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Connor’s Story

By: Melinda Ostrowski

Connor was born on February 24, 2010 to his loving parents Jayson and Mindy. He has a big brother named Jacob who is about 18 months older than him. In the beginning everything seemed to be fairly normal, aside from being fussy that is. At times it seemed the only way to soothe Connor was to feed him. Let me tell you, the boy can eat! Things were moving along at what seemed to be a normal pace as far as development goes. Connor was hitting his early milestones on schedule and was starting to develop a little bit of personality.

Around the 2-3 month mark we started to notice little changes in his behavior. It started with him always looking down and to the right. Besides that he still seemed to be a normal baby. When we questioned his regular pediatrician we were told there was very little to be concerned about, that this was probably the way he was positioned in the womb and that he would grow out of it. Then came a repeated shake of the head when he was falling asleep. We laughed that off as our little guy being defiant and not wanting to go to sleep. Then came the start of the clusters of seizures. Connor’s started very subtle, they initially looked like a startle reflex that you get when you start to doze off and quickly wake up. We again questioned the pediatrician about these reflexes. Unfortunately Connor never had one of these reflexes in front of the doctor, so this too was discounted as something that he would outgrow. We do have to say that one was easy to agree with since it did look like a startle reflex.

At roughly the 3 month mark we noticed an increase in the frequency of the reflexes. We waited about a week before returning to the pediatrician yet again. At the time he was still hitting his milestones. He was making good eye contact, starting to make typical baby noises, and even starting to roll a bit. Shortly after the 3 month mark the frequency of the of the movements as well as the intensity had increased significantly. Instead of seeing 1-2 individual movements in a day we started to see clusters that could last several minutes several times a day. These clusters were a movement of his arms and legs where his legs would kick out to the sides and his arms would raise to about shoulder height. At he same time his head would dip down and his eyes would roll back in his head. These movements were very systematic, meaning he would have an initial reflex and his body would relax for 5-10 seconds and he would have another “reflex”. This could last anywhere from as little as 1 minute to as long as 20 minutes before he stopped.

After a week of these clusters we started to notice an “absence” in his eyes at the end of the clusters. Connor started to regress on his milestones. He completely stopped smiling and the only noises he made vocally were when he was crying, which was very frequent. He started to have a daily fit where he would scream as if he was in pain for up to an hour at a time until he finally was too exhausted and fell asleep. We took him in to the pediatrician and again were sent away with little direction and no solution.

Finally, at 15 weeks and after significant regression in all of his milestones, we finally were able to make a strong enough case with our pediatrician to get a script for his first EEG. The EEG came back showing a high amount of abnormal activity in the brain, also known as hypsarrythmia. That is the moment we started what is proving to be a long journey searching for a way to reverse the condition and get Connor back on track. Connor has been on several different medications, been sedated multiple times for testing, and has made several trips to UIC Medical center for additional testing, treatment,and examinations. Connor is now 16 months old and has shown signs of improvement in his development. He receives 5 different kinds of therapy through Early Intervention (physical,developmental, speech, occupational, and visual) every week. He continues to have several seizures a day.

We do not know where this is going to end or even how this is going to end. All we know is we love our little boy and will do whatever we need to do to get him back on track. We have started a non-profit organization to help Connor and others with this horrible disease. With the help of everyone that generously donates to Connor’s fund we will continue our journey in hopes of giving Connor every chance at beating this terrible condition. Once Connor is stable and showing acceptable progress we plan to turn our attention to building awareness and supporting further research to help others that are forced to travel the same road.