As you read this, local 6-year old Ellie Smith is on a trip. It’s not a pleasure trip.
After trudging through periods of severe abdominal pain and or vomiting since September that led to the discovery of a large polyp in her stomach, Smith, you see, has been diagnosed with Peutz-Jehgers Syndrome.
Smith’s mother, Jessica Smith is a nurse, but she confesses, she had no idea what that was prior to the diagnosis. What Smith and her husband, Mark, first assumed to be "kindergarten germs," know, now, is a Peutz-Jehgers Syndrome is a rare genetic disorder.
A second bout of abdominal pain was accompanied by vomit and a third a belief that it might be a reflux issue, says Jessica. Reflux medication was of no help.
"Bless her heart, all she wanted was to go to school but she had to miss several days due to this," said Jessica.
The child had required surgery for a stomach issue earlier in life but there was nothing to suspect the now two stomach issues were related, so by January, with no noticeable improvement in the situation, the Smiths took her to a pediatric GI doctor.
Eventually an EDG was scheduled, which led to the discovery of the polyp, which was so large surgery would be required for removal. It was during that procedure the doctors discovered freckles on her lips and inside her lips and this is known to be consistent with the Peutz-Jehgers.
Continued problems led to a second EDG and a colonoscopy that "praise God was completely normal. While she was under for her procedure, they drew her genetic lab work to test for the syndrome," said Jessica.
"The suspected reason Ellie is having episodic pain is due to polyps in her small bowel," Jessica adds. "However, this is a near impossible area to visualize. The polyps can cause the bowel to get stuck inside itself which cuts off blood flow. Thankfully, so far, her episodes have all been considered intermittent and relieved without intervention. However, this can be very serious if it does not resolve and would require emergency surgery."
Still, that bowel must be examined, Jessica said. For that the selected procedure is a "pill camera."
That was tried on May 15th after about a week long bout of vomiting and pain, says Jessica.
"They went in with the scope to place the pill past the stomach to give it a head start. So, the camera was placed, meds were given to speed up her peristalsis and after post op released her we went to run around Little Rock to let the pill work its magic."
By design, the pill was supposed to take in the neighborhood of 5,000 pictures over the eight-hour period.
"A week later we got a call from her doctor saying that they really weren’t certain why, but the capsule instead of going on through the bowel, came back into her stomach and never left her stomach the entire 8 hours," said Jessica. "Dr. Vonlanthen said. ‘Ellie’s body just marches to the beat of its own drum.’"
Then the doctors decided it would be best to find a doctor who specializes in a type of scope, DBE, that reaches the small intestine. Jessica did her own research and they all came to the same conclusion that place would be Nationwide Children’s Hospital in Columbus, Ohio.
The Smiths were to arrive in Buckey country on the 18th, see the doctor today and have the procedure tomorrow (Thursday).
"We are hopeful that the issue can be resolved by the specialties Ohio has to offer," said Jessica. "The doctor we will see is considered the leading expert in the nation in this procedure."
To help defray the costs of the trip friends organized a barbecue lunch fundraiser last Friday at Booneville Community Hospital, where Jessica works.
"We can’t begin to thank everyone enough for the concern and especially the prayers," said Jessica."We are so humbled by the outreach we have received."