Update on Andrew after 72hr VEEG

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Hi everyone!
If you've followed Andrew's story, then you know that he was diagnosed with BRE in Feb of this year after a status epilepticus event and hospitalizaton this past Dec.

After consulting with some wonderfully helpful members on here, I sought out and found a pediatric epileptologist recommended to us by a neurologist friend of my husbands. After a thorough evaluation in April, the Dr agreed that Andrew needed more testing so we could find out why his development had stalled and why some of his motor skills were regressing.

Last week he was admitted to a near by children's hospital for long term VEEG monitoring for 4 days/3 nights. After the first night, the Dr came in around 9am, sat me down and we talked for over 80 min about what they had found out. We talked in depth about what this meant for Andrew, and the treatment options we would try. He was diagnosed with Epileptic Encephalopathy of Continuous Spikes and Waves during Sleep Syndrome (ESES) Greater than 90%. This is a rare childhood epilepsy that makes up 0.2-0.5 of all childhood E. So much for having a benign epilepsy. He is now also diagnosed with absence seizures. Something new, but I suspected he was having them.

While in the hospital once diagnosed, he had an emergency neuropsycological testing done. He was coded with severe medical disability. He will have this testing again in another 3-4 months to see if he's declining in any areas, or also, to see it there is an improvement from this baseline test now that his CSWS is being treated. He's also scheduled for an MRI this friday. So far his medical team has been excellent. I couldn't ask for better, more thorough care for our son.

He's on valproic acid since Feb, and now an ospolot trial for the CSWS. He will have ambulatory EEGs every three months for a while to monitor the CSWS and treatment adjustments/changes if needed.

Here's a good article that describes CSWS for anyone who's interested:

http://http://www.epilepsycuring.com/2012/02/what-is-continuous-spike-wave-in-slow.html

I wanted to thank you all again for the help and support you have provided to me. CWE is a great place. If any other parents/caregivers read this and also have a child with CSWS/ESES and would like to connect, please do not hesitate to message me.
 
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Thank you for sharing Katy. I am sorry you and your kid are going through this. That said, I think I speak for us all when I say our thoughts and good wishes are with you.
 

masterjen

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Thanks so much for taking the time to update, KatymomtoA. The doctors at the Children's Hospital must be an amazing group to have picked up on such a rare disorder. Wishing you and Andrew all the best, and I hope you will continue with the updates so everyone here can learn about this rare condition.
 
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