Friday, September 02, 2011

The Collectively Familiar River

Denial…any of you whom still want to tell me I am here can kiss, perhaps my middle finger.  In light of my last post, prognosis for the type of epilepsy Ava has should be quite clear.  Stick you head back in the sand if not.  As nutty as you may find this, hooray for potential diagnosis/prognosis!  I have been hoping for this opportunity, a name to describe what chips at my sweet Ava, thus giving me the power to finally properly fight it...For entirely to long.

I have been fortunate enough to speak by phone with the mom which shared the story in my last post.  She is gracious and willing to share all her good info on Cleveland Clinic MD’s, their schedulers and nurses, research articles, yahoo groups, and any other ‘been there, done that’ she has to offer.  PRICELESS!  We will have coffee should I ever get to the Omaha area again.
Also, TCH in Denver has a slot the 29th of this month with an Epileptologist visit for Ava.  Really this has only taken about 4-years to accomplish.  Not one TCH neurologist has ever referred us to the next level (even after 4-days in the hospital after an attempted Topamax wean), it took me calling and saying we are heading to Cleveland because you suck at this to arrive here.  It’s a different blog for a different day.  I will say that I am happy to make this connection because Ava needs a good Epileptologist, also one to follow the protocol the Cleveland Clinic prescribes, should we have to go there for proper treatment. 
The naturopathic MD’s are still a big part of the mix, helping me steer this colossal ship.  There is some really good stuff in place, we have ruled out food intolerances, allergies, etc.  We have also explored other neuro advice and these folks continue helping me navigate this foreign medical land.
We have recently entered the world of sharps containers.  Ava is starting a methyl b-12 injectable called Enhansa from a compounding pharmacy in the Cleveland area, Lee Silsby Compounding Pharmacy.  This will complete our customized "mitochondrial cocktail” with an additional attempt to fix the TOP of Ava’s methylation process.  We anticipate future IV injections of Glutathione to fix the BOTTOM theoretically shaking out all the garbage gone wrong in-between.  The notion prescribed is sensible, not too invasive and hopeful in regards to snags that are feeding into this ESES/CSWS pattern and other related issues we have been riding out the last 6-years.
What does this mean?  Nothing certain yet but a train ride to answers has been set in motion; that is beyond exciting when you have been standing in line at the terminal for what feels like an eternity, at least Ava’s lifetime.  This is a short and sweet post on complicated ideas but serves the purpose of memory down the road, check back for different stuff in regards to the details outlined here.
I now know more about biochemistry as it relates to Ava, than I ever desired to know about anything outside my personal interests.  The processes "in between the top and bottom" I speak of are all those lab reports you other neuro-parents see neurology clinics running over and over, in regards to amino acid processes in your body.
In short, I don’t like this shit and only desire to understand it at the level I must for Ava.  Hats off to all you biochemical folks out there; you have big inquisitive brains.
Side bar: Kindergarten is grand, Ava has thrived this week.  Enjoy your holiday!

1 comment:

Deana said...

Hope the answers keep coming for you.

Max has had hydroxocobalamin injections since he was 4months old. It's what largely keeps him alive, as his body can't process vitamin b12.

Pasco takes sharps containers and disposes of them for you...because there are seriously no places to take sharps containers for individuals!