on raising awareness - take III

The comment below is exactly why I am shocked (insert - astounded...grieved...disturbed...and the list goes on) that The Child Neurology Foundation did not come to us to glean ideas for an Infantile Spasms Awareness Week.


"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."


Thank you, Sinead, for articulating so completely everything I too would be looking to gain from an IS Awareness Week.


Anonymous said...

Week? WEEK? Most catastrophic (and many not so catastrophic) illnesses and afflictions get a month's attention. And so, whoever posted that this will be a discussion over fruit and cheese, and may I add cocktails starting at 4:30, is right. I'm getting more sick with anger with eaxh post I read from the "IS Family."


blogzilly said...

Sinead does have a way of putting into perspective don't she?

Sorry about my lack of blogging/comments this week. I'm just in a mental state of something, just not sure what yet.

Katie said...

I feel so lucky that I had an astute pediatrician who referred us for an EEG within a week of discussing symptoms.

Sinead said...

I can't really see an awareness week fixing healthcare and insurance issues but I agree with myself about everything else.

I had a good conversation with Mark Leonard today and he made some valid points worth sharing.

His perspective is that this is the start of something bigger but the Child Neurology Foundation is small and under resourced and had to start small. Their goal is to start by producing educational materials so that when a new parent gets a diagnosis they have more than the blogging community to get answers from. They want to have a leaflet, DVD and website that has neurologist approved information on the condition. Think about it for a moment. This is a good thing. When we got our diagnosis I asked the nurse for printed materials and all she could give me is a printed sheet about what to do if your child has a tonic clonic seizure. Worse than that, both the yahoo group and the IS forum require approval so I couldn't even get there to get more information. All I could find were some real horror stories of possible outcomes. It was frightening and not the best introduction to the condition. So I think educational materials will be useful as a starting point to help parents on their journey.

I shared with him the reason that people are angry. When people in the community heard that this week was happening there was initial excitement. People talked about even travelling to it. But we couldn't find information, there was no agenda available and then we noticed that it was sponsored by Questcor who, honestly, many people despise because they feel ripped off by drug pricing. Different conversation for a different day.... I explained that the press release mentioned parents as one of the targeted audiences but that the lack of information made us feel marginalized. As parents of children with a rare disorder we don't hear about this in the media often and we want to feel more is happening. If the press release had also reached out to the parent forums and the epilepsy foundation and explained that year one's plan was to deliver educational content and that they would like to engage parents in year two to expand the programme, people might have felt like this was also geared towards them.

A lot of the money spent on research and education in the medical field in this country comes from drug companies. That is reality. Its nice to see someone wanting to sponsor IS awareness and I suggest that we should seize the opportunity to raise as much awareness as possible because these kinds of opportunities do not come around very often.

We have a chance to build on this and improve it and I think it is better than waiting for the next big sponsor to roll up.

Mike Bartenhagen said...

"They want to have a leaflet, DVD and website that has neurologist approved information on the condition"

Isn't this what is already avaialble on the internet? I am sure for liability reasons it will be a very sterile, medical type of brocure. Parents will still head to the net for the real story from real people.

BTW: This is funny: but I agree with myself about everything else.

Been there.

I really don't think it's about money. The forum on the infantilespasms.com website cost $20 a year, the Yahoo forum is free. I would be very confident that if you polled parents and asked where they have received the most valuable info in regards to IS, one of those two names would come up.


MJStump said...

I'm not sure what to say or think. I was excited to read that there will be an IS awareness week, but then not so thrilled when it was to be tied into a convention with people that are already fully aware of it all.

Yeah, it sucks because it seems that this is about added PR for Questcor, but then to know that they are trying to start small and just add on making it better is more than what we have now.

Sinead, I love your list of bullets, especially about "No parent should have to diagnose their child on You Tube." mainly because that is pretty much what we did before we got Kylie into our pediatrician. Though I was naive and said our baby doesn't look like the babies in the videos, so it can't be that...it was, she just hadn't reached that point yet.

I want everyone in the world to know what IS is and what it did to our family, and what we went through, and the fears we still have.

My husband found Broc's dad in his research our first night home from the hospital, and Mike talked to Matt and lended an ear and support. Mike it was thanks to you that we found more info, and encouragement that no matter what happened, we would get through it one day at a time.

Info and education is huge, but so is the support that we lend one another. I am rambling and not sure that anything makes sense, but I do hope whatever happens and develops with ISAW is purposeful and helps at least one family, and then another, and so on. Not another moment lost right..or something like that. Too bad I have been pretty lost since this entered our lives.

Katy said...

I'm sort of in a bad mood today so I've been reading without commenting all over town.

And here I read this and I am sorry but these last three posts are so incredibly, rock-awesome that I just had to post. And, in fact, I feel a little happier reading what all these smart, apt parents are saying about IS and the BS that surrounds it.

Holli said...

I'd like to say I feel fortunate to have been immediately referred to the nearest children's hospital ER. And that ACTH was our first drug. And that NORD picked up the tab for us. Now, had the ACTH actually worked, it would have been protocol perfection.

And may I add...any parent getting thrown into the whirlwind of an IS diagnosis -where quick treatment is supposedly key, should never, EVER have to focus so much attention on how they will come up with funding for THE FIRST LINE TREATMENT!!! Maybe a little different if it were experimental, but it's not. Instead of learning more about the disorder, we were forced to deal with insurance red tape, thoughts of 2nd mortgages, and grants to save our son while still in the hospital receiving the diagnosis. So much stress for a treatment with it's success statistics. With those stats, they have no business profiting so much from it. I think of how much money they made from us alone and my son is still seizing a year later. Makes me sick.