Tag Archives: medicine

Article: Gene Therapy Coming of Age?

Experimental gene treatments are being used to treat neurodegenerative rare diseases. I’ve posted before about how viruses are being used to encode new, “corrected” genetic strands in patients with diseases of the brain.  Now, scientists are using these viruses to treat … Continue reading

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Updating, Updating, Updating All The Things

I am merely putting this post here as a placeholder as we get news about the day.  Sort of a liveblog of the parade of doctors as they come out.  Bookmark this page and I will update as I can. … Continue reading

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Day One

Last night was a bit of a rough night for Armand.  He threw up a bit during the evening, then woke up biting his lip during the night, followed by five of his “scary” seizures during the night (his first … Continue reading

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Rx for ASH

Just in case we get some parents or family members of GM1 children looking for help, I thought I’d post an updated summary of what El Jefe is currently taking daily: Treatment 3 x 100mg Miglustat (Zavesca) 1 x 600mg … Continue reading

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Days 1 & 2 In Review

Been quiet on the blogging front because for the most part a lot of this is old hat: fly, land, hotel, Target run for food, Day 1 meeting with Drs. Whitley and Utz, Day 2 meeting with neurologist, Day 3 … Continue reading

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Ketosis, Osmosis, Halitosis,…

After last week’s adventures, Armand’s aunt (a NICU nurse) was able to help us “fix” his G-tube by performing her first “button” insertion, with no complications. We’re in the process of adjusting Armand’s feeding tube formula.  He has been on … Continue reading

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Day One

Hey, look, two posts in one day — assuming I finish this tonight.

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