By: Brandi LeCompte
In January of this year, life was bursting with typical teenage activities for 15-year-old Erica Thrush, she was a straight “A” student at the magnet school of her choice, where she took all advanced classes. She held first chair viola in orchestra. Erica had an active social life filled with friends and fun. To top it off, she was dancing 25-30 hours a week on a competitive dance team and traveling to dance competitions on the weekends. Erica’s mom, Kerri Thrush, sums it up in one word, “BUSY!”
Erica enjoyed ice cream, snowballs and Frappuccinos, just like most teenagers do. “Erica was healthy, happy and loving life,” says Kerri. Unfortunately, gastroparesis symptoms would soon begin. Erica began having stomach pain, which her pediatrician was treating as constipation. She was prescribed medication that should have given her some relief, but several weeks later, Erica continued to complain of stomach pain and feeling “full”. She began eating less and less. During the next few weeks,
Erica made numerous trips to her pediatrician, who eventually referred
her to a pediatric gastroenterologist. While waiting on this appointment,
Erica’s symptoms worsened and she continued to lose weight.
When she was finally able to see the specialist, her family was
hopeful that he would provide much needed answers. “All
he did was send her for blood work and schedule a follow-up with
his physician assistant in a month. I knew at this point something
more would need to be done. I knew I was up for a fight and I was
ready,” says Kerri.
Erica had many doctors and ER visits, but they could not find anything wrong with her. It was now April, and the pain was taking a toll on Erica.
She was only eating about 300 calories a day and had lost 30 lbs.
“She was malnourished, pale, cold, low heart rate, low blood
pressure, amenorrhea, and could no longer keep up with dance
or her school work,” says Kerri. She was given a mental
health referral for a possible mental disorder, eating
disorder or both. Once again, Erica had to wait on an
appointment, it would be a month before they could see
“I ended up bringing her to the ER because I was losing her. My baby was dying before my eyes and I felt helpless. They agreed to admit her after we fought and cried to every doctor in the ER,” says Kerri. The doctors decided that Erica would need to eat 1500 calories a day, and they would monitor her closely for a few days. She was admitted to PICU because she was so sick. Her heart rate was in the 30s, and the doctors were concerned about “refeeding syndrome”, which can occur when someone starts eating after not eating and becoming malnourished. “She agreed to eat and became very sick afterward. She was in extreme pain and vomiting profusely. Her heart rate shot up and they were scared we would lose her. The doctors in PICU actually listened to her and saw what happened when she ate,” Kerri says. In addition to scheduling a visit from an eating disorder specialist, they ordered a pediatric gastroenterologist consultation. “The eating disorder specialist did not take even an hour to determine that she did NOT have an eating disorder, but something was physically wrong. Erica wanted to eat and get better, but when you are 15, if something hurts, you don’t do it.”
The gastroenterologist ordered an endoscopy, which would allow them to see the inside of Erica’s stomach. They discovered a lot of old, undigested food sitting in her stomach. He also did not see her stomach contract like it should, and the first part of her small intestines had infection and ulcers caused by the food sitting there. “The next test was a “stomach emptying test”. She ate some radioactive eggs and sat under the x-ray machine for an hour to watch them in her stomach. After this, she was given the diagnosis of gastroparesis. We were relieved to finally have a diagnosis but did not realize at the time that this is not a diagnosis that anybody wants to get,” explains Kerri.
Gastroparesis is a condition that affects the stomach’s ability to empty food. The muscles in the stomach and intestines are not able to function properly, causing food to move through the digestive system too slowly or not at all. This causes nausea and vomiting and may cause problems with blood sugar levels and nutrition.
Erica’s doctors believe that a virus may have caused her gastroparesis, and if this is the case, the symptoms can improve over the years. But in most cases, this is a chronic illness and there are no treatments that will cure it. The condition may be caused by damage to the vagus nerve that controls the stomach muscles, but the cause of gastroparesis is usually unknown.
• A feeling of fullness after eating just a few bites
• Vomiting undigested food eaten a few hours earlier
• Acid reflux
• Abdominal bloating and pain
• Changes in blood sugar levels
• Lack of appetite, weight loss and malnutrition
Treatment options may include medications, dietary changes, feeding tube and/or botulinum toxin (such as Botox) can be injected into the pylorus, the valve that leads from the stomach to the small intestine. This can relax the valve, keeping it open for a longer period of time to allow the stomach to empty.
“The medications did not work for Erica, and at one time, she was taking six different ones. After coming home and trying to eat, she was back and forth to the ER with pain and bloating. She was up to 35 lbs. lost when they decided to try an endoscopy with Botox. This procedure can give some people temporary relief. We again went home from the hospital with high hopes. However, she was back at the hospital in a week after trying to eat and vomiting for 12 hours. At this time, she was down 40 lbs., and we were losing her again. This time, it was determined that she would need an NJ (nasal jejunum) feeding tube placed to get her back to health,” explains Kerri.
The doctors placed the tube with the use of x-rays to ensure that it would bypass her stomach and be placed into the second part of her small intestines, in an effort to eliminate her pain and bloating. However, the tube would not go through the first part of her small intestines because it was compressed. It was determined, at this time, that she had a blockage in her small intestines called SMAS (Superior Mesenteric Artery Syndrome). This very rare condition can be a result of extreme weight loss and would explain why the Botox did not offer her any relief. “The feeding tube was placed in her duodenum (first part of small intestine) and the plan was to drip the “feeds” in very slow for 20 hours a day. This was done at the end of May, she still has the feeding tube and the plan is to gain weight. They hope that as she gains weight, the SMAS will go away. She is up 14 lbs. to this day and has not let the tube slow her down!” says Kerri.
When Erica was discharged from the hospital with her feeding tube, she went straight to rehearsal for her dance recital. “Erica is only pain free and happy when she is dancing, that is why I had to allow her to dance her recital, tube and all. Her dance family has been amazing, a group of teenagers who have been nothing but supportive,” says Kerri.
Erica is scheduled to see a doctor at the University of Florida Health Shands Hospital who specializes in gastroparesis pediatric patients. She is hoping to start the new school year tube-free and pain-free. She plans to audition for her dance company in the fall.
“Erica is the strongest person I know, and I get all of my strength from her. She is fighting to live and be happy. She is dancing, swimming, and going to the beach. She still fights and plays with her seven-year-old sister, GiGi, who adores her and looks up to her big sister!” says Kerri. “She still cannot enjoy the foods she always has, but we hope that one day she will be able to eat a somewhat normal diet. She has good days and bad days, but on the bad days, her dad just reminds her to fight the good fight today. I believe that God has a plan, and Erica has a bright future ahead of her. She was meant to do great things, and she will!”