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Last Updated: 04/17/2014
 

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 Inspirational Stories

AlexAlexander the Great

by Emma Catanzaro, Alex's mom

 
Let me start at the end by telling you that Alex is today a happy, loving 4-yr-old. If you saw him, you would never know he has anything wrong with him. You would have no idea what this little boy has endured and how much he has touched the lives of everyone around him. We are very thankful for the Alex God gave us back on March 12, 1999. That is the date that Alex had 70% of the left hemisphere of his brain removed.
 
Alex's story is a long one and I'll summarize as best I can. On December 3, 1997, we were blessed with the birth of our second son, Alexander "Alex". He was a beautiful, healthy boy. I had a full-term pregnancy free of any complications. Alex was like any other infant. He cooed and smiled and started rolling over at about 4 months.
 
At around this same time; however, we became concerned because he was crying a lot at certain times of the day, sometimes to the point that he was inconsolable. He was prescribed Zantac thinking it was a reflux problem. In the meantime, I began noticing that he would startle, but what made it different than a regular baby startle (Moro reflex) was that it came in a series of 4 or 5 startles and his eyes opened wide. This would happen when it was quiet, noisy, and at anytime of day. I knew something was not right so I continued to keep a close eye on my beautiful baby boy.
 
One day, while I was working in the kitchen, I heard a bang and Alex started to cry. I ran over to the next room where he was in an Exersaucer playing with his brother. He was fine and had stopped crying. Two seconds later, before I had a chance to reach him, I saw him slam his head down and begin to cry. I picked him up and as I held him close I noticed a series of "crunches." I immediately called the pediatrician who said, "It sounds like you're describing seizures." Needless to say, I fell apart. Alex's older brother Anthony stared at me puzzled while I cried. That Wednesday, what I thought was the worse day of my life, an EEG was scheduled for Friday morning. Those 2 days felt like forever. My husband and I tried hard to stay positive, stay strong and act "normal" for Alex and his brother Anthony. We had no idea what lay ahead.
 
On April 17, 1998, big brother Anthony's 2nd birthday we got news that would turn our world upside down and forever change our lives. Alex's EEG showed hypsarrhythmia and Alex was diagnosed with infantile spasms, a form of Epilepsy. We bombarded the neurologist with questions about his prognosis "Will he be normal? ..Does this cause brain damage?.." Almost all were answered with "..anything is possible...we can't know for sure..".
 
Two days later, still in disbelief, we found ourselves admitted in the hospital for the whole routine (urinalysis, blood work, spinal tap, MRI.). All of the results were negative & normal. Alex fell in the idiopathic subgroup of infantile spasms which meant there was no apparent cause for the spasms. Fortunately, this meant the odds were better that the medications would control the seizures and that possibly he'd have a more normal development, thank God. The next day, we were taught how to give our baby boy his ACTH shot which I think hurt us as much as him. Ironically, I felt better administering them myself than having the visiting nurse do it. Believe it or not, she came and watched Anthony while I did the shot.
 
Even though the ACTH gave Alex 2 seizure-free months, eliminated the hypsarrhythmia, and helped him do a lot of catching up it wasn't our "miracle drug" and due to serious side affects we were forced to stop it sooner than the neurologist wanted. After trying several drugs including Vigabatrin, Clonozepam, Topamax and Depakote, we opted for surgery. Alex's EEG showed that the seizures were coming from the left side and the slight weakness on his right side reaffirmed that he indeed had a focal point. The final test called the PET scan confirmed that Alex was a surgical candidate.
 
AlexOn March 9 and 12, 1999, almost 1 year after his diagnosis, he had his surgeries in Detroit, Michigan at Michigan Children's Hospital. The first was invasive monitoring where grids of electrodes are placed directly on his brain to further pinpoint the problem area. The second was the actual resectioning of his brain where they removed 70% of his left hemisphere. They spared his motor and sensory cortex.
 
Immediately following surgery he had a twinkle in his eye that told us he was there. We had freed the demon that kept him trapped inside his little body. The change was miraculous. Alex went 6 months without seizures after the surgery and he did a lot of catching up. Unfortunately, the seizures came back, but the same meds that didn't work before surgery are now able to keep them somewhat under control.
 
Today, Alex is a happy, healthy, boy who will be celebrating his 5th birthday in December. He loves to cuddle, run outdoors and enjoys wrestling with his two brothers. He now communicates all his needs to us. Sometimes I find myself holding back happy tears after answering one of his questions. I still can't believe this is my little Alex talking to me! He is at about a 2 - 3 year level in cognitive skills. We continue to battle his seizures, but the surgery has given our little boy a much better chance at a "normal" life. I know we still have a long road ahead of us, but we have learned to take it one day at a time. We are more than grateful for all the things he learns every day.
 
Alex has taught us more than he'll ever know. He has taught us to appreciate the little things in life, things that we parents usually take for granted. He has instilled a deeper understanding of the importance of friends and family and appreciation of life itself. He has inevitably changed our lives forever.
 
For pictures of Alex, updates, his full story, or to read the journal of our experience with surgery, visit his website at www.geocities.com/thecats5/index.html.  I started this web site to share with other parents our experience and to let them know they are not alone. I hope Alex's story gives others hope when it feels like there's nothing else to hold on to.
 

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