Rylee’s Story: A Cyclic Vomiting Syndrome Diagnosis Brings Support from the Community

 

A correct diagnosis is often difficult to obtain, especially for a rare disease. Symptoms can be attributed to more common conditions, or they can be written off entirely. Rylee Lawson, a 14-year-old from Florida, experienced this exact phenomenon. For the majority of her life, she thought that she simply had a sensitive stomach. But this ‘sensitive stomach’ caused her to have vomiting spells so severe that she would almost faint. She was forced to miss school and other activities due to her symptoms. It was not until 2019 that she was diagnosed with cyclic vomiting syndrome. After this diagnosis, her community rallied around her.

About Cyclic Vomiting Syndrome

Cyclic vomiting syndrome (CVS) is a rare condition that can affect all ages. It causes episodes of severe vomiting, which have the potential to last anywhere from a few hours to a few days. The cause of this condition is unknown. There are some triggers that have been found to cause episodes, including colds, allergies, sinus problems, emotional stress, excitement, certain foods, overeating, eating right before bed, hot weather, physical exhaustion, and menstruation. This syndrome also links to other things, such as migraines and the chronic use of marijuana.

Episodes of vomiting are the main symptom of this condition, which are severe fits of vomiting that occurs multiple times in an hour. Other symptoms are abdominal pain, diarrhea, fever, dizziness, and sensitivity to light. These symptoms will only appear during an episode.

A diagnosis is difficult to obtain, as vomiting is a symptom of many common illnesses. In order to confirm a diagnosis of CVS, other conditions must be ruled out. Tests used to accomplish this are imaging studies, motility tests, lab tests that check for thyroid problems, and MRIs to check for neurological abnormalities.

There is no cure for CVS; treatment is symptomatic. People may take anti-nausea drugs, sedatives, anti-depressants, and medications that suppress stomach acid. Migraine medications may also be helpful, as can lifestyle changes. If a trigger of an episode is identified, it is important to avoid that trigger. It is also important to remain hydrated, as dehydration is common after severe vomiting.

Rylee’s Story

Rylee thought she had a sensitive stomach for the majority of her life. Vomiting was something that she dealt with, even if it meant that she had to miss days of school at a time. In November of 2019 Rylee missed the second half of cheering for her school’s basketball team, as she could not stop vomiting. It was after this that she was admitted to Orlando Health Arnold Palmer Hospital for Children. She stayed there for three weeks. It was there that she received a diagnosis of an illness that she had never heard of: cyclic vomiting syndrome.

This diagnosis led to doctors performing a gastrointestinal series, where they found an intestinal malrotation that required immediate surgery. The diagnosis and the surgery required that Rylee and her mother, Lezlie, spend a lot of time in the hospital and away from the school system where Rylee is a student and Lezlie is a teacher.

Luckily Lezlie’s superiors gave her as much time as she needed to spend with her daughter. Not only did they support her, but the rest of the community rallied around her and Rylee as well. Her sick days ran out, so other teachers donated theirs. They didn’t stop there. They used an annual fundraiser to donate $500 to Lezlie, along with a card signed by the entire fourth grade of the school. Her intervention team went on to give her a $200 gift card on top of it all.

Rylee also felt the support, as her friends came to visit her in the hospital. Melissa Castañeda not only made the drive multiple times, but became her Hospital Homebound teacher. Her fellow cheerleaders made her an eight-foot-long banner with positive messages and drawings.

While she is doing better, Rylee still feels the affects of the disease. She will most likely feel these symptoms until she is in her 20’s. She is now out of the hospital and she brought all of the gifts she was given back home with her as reminders of the support of her community.

Find the original article here.


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