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 Sure feels outdated when it dawns on you that that little girl (it’s hoped) would be twenty now.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.

Elizabeth Thiele Would Know

Not only am I not a physiatrist, I’m not – contrary to what my diploma suggests – much of a scientist, either. I know just enough bio-chem and human physiology these days to be dangerous. Keep that in mind when I tell you:
 
I just came across (great?) news that researchers from Harvard Medical School and the Dana-Farber Cancer Institute have learned how a protein called BAD teams up, in certain instances, with potassium ion cell-channels in the brain to effectively SHUT DOWN THE ELECTRICAL STORM ASSOCIATED WITH EPILEPTIC SEIZURES. Their findings stem from what was known previously of the ketogenic diet (used for years to protect against seizures) and recent experiments tied to the ways in which glucose and fat byproducts are metabolized in the body.

This could represent a BIG, BAD BREAKTHROUGH in that it:

1. Appears to explain the molecular mechanics behind how and why the ketogenic diet works.
2. May lead to the development of new anti-seizure treatments.

The news was to have been published in the May 24 issue of the journal Neuron. I’m anxious to learn how it's been received, one month in.

I have an interest in both the ketogenic diet and something called the low glycemic index treatment (LGIT) -- the latter of which I believe could be a more palatable alternative, literally and figuratively, for my daughter. Elizabeth Thiele, professor of neurology at HMS and director of the Pediatric Epilepsy Program at MassGeneral Hospital for Children, was one of the developers of LGIT. She's also the wife of one of the BAD /potassium pathways researchers. I found this: Researchers Identify BAD as Key Seizure-Suppressing Protein while searching her name.

LGIT is similar to the ketogenic diet in that glucose plays a key role. With the ketogenic diet, you try to minimize the amount of glucose available for metabolism by eating a high-fat and low-carb diet. (using fat byproducts, a.k.a., ketone bodies, to fuel the brain) LGIT, on the other hand, is thought to work primarily via maintaining stable blood glucose levels.

If I’ve got those facts right, I'm wondering now: 

What, if anything, does this new research do specifically for LGIT? Does it validate it? Invalidate it? Offer additional hope? Open up new avenues for improving (the) treatment? 

I’d welcome your input!