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.