My Story

Welcome to KC’s web page. Our angel was diagnosed with Infantile Spasms on April 18, 2007 at the tender age of 6 months, exactly 9 days after receiving his DTaP shot. Now 4, KC is still seizing and struggling with sensory, behavioral, and developmental issues.




KC was born on October 3, 2006. He was a healthy, beautiful baby boy. On April 14, 2007 we noticed him rolling his eyes. The eye rolling quickly accelerated into obvious seizure behavior. We were lucky to be sent to Hope Children's Hospital by his then pediatrician, Sylvia Irizarry M.D. There we connected with Dr. Neurologist #1, KC's first pediatric neurologist. Following extensive testing we learned that our boy has a catastrophic form of epilepsy called Infantile Spasms. KC was started on ACTH injections which stopped the spasms within 2 days.

Unfortunately, on May 25, 2007 KC began having another type of seizure, atonic seizures, and after trying several medications, Zonegran is helping to control them. On December 19, 2008, following an attempt to wean him from his meds, KC began having frontal lobe seizures, along with absence and myoclonics. Dr. Neurologist # 1 started him on Trileptal which stopped the hallucinations that resulted from frontal lobe seizures.

In March of 2009 we took KC to Detroit to see the famed Dr. Chugani, a world-renowned expert in the field of infantile spasms. Dr. Chugani performed a PET scan and discovered that KC has bilateral areas of decreased metabolism that is probably where the seizures are originating. Dr. Chugani recommended that we take KC to Dr. Kohrman at the University of Chicago. Dr. Kohrman feels that perhaps KC's previous neurologists didn't recognize seizure activity (generalized bursts) seen on KC's previous EEGs. He is now going to take over KC's care.

Needless to say we were devistated by this turn of events. Currently KC is taking zonegran and depakote in an effort to control his seizures. He has major sleep issues and rarely sleeps through the night even though he is on enough knock out medicine to put down his Grandma for 24 hours! Intellectually KC is doing fairly well and most of the after effects of the seizures are behavioral and physical. KC is now in the EC program at Willow school. He is working hard to keep up with his peers, loving all opportunities to get in a pool or lake, enjoying regular trips to the Shedd Aquarium, and in so many ways is a typical 3 year old. We are so very grateful for that!

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Jeanette Klein posted a new journal entry.

With just 11 days to go until the Epilepsy walk, we are getting excited and are thrilled with all the generous donations from our family and friends. Mr. KC will be able ... Read more

Jeanette Klein posted a new journal entry.

With just 11 days to go until the Epilepsy walk, we are getting excited and are thrilled with all the generous donations from our family and friends. Mr. KC will be able ... Read more

Jeanette Klein posted a new journal entry.

It's that time again, the Greater Chicago Epilepsy Foundation's annual 5K is May 21st at Montrose Harbor and our family is participating. To visit Team KC's funraising ... Read more

Jeanette Klein posted a new journal entry.

KC has pneumonia with a side of ear infection :( The good news is they are letting us care for him at home in spite of his low pulse ox levels. Luckily we are fully ... Read more

Jeanette Klein posted a new journal entry.

Karen has been working on this video of KC's life and it is such a beautiful and thoughtful insight into his struggles that I though we'd share it with you, our wonderful ... Read more

Jeanette Klein posted a new journal entry.

It always creeps into our lives the same way, this damned seizure monster. First he starts jumping a lot in his sleep. This is followed by eye shifts and staring off, but ... Read more

Jeanette Klein posted a new journal entry.

As we approach the busy Christmas season Karen and I want to say a big thank you to all of you, our loyal and wonderful supporters. We have so much to be grateful for this ... Read more

Jeanette Klein posted a new journal entry.

Karen met with KC's doctors at Comer yesterday and it was decided that an aggressive approach would be taken in an effort to stop the hallucinations. He was started on ... Read more

Jeanette Klein posted a new journal entry.

We are sorry to report that KC is in Comer Hospital again. The hallucinations, brief lapses in vision, and severe pain, followed by profuse vomiting caused Dr. Neuro to ... Read more

Jeanette Klein posted a new journal entry.

Tomorrow is KC’s 4th Birthday and we have so very much to be thankful for this year. The transition to full time school went well and he loves the Chicago Autism ... Read more

Jeanette Klein posted a new journal entry.

We are sorry to report trouble in KCville. He began to hallucinate last week and on Monday Dr. Neuro decided that we would pull the Lamictil cold turkey (a first). ... Read more

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