Before I continue my conversation about IS awareness week, just some quick business.  Marissa has had some enhanced seizure activity in recent days, more drops, more absences, general crankiness.  We’ve got parameters to head to the hospital, and were told that if we were any other patients, we’d have to go now.  So, things are a bit tense here at the house.  If we don’t immediately respond to emails, that’s why.

Anyway, as teased yesterday evening, I had a very productive discussion with Mr. Mark Leonard of Reach The Next Level.  He’s the press contact for the CNF and Questcor’s infantile spasms awareness week.

The plan is simple for year one, but I was informed that the intent is to enhance and enlarge the programs as years go on.  The first wave of awareness is a CNF produced website, a handout pamphlet, and a DVD, all intended for new diagnosis infantile spasms patient caretakers.  These materials are intended for neurologists to hand to parents upon diagnosis, rather than setting them loose on their own to figure out what the deal is with this disease and it’s prognosis, and it’s going to cover treatment options and likely scenarios for treatment.

This is a bit of an abbreviated post, as we’ve got about a thousand things to do even before Marissa wakes up after her mostly sleepless night and we see if we’re off to the hospital yet again.  The conversation with Mr. Leonard was a fruitful one, and the overarching theme of the conversation was “what do you, as an IS parent, want to see from this campaign.”

Sinead, a commenter here and on Danielle’s blog spelled it out pretty well.  I’ll repost it here, but the original thread is linked here.

"What do I want from IS awareness week?

No parent should ever have to diagnose their child on YouTube

No parent should be told that their IS child just has colic, reflux or a delayed startle reflex.

No parents should be offered the choice between keppra and depakote as the first treatment

Neurologists should put out an agreed statement on treatment protocol

IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with.

EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps.

All people with IS should have access to the same quality and cost of healthcare as I am lucky to have."

It is overall a good bullet list.  Some of the points, while perfectly valid, aren’t really IS awareness week topics I don’t think.  Healthcare reform isn’t really an IS specific issue, and limited funds allocated to awareness probably shouldn’t be spent on that.  Getting Neurologists to agree on a common treatment will be about as effective as herding cats.  However, there are two key points in there that I addressed with Mr. Leonard.  I addressed point number 1 and 5 the most, and it’s the point of this blog.  All front line medical responders like ER staff and pediatricians need to be aware of this disease.  Mr. Leonard agreed, and hoped it would be on the agenda in the future.

I’ll be honest.  I’m still not thrilled about the path so far, but the information I do have now is better than what we had yesterday at this time.  I do know that the press release was crafted before the DVD/Pamphlet/Website triumvirate idea was fully crafted, so as a community, our information wasn’t great.  Going forward, whoever has to run this awareness program really should hop in the trenches with us, see what we have to deal with, read our pharmaceutical related rants, and learn about the families as well as the children.

I’ve invited Mr. Leonard to come take a look here, and hop down the rabbit hole with us and it looks like he’s been by a few times already.  If you have anything to say, you can leave it here in a comment.

To the community:  We’re all angry about something with this disease.  I’ve got my own issues with Questcor, Lawyers, and hospitals.  This is a first effort for awareness other than the lot of us bloggers and parents screaming in the dark about it.  I’m not asking you to not be angry, or even like Questcor as a company.  I certainly never will.  Let’s not fool ourselves- a bootstrap effort for IS awareness will only get as far as the funding.  Anybody have $100,000 to paypal me so we can make a 501C3 nonprofit and take out television ads and magazine ads?  No?  I’ve said it before, we have no Curt Shilling, we have no Jenny McCarthy, no Jerry Lewis.  Plus, I suspect as a lot, we’d rather spend our money on our children’s care, rather than a campaign for general awareness.  This campaign is the best funded effort for IS awareness and while it isn’t what it needs to be, let’s hold them accountable for how this advances through time.  Let us all continue to push to be involved in the campaign and what it entails.