So....WOW!

>> Sunday, May 2, 2010

I read this the other day and was STUNNED by the implications. Just STUNNED I say. I will link to this in several places because I find it to be VERY important for A LOT of people affected by Autism, Epilepsy, ADHD as well as Fragile X.

Promise seen in drug for fragile X syndrome

We thought Bug had Fragile X. We were almost so positive that we would have put money on it. He had A LOT of the characteristics and I have a nephew that does as well, only no seizures that we know of. With ALL of the boys in the Hultgren clan having speech issues and some other delays, it was a red flag. But his genetic test showed NO such anomalies. While it was a relief, it was also a source of great frustration.

His EEG's have shown various different patterns including all over brain activity, sudden and not unexpected, however the synapses fire so intensely he has seizures. Or so we originally thought. His last EEG was different, we think. But we were told he has slow Alpha Waves and we are pretty sure that is bullshit (insert clean word if you like). We doubt the lead that he pulled off got attached properly because he does NOT show signs of slow Alpha's. Denial? Hi, I'm Annette.

Regardless, this drug has the potential to help so many different neurological issues it's remarkable to think about it. If this drug can not JUST slow down synapses, but regulate them like they think...OMG. Just OMG. It has potential to help Bug a lot. I will be doing some more research and maybe posting about it unless of course, I get distracted again. By slowing down and regulating it would help curb those peaks that cause Bug's seizures. IN THEORY. Can I talk to his Doctor about this? Doubtful. he still hears: Ketogenic Diet and VNS when we have said NO to those twice.

I will be finding out how to get him into The Barrow Neurological Institute in Arizona.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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