Seizures: in the beginning

      Seizures are a real pain. They could really care less about your plans for the day. In Kylie' s case, the first seizures we saw were barely noticeable. They were just a facial expression and stiff, slow movement with her upper body. They caused her to cry for very long periods of time after probably because they scared her. But after awhile not all of the seizures caused this. Our first medication was Phenobarbital.  As I recall it didn't help much. Next was Kepra.  Seizures didn't go away but we're probably less frequent. When your new at this unfortunate and strange shift in your life everything is scary. It's all uncharted territory but if you're reading this because you just learned your child has Lissencephally, believe me when I say it will get easier, you will learn the ropes.  It will be possible to go a day without freaking out. We ran to the ER every time Kylie' s seizures were lasting a little too long. We thought "Oh my God, she's gonna die right here." Every day I thought, "is she dying? "  Worst days of my life..... Time goes on and you watch people go on with their petty issues and that's really hard too.  Acquaintances of mine literally were seen dodging me in Wal-Mart because they "didn't know what to say".   Some people would comment " Oh, you need a day at the spa" (How ridiculous.)  So, point is...you have to turn a deaf ear (...and maybe get new friends, I did.)
           After inpatient hospital video monitoring with EEG(electroencephalogram), Kylie was diagnosed with infantile spasms. These are a type of seizure that children two and under can have. They are best treated with daily injections of ACTH(adrenocorticotropic hormone). My husband was trained to give them in the hospital (as I stood in the hallway out of ear shot) So we were sent home with what is essentially a steroid treatment. That meant Kylie was hungry ALL THE TIME!  This took on a whole new level of sleeplessness as Kylie was breast fed. So I turned into a barely human milk machine. Ky was more like an appendage than a separate person. But I was fine with it, breastfeeding is pretty much like that anyway.  She ended up having two rounds of ACTH, each lasting a month. As you can imagine, Kylie ended up looking like a balloon about to pop. Infantile spasms, I came to understand are very important to get rid of quickly. This I was not told directly but I could sense the urgency. You absolutely have to listen closely and hang on every word the Dr' s say.  There is a reason Dr' s word things a particular way and you have to ask specific questions in order to get the information you need. The more you know the more you can help your child. This does not mean to go crazy on Googling and trying to find alternative treatments that promise crazy results.... let us not go there. Your child has a brain abnormality, he's not going to grow pathways in his or her smooth brain anymore than a person will grow an arm that is missing!!  Your goal should be to understand the diagnosis as best you can so that you can make added adjustments to your child's routine and/or dietary needs, whatever the case may be.

Kylie approximately 7 months old during ACTH treatment