Rose-Would-Be-Twenty Rant

Okay. Here’s a little o’ what I mean when I assert that the Net is a downright mess:

The low glycemic index treatment (LGIT) is a dietary approach to treating seizures. I’ve come to think of it as an interesting-to-promising option. 

It'd been awhile since I’d last looked into it online (What's the latest? Is there cause to be more or less interested in exploring it for my daughter?) so I headed, virtually, to the MassGeneral Hospital for Children's Pediatric Epilepsy Program, home to Dr. Elizabeth Thiele and Heidi Pfeifer, co-developers of LGIT. 

To my dissatisfaction, there was no new news to be had. Not only was there no new news, on closer inspection I noticed that the content there "was last reviewed on November 20, 2006.” (This is a gorgeous and informative site, by the way, a production of WGBH [Boston public broadcasting].)  


2006! 

The site contains a section on seizure treatments that features a video about a fourteen year-old named Rose and her successful experience with LGIT. Sure feels outdated when it dawns on you that that little girl (it’s hoped) would be twenty now. Anyone think about following up on her story? Is there nothing the-hospital-as-presumptive-authority-on-the-subject could do to let me know whether or not it’s still in the LGIT business? Throw a guy a link, maybe? 

I know for a fact the aforementioned dynamic duo is still actively researching LGIT. That same other day, I came across an abstract entitled, “Low glycemic index treatment for seizures in Angelman syndrome,” which appears in the July 10, 2012 issue of the journal, Epilepsia. 

The results of their latest work? Encouraging. They suggest that LGIT is a promising treatment option…

But: not without qualification. The kids who were studied have Angelman syndrome. My daughter does not. So, what does this mean for her? Are there broader implications or applications? Where's the research heading? Did Harvard's recent (BAD) protein molecule breakthrough figure in in any way? 

Getting my questions answered is never half as easy as I think it should be. 

IS IT UNREASONABLE of me to expect to be able to find a decent answer to the question “What’s the latest on LGIT?” Or, similarly, to “What’s the current thinking surrounding intensive therapy?” (On my efforts to answer that -- and on my underwhelming findings -- see My Kind of IT: Continued.) Where do things stand with regard to aquatic therapy? The only thing I’ve ever found of substance is a benumbing Best Evidence Statement (BES[t]) put out by Cincinnati Children's Hospital over two-and-a-half years ago.

Is this the BES[t] we can do? 

What it'll likely take in order for me to connect with know-how -- pick any of the three approaches I just referenced -- I'll be able to apply directly to my daughter’s situation? Who knows. I’ll make some calls. I’ll spend hours trying to track down the people who used to be involved, hoping they’re still where they were and still in the same line o' work. I’ll try to figure out if this or that program is still being funded, or if research is ongoing…

What is this?

Well, aside from disheartening, it's: "always something." And patients and caregivers are always the last to know. 

What is this? 

Maybe it's time to realize the Net’s still a far cry from being as patient friendly as one would hope; time to spend less time online. Maybe it's time to rethink the mix of social tools we're choosing and using. Maybe it's time to try and do something to help make the Net a better place for knowledge.

I'm not sure.