On August 25, 2011 Landon’s parents, Leslee and Scott, began to notice loose stools and nocturnal bowel movements when changing the diaper of their 16 month old son, Landon. By September 3, the loose stools started to contain blood and Leslee and Scott took Landon to the Emergency Room where the ER team took stool samples. The prognosis was that Landon most likely had some kind of virus. He was released and his parents were told not to worry about the blood in his stools, it seemed to be irritation from the diarrhea. September 6, 2011 Leslee and Scott followed up with Landon’s pediatrician who agreed with the ER doctor about the source and condition of Landon’s stools.
September 2011 through December 2011, Landon’s stools were still loose and bloody. Leslee and Scott utilized numerous food journals in an effort to figure out if Landon’s symptoms were due to food toleration. His symptoms were up and down, though the elimination diets seemed to help somewhat. They kept in touch with Landon’s doctors and everyone agreed it was a virus and possibly food intolerances causing his continued symptoms.
In October 2011, Leslee and Scott took Landon back to his pediatrician hoping for an answer as to why he was still having loose stools. They took more stool samples, ran numerous tests, and everything came back negative.
By December 2, Landon’s daily bowel movements had increased and consisted mostly of blood. Desperate to receive answers, Leslee called Landon’s pediatrician to get a referral to a GI doctor. Landon was very lethargic and by December 4, he had stopped eating and drinking.
Monday December 5, Leslee received a return call from the pediatrician’s office to confirm Landon’s appointment with a local pediatric GI in two weeks. Leslee expressed concern about his loss of appetite and decided to bring him in to the office to be checked out. Landon was very pale, the doctor and Leslee agreed that he should have a Complete Blood Count test to see where his levels were. Within 15 minutes of leaving the office, Leslee received a call back and was informed Landon’s hemoglobin was at 5 and that he was to be taken immediately to the hospital. Landon was express admitted and the next day Scott and Leslee met with a local GI doctor.
While the Doctor was conferring with his parents, Landon had a bowel movement that was mostly blood. The Doctor was extremely concerned and told Leslee and Scott that Landon’s hemoglobin was probably at 4 by that point and he needed a blood transfusion immediately. Within a few hours he was receiving his first of many transfusions. Later that afternoon, he went under sedation for the very first time while they performed a scan for Meckel's Diverticulum. The scan came back negative. All the while, Landon was still losing large amounts of blood and was having approximately 12-16 bowel movements within a 24 hour period. Wednesday December 7, still hospitalized, Landon went under sedation for a second time to undergo an endoscopy and colonoscopy. The results were clear and he was diagnosed with ulcerative colitis. Landon was immediately put on IV Prednisone and he began to show some immediate improvement.
Thursday December 8, Landon’s IV went bad and had to be removed. The IV team tried again and again to insert an IV in a new site, without success. Landon was unable to receive any more IV Prednisone so they began giving it orally, at a much lower dose. The little progress he had made halted. The next day, several nurses attempted to insert a new IV and all attempts were unsuccessful. On December 11, Landon went under sedation to have a central line put in. He was immediately put back on IV Prednisone along with a couple of antibiotics, in case he had picked up some type of bacteria in the hospital. Landon’s family and friends prayed for recovery so he could go home.
A week later, he was not getting better, and had actually began to decline. Because of his body’s inability to heal and the continued blood loss, Landon was sent by life flight to Children’s Mercy Hospital in Kansas City on Sunday, December 18. Leslee accompanied Landon on his first airplane ride and Scott followed by car. Since Landon already had a central line, Leslee and Scott felt relieved that he would not have to undergo another horrific ordeal at an attempted IV stick. Shortly after his arrival at Children’s Mercy Hospital, doctors ordered a feeding tube which would provide a slow drip of Golytely into Landon’s stomach to induce bowel movements. This would clear Landon’s GI tract and prepare his body for his second colonoscopy. In addition, Landon tested positive for a VRE, which he contracted while hospitalized in Wichita. The diagnosis of VRE kept him quarantined to his hospital room for the remainder of his stay.
Monday, December 19, Landon was sedated while the doctor performed another colonoscopy, which once again confirmed ulcerative colitis. Immediately following the colonoscopy, in response to the biopsy’s taken, Landon’s hemoglobin dropped a whole point and he was given a blood transfusion. The doctors talked with Leslee and Scott about the possibility of surgery to remove Landon’s colon and recommended that Landon be put on Remicade as a last resort before surgical removal of his colon. After numerous attempts at inserting a fresh IV for the Remicade infusion, the decision was made to insert a PICC line, through which Landon would receive his medications and nutrition. In hopes that the combination of medications and natural treatments would help Landon to recover, Landon had already been receiving NeuroModulation Technique (NMT) treatments while hospitalized in Wichita.
On Wednesday, December 21, Landon received yet another blood transfusion. A few hours following his transfusion, a surgeon came in to assess Landon. He told Leslee and Scott that surgery was imminent and he put Landon on his schedule for Friday morning, December 23. The last thing Leslee and Scott wanted was to have Landon’s colon removed. Dr. LeslieFeinberg and two additional NMT practitioners continued with remote treatments. Leslee and Scott prayed all night, asking for answers, and for the strength to make the right decision for Landon. On Thursday morning, Landon woke with no blood in his diaper. Overnight, his bleeding had abruptly stopped. The doctors were astonished by Landon’s progress and told Leslee and Scott that they were taking him off the schedule for surgery.
On Christmas Eve, Landon was released from the hospital, just in time to have Christmas with his family in Wichita! The holiday was joyous, but this miraculous turnaround was short lived.
In January of 2012, Landon had started losing blood in his bowel movements again. Landon became very lethargic and uninterested in eating and drinking again, even though he was on Remicade, prednisone, and antibiotics. On January 29, Leslee and Scott took their son back to the ER in Wichita where they discovered his hemoglobin had dropped back down to 6.7. Landon received a blood transfusion in the ER and the ER doctor spoke with Landon’s team at Children’s Mercy. They all agreed that Landon and his parents should return to Kansas City. On January 30, Landon was admitted to Children’s Mercy. The next day, the nurses inserted a feeding tube to clear Landon’s system in preparation for his third colonoscopy and endoscopy. On February 2, Landon was sedated again for his procedures. Immediately following, Landon had a PICC line inserted so that he could receive Total Parenteral Nutrition. The doctor who performed Landon’s scopes, in his profession for more than 30 years, said Landon’s colon was the most inflamed he had ever seen in a child his age. Once again, Leslee and Scott were advised to either have Landon’s colon removed or have a diversion surgery. This recent set back in his condition had prompted Leslee and Scott to do research in hopes of finding an alternative to surgery for Landon, who was already living in an immune suppressed state. This research led them to Dr. Mark Davis, a doctor in Oregon who offers a clinic for Fecal Microbiota Transplant. Armed with this new found treatment and the determination to avoid having Landon’s colon removed, they approached their GI doctor at Children’s Mercy with their idea to explore an alternative to surgery. When Leslee and Scott discussed FMT with Landon’s pediatric gastroenterologist, Dr. Stephanie Page, Dr. Page said that she had heard that FMT works, though she had never heard of a child Landon’s age undergoing the procedure. Following several more blood transfusions and an additional week of observation, Landon was released from Children’s Mercy. Leslee and Scott started making preparations for Leslee and Landon to travel to Portland, Oregon to begin FMT with Dr. Mark Davis.
Landon and his mother traveled to Portland, Oregon at the end of February of 2012, where they began their first round of Fecal MicrobiotaTransplant. This consisted of nightly FMT’s and lasted for approximately 3 weeks. He made some significant improvement over those weeks, however, began to relapse again shortly after stopping the FMT. In August of 2012, after a rapid decline in his health, Landon was not doing well. He underwent another round of nightly FMT enemas. This round lasted six weeks, but was done at home (under the guidance of his doctor in Portland) with Landon’s mother as his donor. During this time, Landon had his first visit at the Vis Clinic with Dr. Rebecca Kirby where they did the LEAP test to determine what foods may be causing inflammation in his body. Following guidelines set by Dr. Kirby, Landon started taking large amounts of probiotics and changed his diet dramatically. He went to a vegan style of eating and eliminated all grains as well. Slowly but surely, improvement happened. He began to have fewer and fewer bowel movements each day, and his nocturnal bowel movements stopped altogether. By December of 2012, the blood and mucus were gone completely and he was having approximately 3 bowel movements daily. It has been challenging for his parents to continually monitor his foods and ensure he is getting the proper nutrition, while he remains on a somewhat strict diet. Landon has been able to incorporate more and more foods with each passing month, due to the help of Dr. Kirby and yearly testing for food sensitivity. Today, he is still grain free, with the exception of rice and occasional cornmeal. He is able to tolerate eggs, chicken, turkey, beef, fish, most fruits and vegetables, and some dairy. He is growing and hitting all the milestones a typical child his age would reach. Landon has been a pioneer in treatments that may not have been recognized by doctors a few years ago. He is off all medications and is maintaining his health through proper diet and quality nutritional supplements. He is continuing to pave the way and fight for a better world, where those living with IBD can find hope for a bright future!