Sam just had his yearly follow up with his neurologist. I love this man. When Sam was 9 months old he was diagnosed with Infantile Spasms; also called West Syndrome Epilepsy. Now this might sound like an unassuming name but don't be fooled... Infantile Spasms is a rare, severe and life threatening form of epilepsy. It steals babies from their parents, it crushes dreams and pretty much all the literature out there preaches nothing but gloom and doom.
Sam was diagnosed roughly 2 months after his open heart surgery. After a difficult beginning, to say the least, we were thrilled that at the time Sam was eating baby cereal and taking a bottle, he was rolling over and holding up his head and exceeding everyone's expectations... we could only see blue skies ahead. We didn't see the sucker punch coming and were left gasping for air. Later Sam's neurologist would tell us that that Sam's EEG was one of the worst he had ever seen, an 11 on a scale of 1-10, and that at very best we could hope that Sam would one day be able to hold our eye contact for 3-4 seconds at at time. He told us to never give up hope but that we should prepare ourselves for the worst case scenario. You see... when a person has epilepsy their brain waves reveal a spike(s) on the EEG during the actual seizure and regular (or somewhat regular) brain wave pattern the rest of the time. They are able to function in the real world, hold a job, feed themselves, walk and live a fairly normal life. However, with IS the chaotic scramble of brain waves is pretty constant. This pattern is called Hypsarrhythmia or HYPS for short and usually reveals 13 or more chaotic spikes per minute. While the brain is preoccupied with this chaotic pattern, development stops and in most cases regresses significantly. Most children diagnosed with IS are not capable of simple things like maintaining eye contact, grasping objects, head control and other basic developmental skills. Sam was no exception. IS strikes most children between the ages of 3-18 months and eventually all kids will outgrow IS... unfortunately the rule more than the exception is that these kids will then develop or "grow into" another even an even more difficult to control from of epilepsy called Lennox-Gastaut Syndrome or LGS.
Sam has been seizure free for a little over 5 years now and continues to progress. We are ever watchful for any signs of weakness, seizures or other neurological issues that could arise at anytime... however the more distance he puts between his last seizure the more and more we are able to reassure ourselves that Sam will remain seizure free... possibly for the rest of his life. ... each day is a gift.
Like I said... we had a follow up with his neurologist, Dr. Nishant Shah, Director of Peds. Neurology at Lutheran General Hospital. He is thrilled with Sam's progress and told me that he is an exception to the rule and is probably doing the best of all his IS graduates. This made my heart both leap and sink at the same time. I rejoiced for Sam but I know first hand how devastating IS is and can only imagine how crushing a LGS diagnosis would be and I thought of all our IS friends still battling this terrifying beast and I wanted so very badly for their wars to be over. I know that although Sam is still so very delayed he is a shining star in the universe of Infantile Spasms. I am soooooo extremely happy for Sam and all the possibilities available to him but at the same time my heart goes out to all our IS friends who are living with and fighting to free their brains from the chaotic prison that holds them back. I pray that someday they too find themselves in their neurologist's office hearing the same words that I heard... Sam is an inspiration and a beacon of hope that YES, you can beat IS.
And please know that I am not in denial.... I know that my child is still severely delayed, largely due to IS (with some other factors mixed in there for good measure), however with his IS resolved his brain is able to develop new pathways and he is able to progress. So when people look at my child and they feel sadness or pity because they only see how delayed he is... I know that they have no idea how wonderfully amazing he is. He has worked really hard to be this delayed and he deserves all the credit in the world for his incredible efforts... if they only knew how much he has had to overcome they too would be singing his praises.
So thank you Dr. Shah. Thank you for sticking with us when our days were the darkest and there were no stars in the sky and thank you for always smiling at Sam and for treating us and him with respect and kindness. Thank you for recognizing how special my child is, for seeing his abilities and not focusing on his disabilities, for knowing how very hard he has worked to get to where he is today and thank you thank you thank you for rejoicing with me knowing what an oh so very special gift we have been given.