This site was created to help parents through the confusing path of an Infantile Spasms (IS) diagnosis. My daughter was diagnosed with IS in February of 2014. We achieved seizure control in April 2014. She regressed back to newborn and suffered from cortical visual impairment. Yet, she is now beginning to say more words can sit independently and beginning to pull to a stand as of January 2015. I hope you find the information I have on the subsequent pages helpful. I found myself referring parents to many of these resources time and again, and I really wished someone had created a clearing house for IS information so that I didn't spend so much time searching around the Internet for all the information.
I am no doctor, but I am pretty well educated and I do have a pretty firm grasp of the IS course after helping dozens of families through the process. Here is what I know:
You need to stop the spasms if at all possible. This leads to a harrowing feeling as a parent, because nearly all the medications have significant side effects that will be difficult to watch your child suffer through. In the end I chose quality of life at the other end of the IS journey over the risks of the medications. It is a tough choice and only one you can make.
Most of the stuff you read online about infantile spasms, and often what the doctors tell you are worst case scenarios frequently. Sure there are kiddos that have bad outcomes. Yet, there are also many with acceptable and good outcomes, and during the process cling to the hope that your child will fall into that category.
Continue to seek the cause of IS till you find it. Broad categories of causes include: Metabolic disorders, physical malformations in the brain, Stroke, Hemorrhaging in the brain, Tuberous Sclerosis, Genetic, and for about a third of kids we never know the cause and it is deemed cryptogenic or idiopathic.
A lot of what the process of gaining seizure control will look like for you will depend on what the cause of the IS is.