A Family’s Story | Cyclic Vomiting Syndrome, Epilepsy | Neurology

By Heather

In 2000, soon after my husband and I met we envisioned a dream of what our life would be like after we got married. We would enjoy our careers, build a house with a front porch, have two children and travel the world with them. We married on 9/15/2001, four short days after the 9/11 attacks. We learned a lot from our experience just as the rest of the world. One thing we for sure learned is that things don’t always go as planned.

We built our home (with a small front porch) and our first born blessed us 10 months later. Alexandra filled our world with love. I worked part time and watched her grow. It was the best of both worlds really! When Ally was 11 months old she began having bouts of vomiting. As a new mom a vomiting child was my worst fear. That very statement makes me laugh now.

For the next four years Ally had numerous bouts of vomiting, mostly in the winter months when stress for her was high. She would become dehydrated, we would go to the emergency room, they would rehydrate her and we would go home. This repeated itself over and over again and the only answer we got was Ally had a virus. We went to every hospital in the area. When Ally was five years old and had missed most of her kindergarten year we branched out and drove an hour to Connecticut Children’s Medical Center. Same drill, they rehydrated her and she felt better and we were going to be sent home. But this time I begged for help. We will forever be grateful that Connecticut Children’s listened.

They did all the preliminary testing to rule things out and within three days we had an appointment with our forever angel, Dr. Zeiter. She knew exactly what we were dealing with and what to do. Alexandra has Cyclic Vomiting Syndrome. Through the years we have learned what her triggers are and how to handle an episode so it impacts Ally’s life in the smallest way possible. She is a strong kid and knows just what to do to make it better. Ally still has a handful of episodes a year but the care she gets at Connecticut Children’s is unmatched.

When Ally was five we were blessed with kiddo number two. Colin made our family complete. A bit of a gap in age but our prayers were answered. This beautiful brown haired blue eyed boy made Ally’s eyes sparkle. We lived the “normal” life of two children along with managing Ally’s CVS.

An April afternoon in 2011 changed our life forever. At a friend’s birthday party Colin had a seizure. It was the most helpless feeling I had ever had. He visited St Mary’s Hospital and then continued on to Connecticut Children’s and the plan was to wait and see. Three days later my mother’s intuition told me to bring him back to the Medical Center. Colin was just not right. Within 40 minutes of getting to the ED our whole world opened up and Colin experienced nonstop seizure after seizure, one lasting seven minutes. I will be forever grateful for Connecticut Children’s rallying around my child to make him better. Colin spent five days in the PICU, lost his ability to walk and talk. All tests showed Colin had epilepsy. We were beyond thankful as that diagnosis was the lesser of all evils. We went on to live our new normal.

photo-1Life for me as a Dental Hygienist was over. My kids needed me. Two kids on multiple daily medications, physical therapy to help Colin walk again, speech therapy to bring back his sweet words, managing Ally’s episodes, being on guard with rescue meds for seizures, managing medical bill and DR’s appointments, oh MY! We did it all and became stronger every day!

At a follow up appointment with Colin’s neurologist the doctor suggested Colin be evaluated for Autism. Autism? What’s that? Three short months after Colin was diagnosed with Autism. Time to pound the pavement and help our boy. Colin had therapy appointment after therapy appointment and Ally became his best therapist. In time we learned that Colin also has Apraxia, a convergence insufficiency with his eyes and multiple anaphylactic allergies. Colin has his struggles but seeing the world through his eyes bring a whole new dimension to life.

As for myself, I am no longer a dental hygienist. I am the CEO of our family. I went back to school for education advocacy and attend any and all parent education classes to better understand Colin’s world. Any and everything we have done has proven to be beneficial because my kids are doing well. We have been able to teach our kids life lessons so early in life. We have had family toy drives in the effort to give back just as others have given to us.

It’s been a journey. Without the help and guidance of everyone at Connecticut Children’s our story may have been different. Connecticut Children’s always makes my kids feel better. With all the craziness we experienced, my family was blessed with a gift – we met a man who was able to show my kids the positive side of the hospital and master the skill of sticking their tongues out ;). My kids have had the amazing gift of being a part of events for the hospital like danceathons and radiothons. The experiences we have been blessed with give us the strength to get through the most challenging times. Being a part of these special occasions have shown us just how much Colin can really do and how strong both of my kids are. It’s a gift my daughter classically describes as better than Christmas morning! They are not scared to go to the hospital anymore. They see the positive side. Connecticut Children’s has always made us feel a part of their family.

photo-2So you see this is not the dream we envisioned in 2000 but one thing I can say for sure, if I knew then what I know now, this is exactly the dream we would have envisioned. I am forever grateful for the life we have and the strength and courage our experiences have given us.

A very special thank you goes to the entire staff of Connecticut Children’s emergency department, you are the doors, the place that continually makes my kids better. A special thank you to Dr. Zeiter, Dr. Ionita, Dr. Milanese, Dr. Kalsner, Scott Organek, Marissa Troiano, Adria Giordano, Jennifer Twachtman-Bassett and all the staff and nurses that have helped use in so many ways!

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