Before I introduce you to our very special KARE Kid I would just like to say welcome back to our blog! I know we have not posted in a very long time be we will be back to monthly spotlights. We would also like to spotlight the caregivers of those with epilepsy. So if you would be interested in sharing your thoughts on caring for your loved one please email Rose@Karefoundation.org. Now let’s get you introduced to our KARE Kid of the month……….
Everyone that knows Nicholas, knows how much he is a very active, fun-loving boy. He is six years old, born on May 20th, 2004. When he was about 5-6 months old, he was diagnosed with Craniosytosis. At the age of 10 months, he underwent a life threatening surgery to reconstruct his skull. The neurosurgeon removed an “H” shape piece of the skull around the ears and then removed the backside of the cranium to reconstruct it. After the reconstruction, they placed his cranium back together and fused everything back together with dissolving wedges. He was left with a scar from the backside of his ear to ear.
Next he had follow up check-ups. We would drive from Glennville to Augusta every month, then eventually once a year. He was released from MCG ‘s care at the age of 3. We were told to only bring back if there was any signs of abnormalities. Never once, did they do a follow up CT scan or MRI to check his cranial suturing. During his Pre-k and kindergarten years, he seemed like a perfectly normal young boy. He at times didn’t like going to school and sometimes would put up a strong resistance with Mom. He started having some real struggles when he started first grade. Around the end of September, we learned that his grand father is dying from a brain tumor known as Glioblastoma. This seemed to trigger major issues with going to school. We thought, it might have been anxiety separation from Mom. It progressively grew harder to get him to school. He would fight his mother, kick, scream, and do everything he could to not get on the bus. So, we started thinking that maybe there was something going on at school or on the bus. We had no luck, after talking with the teachers and the bus drivers it seemed okay.
We made decision to try home schooling him. Now December, he had two weeks of school before winter break. The first week went fine. The second week not as well. He would have “melt downs”. He would dry cry for two or three hours a day, hitting himself, screaming and yelling. It was gut wrenching. During the winter break, his brothers and sister was home and again he seemed fine. We noticed that on Christmas day he wasn’t happy. What made this strange was that he got a four wheeler from Santa. We knew something wasn’t right.
After the next two weeks of meltdowns everyday, we took him to his physician. Dr. Thompson suspected that he may have a form of autism, known as Aspergers. So, he prescribe blood pressure medicine, oddly enough, he seemed like his old self after starting the medication. That was Wednesday Jan 26th, 2011…..now here comes the worst.
On Sunday, we all went outside for a couple of hours, while I bombed the house. After letting the house air out, we returned inside. He proceed to have a meltdown. We had learned that to help keep them less severe- we hold him and calm him down. So, mother did just that. He calmed down and then proceeded to take a nap. Mom went outside and when I turned around he was standing up behind the couch with a cold blank stare on his face. I kept asking him what was wrong…he couldn’t answer me. I picked him up and he went limp. Mom called Dr.Thompson and we jumped in the truck and headed to the hospital. He became more and more out of it on the way and started seizing in the back seat.
We finally arrived at the hospital, where they were unable to stop the seizures and finally had to put him on a ventilator to help him breathe. He oxygen sats were 47 and his lips were blue.
The decision was them made to life flight him to Memorial Health in Savannah to the Peds ICU. He was having seizures since Sunday @ 4:30ish in the afternoon. It has been over 48 hours and still no answers. There have been hundreds of tests run, and he has been put into a medically induced coma. He has had four different anti seizure meds at their fullest, and still no control. He has been giving treatments for various possibilities and no luck. Being in the coma has drastically reduced the seizures but not stopped them. Test results will be back in two maybe three days. Treatment for the cause will hopefully begin then. After that, they will try to bring him out of the coma….but it is a slow process that could take a couple of days. If the seizures come back, he will be put back into a coma, and we will have to scratch our heads again. What lies ahead??? Nobody knows…not even the Doctors.
Please continue to pray for our son Nicholas, his brothers John and Sam, his sister Grace, and bless the doctors with the correct knowledge they need to fix the underlying problems.
Nicholas today: Despite numerous medication trials, we are no closer to any type of seizure control than two years ago. He has seizures everyday. Nicholas is 9 years old and going into the 4th grade. He loves Spongebob, swimming, playing outside, and music. His motto is, “Don’t ever give up” and when he sets his mind on something his determination is amazing! He is outgoing and loves everyone. His parents home school due to his many daily seizures, but this year we are going to be spending one day a week at the elementary school for music, art, science at PE.
Well that is our KARE Kids story for the month of August! I hope you enjoyed learning about Nicholas and seeing what a fighter he really is! As you can see these kids never let epilepsy get them down, I think we could all learn a lot from them! Nicholas is just one in 50 million that have epilepsy and one of the many reasons we need a cure!!! If you can help in anyway please visit our website www.karefoundation.org.
Thank you all for taking the time to read this and see you next month!