My son Benjamin was born a healthy full term baby. He had a gorgeous smile and a wonderful little personality. This all changed suddenly when he began having seizures at six months old. I noticed him nodding off to sleep in his high chair as we ate dinner one night. I dismissed it as typical behavior considering he didn't have a very long nap that day. My husband and I knew something was wrong the next morning though when he did it again at breakfast. My baby was having seizures and I was terrified. I immediately took him to the pediatrician's office that morning. Our pediatrician was great, and without scaring us too much, had us take Ben to a pediatric neurologist that day to be examined. He had a 24 hour portable EEG that started that night, and it took a week to get the results back with a diagnosis. I called every day to see if the results were in. He began having 15-20 clusters of seizures a day. He was diagnosed with cryptogenic IS after his labs and MRI came back normal and started on Depakote. He became lethargic and stopped smiling or making eye contact. He regressed from an advanced 6 month old, to a newborn. He was no longer the vibrant little boy we knew and loved. We became frustrated with his initial neurologists unwillingness to try the treatments we had read about as we researched his condition. We were also unhappy that his condition was not treated as an emergency by this neurologist, when everything we read indicated it was indeed an emergency. We sought out a second opinion and got the ball rolling with a doctor very familiar with IS, Dr. Chugani.

Ben failed Depakote, and Vigabatrin. His prognosis was looking pretty grim considering he had already failed two meds and had been seizing relentlessly for almost three months. His regression was alarming. He stopped using his hands and just layed there listlessly. We then moved onto ACTH injections once Ben was maxed out on Vigabatrin. The ACTH injections were nothing short of a miracle in our eyes. After the first injection, a brightness returned to his eyes that we hadn't seen for what seemed like an eternity. He began the injections on Halloween, and had his last seizure on Nov. 6. He continued with the injections for 6 weeks. He started to smile again, and slowly began to use his hands. We felt like we had been given our baby back. He has had normal EEGs and normal developmental progression since the seizure activity stopped.

Today, Ben is a typical (although we say exceptional in our eyes) two year old boy. He picks fights with his older brother, he plays at the park, he runs and climbs. He talks up a storm. He loves to play with cars and likes when we read stories to him. He loves to snuggle and gives great hugs. He has graduated from his four days a week regimen of Physical Therapy and Occupational Therapy. He receives services two days a week for speech, but is quickly catching up to age appropriate language utilization. He is a joy, and I am grateful every day that we found a knowledgeable and devoted pediatric neurologist when we did. I try not to think about it, but our window could have been very narrow. If it was not for Dr. Chugani and his willingness to listen to us and help our son so quickly, Ben might not be flourishing the way he is today.

I remember being so desperate to find a physician that would treat my sons condition appropriately. My son Benjamin had been having 15-20 clusters of seizures a day for about a month and the neurologist we were seeing was not willing to start our son on the frontline meds that I had read about. I scoured the internet trying to figure out where I should take my son to get him the help he needed. In researching potential hospitals and physicians, I discovered a neurologist referred to as "Dr. Rockstar" in a couple of online blogs. I decided that we should check this doctor out, with a nickname like rockstar he had to be great.

I discovered that this neurologist was a Dr. Harry Chugani at Childrens Hospital of Michigan. Being that it was the weekend, I decided to send an email, mostly to make myself feel better, until the office was open on Monday. I did not expect a reply to my email, but I received a reply an hour or two later. Dr. Chugani connected us with a nurse practitioner, arranged an appointment for us with his colleague, and made sure we had the correct information sent over from our sons neuro. He did all of this from the airport lounge on the weekend en route to a speaking engagement. This is just one small example of Dr. Chugani's commitment to his patients.

Dr. Chugani is well known and loved in the IS community and shows this level of commitment to all parents that seek his help. He is always available and always approachable (I often wonder if he ever sleeps or takes a real vacation!). He is up front and honest, and does not make false promises. He takes the time to educate and empower parents to advocate for their children meaningfully. His office is always full, but he never rushes you out of an appointment. He has conducted research, petitioned to gain FDA approval for drugs that provide a means of stopping the seizures that our children suffer with day in and day out, and has written numerous publications focused on epilepsy and IS. He has assembled a team of professionals that truly work to ensure that your child has access to any and all treatments that might help your child. He is truly devoted to his patients and to improving outcomes for all children that suffer from infantile spasms and childhood epilepsy.

Benjamin has been seizure free just short of two years now. He runs, laughs, climbs on the kitchen counter, talks up a storm, plays with his older brother, and gives some of the best hugs and kisses.

I owe this miracle to the dedication, devotion, and knowledge of Dr. Harry Chugani. He embodies all that an IS Hero is and should be. Dr. Chugani is truly a champion for the cause, and my family will be forever grateful for the time, caring, and compassion he has shown us.