Tuesday, September 17, 2013

Vagus Nerve Stimulation

 photo 0f1fdaf9-8cee-4e39-ae99-5863a585a06d_zpsbc529e5c.jpg 
[Queen Elisabeth, coming out of a seizure.] 
Ever since she was 6 weeks old, Elisabeth has suffered from epilepsy. We have tried everything from drugs to diets, but there has been little success in controlling her seizures.

For Elisabeth, seizures have drastically effected her life. Once upon a time she could crawl, she could eat, she could say a few words. But seizures have stolen those triumphs from her. She is no longer mobile, she can no longer eat, and she can no longer say those precious few words (mama, home, and again.)

Lately though, seizures have done more than simply steal Elisabeth's developmental milestones - they are threatening her life. With each seizure (every one to two hours) she stops breathing. And there are times lately where she can't quite remember how to breathe afterwards. She chokes and coughs and gasps and struggles to find that familiar pattern of inhale, exhale. Last night, as she seized, there was terror in her eyes. As it came to an end, Elisabeth vocalized an almost panicked sound - as if saying, "help me".

Needless to say, something has to be done before a seizure steals her away from us.

Last week I traveled with Elisabeth to Spokane and met with one of her neurosurgeons. Together we decided that the next step is to try Vagus Nerve Stimulation (VNS). A vagus nerve stimulator is sort of a pacemaker for the brain. A device is surgically placed in the chest with a wire connecting to the vagus nerve in the neck. The VNS then sends regular pulses of energy to the brain. It is not clear why this works, but in many cases (about 50%) a reduction in seizure frequency and intensity has been noted. Maybe, just maybe, Elisabeth will be in that 50%!

We are working on scheduling the surgery right now and are hoping it will be sometime in the next few weeks. We would love to have it done before we head back to Ethiopia.

Details to come!

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