Aidan was born a health boy in January of 2006. At about four months Aidan began having small tics. We did not think much of them as he would smile and laugh after each one. They were few and far between at first. However, we did begin to worry about them and when we asked his doctor about them; she she did not think much of them as he still seemed to be developing normally. At his six month check up we explained them to his doctor again and as she was explaining what she thought they could be, nothing serious or nothing to worry about, he had a few. At that point she excused herself and contacted a pediatric neurologist. When she returned she told us that a Pediatric Neurologist would be meeting us at the emergency room of the nearby hospital.
At this point we became worried but still only thought that the worst that could happen would be that the pediatric neurologist would prescribe some medication, request that we schedule an appointment with him in a few weeks, and send us on our way. Little did we know that this was the beginning of our nightmare. Immediately upon seeing the EEG the Pediatric Neurologist diagnosed Aidan with Infantile Spasms (or West Syndrome). The doctor explained to us that this was very very serious. We still struggled to comprehend what was happening as he looked perfectly fine.
He spent the next 11 days going through a battery of tests and began taking ACTH, a powerful steroid. The seizures ceased to occur within a few days of taking the steroids. Over the next 6 weeks no seizures occurred, however Aidan, a 7 month old, gained approximately 6 pounds, experienced high blood pressure, and thickening of his heart wall. He was weaned off the medication and the seizures did not return.
Do to his large size at this point he began receiving physical therapy. Things were looking good, however, after about 2 months of being seizure free we began to notice a different type of seizure. After another stint in the hospital Aidan was diagnosed with myoclonic seizures. Although disappointed with the news, we were happy that the Infantile Spasms had not returned as the myoclonic seizures were not nearly as serious and could be controlled with a relatively benign medicine.
Over the next year he took a number of anti seizure medicines to no avail. Also, Aidan was falling further and further behind developmentally. Aidan now had 5 separate therapists, for a total of 13 hours a week, working with him in a number of areas. And the worst part was that the seizures were becoming more and more violent, and they were becoming more frequent; the infantile spasms had returned. Aidan was admitted to the hospital again to go though another round of tests. Before the age of two Aidan had been admitted to the hospital three separate times to undergo observations and testing.
Our options were running out. We tried another medicine, which was one last shot at medication before taking him to Johns Hopkins Medical center to start him on the Ketogenic diet. After a few months of being on the new medication the seizures were still not under control and Aidan’s future was not looking bright. Due to his age and the severity of the seizures we were now told that Aidan K would likely have permanent developmental issues.
We contacted Johns Hopkins, and with the help of a friend, were able to schedule him for the May 2008 Ketogenic Diet session.
On March 8th 2008 while visiting his Grandma Nancy for the last time, Aidan had approximately 30 seizures over the span of 25 minutes. They had never been that severe or lasted that long. On March 9th and 10th he did not have any seizures. This was the first time Aidan had a day without a seizure in over a year and a half. On March 10th Aidan’s Grandmother passed away after a short battle with cancer; she was only 59. On March 11th Aidan had a another violent set of seizures that lasted nearly thirty minutes. They were his last!!
Aidan has undergone a number of EEG’s since then and there are no signs of the Infantile Spasms or any other type of seizures. Although still developmentally behind Aidan has the potential to live a typical, seizure free life. We thank his Grandma Nancy everyday for what she did and continues to do for Aidan.
Although he had been exhibiting signs and symptoms of it for a few years, Aidan was formally diagnosed with a Pervasive Development Disorder (PDD), more commonly known as Autism, just before his 7th birthday. He continues to do well academically but struggles in some social areas.