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Hello, my name is Lisa Elliott. My husband Tim and I are setting up this page to both spread awareness about a widely unknown medical condition, as well as to reach out for support in continuing our search for a solution to our child’s suffering. Our daughter, Ever Jane Elliott, is 12 years old and has been fighting a debilitating chronic illness for most of her life. Her diagnosis is called Cyclic Vomiting Syndrome with Abdominal Migraines.
We knew something was wrong when Ever was just 3 days old. It was her first day home from the hospital. I was changing her diaper on my bed when she stopped breathing and began turning purple. It took several minutes to clear her airway and get her breathing again. We went by ambulance to the nearest hospital where we learned that she had actually been drowning internally on her own vomit. We were told that she had severe reflux. She was put on several medications, as well as an apnea monitor that she would continue to wear 24 hours a day until she was almost 1 year old. The purpose of the monitor was to alert us when she stopped breathing. Ever spent the first year of her life violently throwing up as many as 20 times per day and many times would choke on it requiring us to do CPR.
We were told that she would eventually outgrow this condition as her muscles developed, and after that first year we thought she had. Between the ages of 1 and 4, we had a happy, healthy child.
Fast forward and the trouble started up again when she was almost 5 years old. Ever would complain of tummy aches several times per week, especially late at night and in the early mornings. The tummy aches turned into frequent vomiting, so we began taking her to doctors to get answers. Every doctor we saw told us that her reflux had come back. She was prescribed one standard acid reflux medication after another. When the meds didn’t help, the doctor would tell us that they were very sorry for her suffering but there was nothing they could do and that we just had to wait for her to grow out of it. Then the cycle would go new doctor, same diagnosis, same dismissal, repeat.
The older Ever got, the more severe the cramping, nausea and vomiting became. Getting her to school in the mornings became harder and harder. She was often crying or throwing up even in the car on the way to school. Sometimes we would arrive to school on time, but have to just sit in the car for a half an hour or more while she continued to throw up and we waited for the nausea to decrease. We started getting threats from her school about her absences and lateness even with doctor’s notes. Eventually, we made the decision to remove her from public school and I home-schooled her through 3rd grade so we could work around her illness. Ever made the decision that she wanted to go back to public school beginning in 4th grade. We knew it was going to be difficult, but she really wanted to try.
For the next couple of years, Ever would wake up nauseous most days, throw up a couple mornings per week, go to school nauseous, but work hard to stay in school and maintain A’s. As her mother, the hardest part for me was not being able to do anything to help her. Most evenings she battled extreme nausea while doing her homework. A couple nights per week, that nausea would turn into a night of vomiting beginning after eating dinner. If she hadn’t finished her homework before dinner she would often have to finish it with a bucket in her lap.
During the summer before 6th grade, more symptoms began to develop. The episodes, as we had begun calling them, were becoming worse. She was getting body aches, headaches, and she was sometimes having trouble swallowing and breathing. We finally found a great Pediatrician and a Pediatric Gastroenterologist who both took us seriously for the first time and began testing. Ever underwent an upper endoscopy, biopsies of her esophagus and lots of blood tests. We ruled out food allergies, Celiac Disease, esophageal scarring, and twisted intestines. Unfortunately though, they did not find anything they could fix.
In January 2015, halfway through 6th grade, Ever began an episode unlike anything she had ever experienced before. She started having migraine headaches with light sensitivity, horrible aching in her arms, legs and hands and stabbing pain in her stomach. She slept for several days and then the vomiting started. She began vomiting up to 30 times per day every day. We did a brain MRI to rule out brain tumor and brain herniation, a stomach emptying scan to rule out Gastroparesis, an abdominal ultrasound to rule out gallbladder, kidney and liver problems, as well as several abdominal x-rays to look at her intestinal tract. She also underwent another upper endoscopy with biopsies this time installing a bravo chip in her esophagus to monitor her acid levels. Once again, no answers. It was at this time, after ruling out everything else, that Ever was given the diagnosis of Cyclic Vomiting Syndrome. Ever missed 2 months of school while she continued to vomit around 30 times per day often requiring hospitalization for IV fluids.
Receiving a CVS diagnosis was bittersweet. It was nice to have a name for her illness and something to research, but sadly CVS has no cure. Over the course of the last year, we have tried many meds that have proven to be helpful for some CVS sufferers, including anti-nausea and vomiting meds usually reserved for chemotherapy patients (but at 2 to 3 times the chemotherapy dose). Unfortunately, we have not found anything to help her yet.
Ever’s most recent episode began in mid October of 2015. Once again with new symptoms. In addition to the nausea, aching limbs, exhaustion, stabbing pains, migraine headaches, and vomiting over 30 times per day, she was also experiencing drops in blood pressure with dizziness, weakness and temporary loss of vision. Many days she couldn't even get out of bed or walk on her own. This time, the vomiting continued at that rate every day for 3 straight months. She lost a lot of weight and required hospitalization several times for IVs and tests. During this time, Ever had an EEG to rule out a rare seizure condition and an EKG where we discovered she has developed an irregular heart rhythm. Even after the vomiting began to slow down, the headaches, weakness and blood pressure issues remained for another month. In total, her CVS had her completely out of school for 17 weeks followed by 3 weeks of half days.
She is now finally back to her baseline, experiencing nausea at some point almost every day, but only throwing up a handful of times per week and will begin full school days again this monday March 7, 2016. All of her teachers are very understanding and a 504 plan is in place to assist her as much as possible when she gets sick at school. My daughter is the strongest person I know, and can usually tough it out sometimes throwing up 4 or 5 times at school before even asking to come home.
Going forward, Ever’s Pediatric Neurologist would like to begin genetic testing and testing for Mitochondrial Disease. Her Gastroenterologist is doing repeated testing for a Urea Cycle Disorder and other metabolic disorders. We would like to take a trip to Wisconsin to the Milwaukee Children’s Hospital to see Dr. Li, the nation’s leading Pediatric Gastroenterologist specializing in Cyclic Vomiting Syndrome. We would also like to take Ever to the Mayo Clinic’s Autonomic Dysfunction Clinic in Rochester, Minnesota. Testing needs to be done as soon as she begins her next episode. Unfortunately, due to the completely unpredictable nature of her cycles, nothing can be scheduled yet. An episode can hit at any time without warning.
As you can imagine, all of these tests, in-patient hospital stays, urgent care visits, specialist appointments, therapy, travel expenses, prescriptions, supplements, etc. really add up. As unnatural as this feels for us, we are reaching out to friends, family and the community asking for support. Anything you can donate will help us ensure that Ever continues to get the care she needs and the testing required to find answers and improve her quality of life. If you are able to help in any way, even if just through prayer, we really appreciate it. Thank you!
For more information on Cyclic Vomiting Syndrome, please visit rarediseases.org/rare-diseases/cyclic-vomiting-syndrome/
We knew something was wrong when Ever was just 3 days old. It was her first day home from the hospital. I was changing her diaper on my bed when she stopped breathing and began turning purple. It took several minutes to clear her airway and get her breathing again. We went by ambulance to the nearest hospital where we learned that she had actually been drowning internally on her own vomit. We were told that she had severe reflux. She was put on several medications, as well as an apnea monitor that she would continue to wear 24 hours a day until she was almost 1 year old. The purpose of the monitor was to alert us when she stopped breathing. Ever spent the first year of her life violently throwing up as many as 20 times per day and many times would choke on it requiring us to do CPR.
We were told that she would eventually outgrow this condition as her muscles developed, and after that first year we thought she had. Between the ages of 1 and 4, we had a happy, healthy child.
Fast forward and the trouble started up again when she was almost 5 years old. Ever would complain of tummy aches several times per week, especially late at night and in the early mornings. The tummy aches turned into frequent vomiting, so we began taking her to doctors to get answers. Every doctor we saw told us that her reflux had come back. She was prescribed one standard acid reflux medication after another. When the meds didn’t help, the doctor would tell us that they were very sorry for her suffering but there was nothing they could do and that we just had to wait for her to grow out of it. Then the cycle would go new doctor, same diagnosis, same dismissal, repeat.
The older Ever got, the more severe the cramping, nausea and vomiting became. Getting her to school in the mornings became harder and harder. She was often crying or throwing up even in the car on the way to school. Sometimes we would arrive to school on time, but have to just sit in the car for a half an hour or more while she continued to throw up and we waited for the nausea to decrease. We started getting threats from her school about her absences and lateness even with doctor’s notes. Eventually, we made the decision to remove her from public school and I home-schooled her through 3rd grade so we could work around her illness. Ever made the decision that she wanted to go back to public school beginning in 4th grade. We knew it was going to be difficult, but she really wanted to try.
For the next couple of years, Ever would wake up nauseous most days, throw up a couple mornings per week, go to school nauseous, but work hard to stay in school and maintain A’s. As her mother, the hardest part for me was not being able to do anything to help her. Most evenings she battled extreme nausea while doing her homework. A couple nights per week, that nausea would turn into a night of vomiting beginning after eating dinner. If she hadn’t finished her homework before dinner she would often have to finish it with a bucket in her lap.
During the summer before 6th grade, more symptoms began to develop. The episodes, as we had begun calling them, were becoming worse. She was getting body aches, headaches, and she was sometimes having trouble swallowing and breathing. We finally found a great Pediatrician and a Pediatric Gastroenterologist who both took us seriously for the first time and began testing. Ever underwent an upper endoscopy, biopsies of her esophagus and lots of blood tests. We ruled out food allergies, Celiac Disease, esophageal scarring, and twisted intestines. Unfortunately though, they did not find anything they could fix.
In January 2015, halfway through 6th grade, Ever began an episode unlike anything she had ever experienced before. She started having migraine headaches with light sensitivity, horrible aching in her arms, legs and hands and stabbing pain in her stomach. She slept for several days and then the vomiting started. She began vomiting up to 30 times per day every day. We did a brain MRI to rule out brain tumor and brain herniation, a stomach emptying scan to rule out Gastroparesis, an abdominal ultrasound to rule out gallbladder, kidney and liver problems, as well as several abdominal x-rays to look at her intestinal tract. She also underwent another upper endoscopy with biopsies this time installing a bravo chip in her esophagus to monitor her acid levels. Once again, no answers. It was at this time, after ruling out everything else, that Ever was given the diagnosis of Cyclic Vomiting Syndrome. Ever missed 2 months of school while she continued to vomit around 30 times per day often requiring hospitalization for IV fluids.
Receiving a CVS diagnosis was bittersweet. It was nice to have a name for her illness and something to research, but sadly CVS has no cure. Over the course of the last year, we have tried many meds that have proven to be helpful for some CVS sufferers, including anti-nausea and vomiting meds usually reserved for chemotherapy patients (but at 2 to 3 times the chemotherapy dose). Unfortunately, we have not found anything to help her yet.
Ever’s most recent episode began in mid October of 2015. Once again with new symptoms. In addition to the nausea, aching limbs, exhaustion, stabbing pains, migraine headaches, and vomiting over 30 times per day, she was also experiencing drops in blood pressure with dizziness, weakness and temporary loss of vision. Many days she couldn't even get out of bed or walk on her own. This time, the vomiting continued at that rate every day for 3 straight months. She lost a lot of weight and required hospitalization several times for IVs and tests. During this time, Ever had an EEG to rule out a rare seizure condition and an EKG where we discovered she has developed an irregular heart rhythm. Even after the vomiting began to slow down, the headaches, weakness and blood pressure issues remained for another month. In total, her CVS had her completely out of school for 17 weeks followed by 3 weeks of half days.
She is now finally back to her baseline, experiencing nausea at some point almost every day, but only throwing up a handful of times per week and will begin full school days again this monday March 7, 2016. All of her teachers are very understanding and a 504 plan is in place to assist her as much as possible when she gets sick at school. My daughter is the strongest person I know, and can usually tough it out sometimes throwing up 4 or 5 times at school before even asking to come home.
Going forward, Ever’s Pediatric Neurologist would like to begin genetic testing and testing for Mitochondrial Disease. Her Gastroenterologist is doing repeated testing for a Urea Cycle Disorder and other metabolic disorders. We would like to take a trip to Wisconsin to the Milwaukee Children’s Hospital to see Dr. Li, the nation’s leading Pediatric Gastroenterologist specializing in Cyclic Vomiting Syndrome. We would also like to take Ever to the Mayo Clinic’s Autonomic Dysfunction Clinic in Rochester, Minnesota. Testing needs to be done as soon as she begins her next episode. Unfortunately, due to the completely unpredictable nature of her cycles, nothing can be scheduled yet. An episode can hit at any time without warning.
As you can imagine, all of these tests, in-patient hospital stays, urgent care visits, specialist appointments, therapy, travel expenses, prescriptions, supplements, etc. really add up. As unnatural as this feels for us, we are reaching out to friends, family and the community asking for support. Anything you can donate will help us ensure that Ever continues to get the care she needs and the testing required to find answers and improve her quality of life. If you are able to help in any way, even if just through prayer, we really appreciate it. Thank you!
For more information on Cyclic Vomiting Syndrome, please visit rarediseases.org/rare-diseases/cyclic-vomiting-syndrome/