Child Of The Month

Kevin
by Nancy Chamberlin

Kevin is a very sweet and special 4-year old boy. He has a large trisomy 15 (isodicentric) diagnosis. Kevin was born on December 30, 1995. He was a week overdue and came into the world weighing 8 lbs 8 oz. My husband Mark and I took Kevin home unaware of any problems. Kevin has a sister, Natalie, and a brother Matthew, who both were very excited about their new brother. At about 2 months of age, Kevin did not seem able to see and his eyes were looking upward a lot. The doctors began tests to check for tumors or hydrocephalus. Kevin was bottle fed and eating fine, but he was not developing fast. His head was weak and we thought he was blind. Kevin had a startle reflex that could not be pinpointed as seizures, so we continued to watch and wait.

When Kevin was 10 months old he woke up with a scream one night. He was seizing with constant myoclonic-clustered seizures. We raced him to Children’s Hospital where they treated him with four different drugs. By the second day, Kevin was overdosed and stopped breathing. He was put in ICU and on a respirator. It was so awful, and we cried and learned a lot. The doctors couldn’t diagnose him but did look for many diseases. After about a week, Kevin came home. He was put on ACTH shots that we had to give in his thighs. This treatment did not work so we began other drug treatments. At age one, we tried the Ketogenic diet and this did not help his seizures either. Kevin’s seizures increased and by age two he had many myoclonics and ten minute long tonic-clonic seizures. We use diazapam rectal gel to stop these long seizures. Our lives continued and our children’s schedules kept us busy. We tried to be as "normal" as possible and thanks to family, friends, and God, we have survived.

The chromosome test was overlooked at first, but then done at about age 2 ½. The results were 48 chromosomes, one large inverted dup 15 and one small unknown chromosome. Kevin is four now and has myoclonic seizures all day; he has tonic-clonic seizures a couple of times a day. The big seizures last up to 2 or 3 minutes. He is low-toned and cannot sit up alone. He attends pre-school with a mix of special needs kids and mainstream kids. He eats well but cannot chew well, and he now weighs about 35 lbs. Kevin kisses a lot, he can hug and love us and he seems mostly happy. Kevin loves music and to look at books. He is a big, exhausting boy, but it has been a very rewarding life that we share.

This past April we met another family, the Edwards, with a beautiful daughter, Brianna. She has the same diagnosis and is very similar to Kevin. It was a special and touching moment to meet with them and to share our children’s stories. Angie, Wayne, Brianna, and their 8-year old son Aaron became our instant family. Kevin is a gift from God and we are lucky to know him. The newsletter, IDEAS, and new web-page are helpful. Kevin seems more severe than the other kids, but it is still interesting for me to read about the children’s achievements.

Child Of The Month Archive

Child of the Month	Lisa Poore
Child of the Month	Spencer Gray
Child of the Month	Lindsey Young
Child of the Month	Olivia Taylor
Special People Profile	Cheyenne Rain Jackson
Special People Profile	Naomi
Special People Profile	Bobby
Special People Profile	Kevin
Special People Profile	Olivia
Special People Profile	Megan
Special People Profile	Sarah
Special People Profile	Cheyenne D
Special People Profile	Joshua
Special People Profile	Robert
Special People Profile	Frederique
Special People Profile	Julia
Special People Profile	Ryan
Mount Prospect Times Article	Jake
Epilepsy Foundation Newsletter	Will
Exceptional Parent Magazine Story	Joshua D