Charlotte Odom – Better Quality of Life Medical Fund
Charlotte “Charley” Odom is a loving, gentle, and curious 4 year old. She has been faced with medical challenges from the start. She came into the world 9 weeks early due to pregnancy complications centered around a Trachea Esophageal Fistula (when the esophagus and trachea merge). A day after birth, she underwent surgery for her TE fistula as well as Esophageal Atresia (a separation in the esophagus). She stayed in the NICU for 2 1/2 months and went home with an apnea monitor that she out grew 6 months later.
Charley was moving on from her early challenges to be a fun, book loving, sweet little girl until June 2017 when she began having recurrent vomiting episodes where she would vomit every 15 minutes to an hour for at least 24 hours. After running multiple tests and scans which all came back normal, her doctor diagnosed her with Cyclic Vomiting Syndrome (only diagnosable by exclusion). Her episodes took a turn for the worse in the fall of 2017 when it would take her 6-9 days to come out of an episode, but they were coming on every 2-3 weeks. Each time she was hospitalized until she was ready to eat and keep her food down. In December 2017, two things happened: Charley started a new medicine and we learned after our doctor consulted with a CVS specialist that she had the a worst case version of this condition. She also started using an NJ tube to help give hydration and medicine during an episode without having to go to the hospital. The new medicine started to shorten her episodes and still does but nothing we have tried can stop them. They can occur anywhere from one week apart to 5 weeks apart with the majority of them coming on every 1-3 weeks.
Children’s Hospital of Wisconsin describes Cyclic vomiting syndrome as “one of the more unrecognized, misdiagnosed and mysterious childhood diseases. Children with CVS experience severe, recurring vomiting episodes but remain completely symptom-free for weeks or even months between the episodes. Over the course of 24 to 48 hours, a child could have more than 30 vomits and a few can vomit hundreds of times per episode. Some research suggests that this condition affects 2 percent of school-aged children. Most children will outgrow CVS around puberty, but about 75 percent will likely develop migraine headaches later in life.”
Thank you for your contribution as we search for medical solutions that allow her to have a childhood and better quality of life.