Charlotte Odom – Better Quality of Life Medical Project

UPDATED BIO

Charlotte “Charley” Odom is a loving, gentle, and curious 6 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 polyhydramnios and Trachea Esophageal Fistula (when the esophagus and trachea merge). A day after birth, Charley underwent surgery for her TE fistula as well as Esophageal Atresia (a separation in the esophagus). Charley stayed in the NICU for 2 1/2 months and utilized an apnea monitor for the next six months. As parents, we thought that was some of the scariest stuff we would ever go through…

Charley was moving on from her early challenges to be a fun, book loving, sweet little girl until April 2017 when it appeared she had a strange stomach bug for 4 days.

In June 2017, Charley 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, Charley was diagnosed with Cyclic Vomiting Syndrome.

Charley’s episodes took a turn for the worse in September of 2017 when it would take 6-9 days to come out of an episode and they were occurring every 2-3 weeks. Each episode Charley was hospitalized until she was ready to eat and keep her food down. These long and frequent episodes continued until Summer of 2019 when we began targeting the illness with anxiety and cluster headache medication. Charley soon went as long as 7 months between episodes!

Cyclic vomiting syndrome has no cure and no exact medication for treatment. We have learned a lot about this condition over the years and how to better prepare for her episodes. Charley currently has a GJ tube in her stomach that is used during episodes to help keep her at home and hydrated while she recovers. Her biggest triggers are anxiety and illness (such as bad colds, congestion, etc). The episodes are now as short as 12 hours and Charley is usually back to herself within 24 hours!

As Charley grows and we continue to learn more, we are hopeful for a specific medicine that cures and prevents Cyclic vomiting syndrome.

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