29/2009 - 01:43My 4 1/2 year old son, Austin is being reviewed for a corpus callosotomy. He was diagnosed at 6 months with Infantile Spasms/West Syndrome and has now graduated to Lennox-Gastaut Syndrome. Despite a brief month during a run on the Keto Diet, he has had daily seizures. We've tried every drug and treat, aside from a VNS and a corpus callosotomy.Austin also has major developmental delays and has been diagnosed with autism.
My question to parents and/or individuals with epilepsy is what was the experience like after a corpus callosotomy. Austin was "normal" up to his first seizure. He was meeting all his milestones and had no signs of delay. Our prayers are that this surgery with resolve the seizures and allow his brain to restore itself.
Any info is greatly appreciated.
Thank you....Sara
Comments
Re: Corpus Callosotomy Surgery
Submitted by sarahulstedt on Fri, 2010-01-01 - 14:48
We have tried them ALL! It's been a long 4 years and nothing has really worked. ACTH took them away for almost a month. One his 1st birthday, he got chicken pox & they returned when his fever spiked 105. The keto diet was working as well, but then he was only awake for a few hours a day and had no quality of life.
When I say we're at the end of the treatment list, I truly mean it. It's either VNS or CC and right now we're leaning for CC since he's so young.
Sara
We have tried them ALL! It's been a long 4 years and nothing has really worked. ACTH took them away for almost a month. One his 1st birthday, he got chicken pox & they returned when his fever spiked 105. The keto diet was working as well, but then he was only awake for a few hours a day and had no quality of life.
When I say we're at the end of the treatment list, I truly mean it. It's either VNS or CC and right now we're leaning for CC since he's so young.
Sara
Re: Corpus Callosotomy Surgery
Submitted by Nerak95 on Sat, 2010-01-02 - 21:11
Sara,
I think your son has the best shot with the CC, mainly because he is so young and his brain is still immature. Recovery will be easier than it would be in an older child/adult.
My daughter had the VNS and it wasn't effective. It was implanted in 2002 and by a outstanding neurosurgeon, he was able to remove the coil with minimal problems.
Best wishes for your decision! Keep us posted.
~Karen
Sara,
I think your son has the best shot with the CC, mainly because he is so young and his brain is still immature. Recovery will be easier than it would be in an older child/adult.
My daughter had the VNS and it wasn't effective. It was implanted in 2002 and by a outstanding neurosurgeon, he was able to remove the coil with minimal problems.
Best wishes for your decision! Keep us posted.
~Karen
Re: Corpus Callosotomy Surgery
Submitted by Nerak95 on Thu, 2009-12-31 - 00:52
When you say you've tried every drug and treatment, have you tried Felbatol, Banzel, Vimpat, Clobazam and Vigabatrin? I'd hate to resort to such a drastic measure of a CC until you've exhausted all possibilities.
~Karen
When you say you've tried every drug and treatment, have you tried Felbatol, Banzel, Vimpat, Clobazam and Vigabatrin? I'd hate to resort to such a drastic measure of a CC until you've exhausted all possibilities.
~Karen