Awareness

OCTOBER 11TH-17TH Providing pediatricians, child neurologists, parents and caregivers with objective educational tools which will increase the understanding of IS. Click Here to Learn More

Apparently, there was a big pediatric neurology conference in Kentucky last week, and to coincide with that some folks with the Child Neurology Foundation designated it as the first annual Infantile Spasms Awareness Week.

There's some controversy surrounding all this (if you're interested you can go here and here to read about it) namely because it is sponsored by Questcor, the company that makes ACTH--which as most of you know is one of the frontline treatments for infantile spasms.

I'm certainly not one to buck the system, any system for that matter, but I am puzzled by all of this.

Here are my thoughts: for one, we're talking about a pediatric neurology conference, no? Well, I would hope that neurologists, especially of the pediatric variety, would already be aware of infantile spasms. Sure, it is a rare disease, but I've read somewhere that it accounts for nearly 75% of all cases of epilepsy in the first year of life. Based on that, I'm pretty sure they know what it is (if not, that's incredibly scary), so this seems to me to be an instance of preaching to the choir. Wouldn't the effort be better spent in educating pediatricians (as the above mission statement seems to suggest is one of the goals), who are usually the first practitioners that see these very special children? A quick powerpoint lecture entitled "Infantile Spasms: not just another case of reflux" in peds residency programs would go a long way I should think.

For two: even in my brief time of studying IS, I've come across not one but two frontline medications used to treat it. ACTH, which "worked" for Ella as far as we know, and vigabatrin. So, it seems to me that an awareness week sponsored by only one of the drug manufacturers could have quite a slant to it. (I've read as much in other places (can't find the links now, sorry), that the awareness folks are claiming that use of vigabatrin is only indicated in cases of IS caused by tuberous sclerosis and not the greater IS population at large.)

For three: What exactly is the goal of this awareness week then? To educate whom? And about what?

-------------------------------------

We were fortunate in Ella's case to receive a relatively early diagnosis and subsequent treatment, but even so I have some frustration about how those early days went. After we went to the ER, our pediatrician, bless him, immediately assumed that he was observing infantile spasms in our girl only to be overruled via phone by the neurologist from Children's. Therefore, Ella spent two weeks on phenobarbital (usually not very effective in IS but at least decreased the frequency of her spasms and ended their clustering) while waiting for an outpatient EEG, when really she should have been sent straight to Children's to undergo that testing and be started on ACTH immediately. If Ella were still suffering from spasms at this point, I would blame this delay entirely.

So, there's definitely a need for awareness. I just think the scope needs to be larger and more well-defined. I do understand that this is the first year for this campaign, and so I am hopeful that it will gel in future years. And hey at least we got a fancy website out of the deal.

And because I couldn't put it better myself, I'd like to share some thoughts about this awareness week from Sinead, a fellow IS parent whose 2.5 year old daughter was diagnosed with infantile spasms at the beginning of this year after a prolonged history of seizures.


"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."

♦