Meet Our Patients

I was diagnosed with a motility disorder called rumination syndrome. It is an uncommon disorder, which made diagnosing it extremely difficult. After four months of extensive testing I was sent to Nationwide Children's and was finally diagnosed. It began with severe heartburn and belching. It quickly grew into vomiting after every bite of food and sip of liquid. After being diagnosed, it was difficult to understand because there was nothing physically causing me to throw up. However, the manometry test helped to explain why the vomiting was occurring. Dr. Di Lorenzo and Dr. Linscheid worked to together to create a plan to trick my stomach into not knowing food was going into it. I would eat a crumb every hour until it stayed down then I would gradually increase the size. I also received biofeedback every day, which was extremely helpful. I was hospitalized for a total of 14 weeks, not consecutively. I had PICC line, a Broviac catheter, a GJ tube and a G tube to supplement my eating. I had my first meal after eight months with no vomiting. I no longer have any tubes and have been feeling great.

At age 3½ during a particularly bad bout of chicken pox, Sophia developed both urinary and bowel incontinence (24/7!), including severe abdominal pain and cramping. This devastating condition continued unabated for more than four years, during which time she was examined, tested and put through multiple invasive procedures by specialists in pediatric gastroenterology, urology, neurology and psychiatry in Toronto, Canada. She had to take more than a dozen different medications on a trial-and-error basis, to no effect, and often causing severe worsening of her condition. She also underwent a variety of alternative therapies, including naturopathy, homeopathy, massage, psychotherapy and others, and the many tests, supplements and other requirements of these treatments. Although she occasionally had a measure of relief with the latter, the effect was only temporary and repeated trials did not bring about repeat success.

Kathryn was born weighing 5lbs 3ozs. Although tiny, she appeared healthy. Then it became apparent that she wasn't gaining weight. We were sent to a pediatric gastroenterologist. After all the standard tests came back normal, the diagnosis would be failure to thrive (FTT). We sought out other opinions, including a trip to John Hopkins. They agreed the diagnosis was FTT, and suggested she be treated for an underlying feeding disorder. The decision was made to have a nasogastric tube placed. Right away the situation got worse; she was vomiting every night. I was told that she might be doing it on purpose, because she didn't like to feel full. In my mind I could not believe that. As a mother of four, I just knew something was wrong.

Madison struggled with chronic constipation that became progressively worse until she was diagnosed with anal achalasia and a motility disorder at age 3½. Since that time Madison has undergone approximately 14 surgeries ranging from botox injections into her internal anal sphincter to ileostomy revision related to an obstruction. The most difficult part of the diagnostic process was the not knowing. It took approximately a year and a half of blood work, testing and surgeries to determine that Maddi did not have motility within parts of her colon with absent ICC (interstitial cells of Cajal) cells. As it was one of the most challenging experiences in our lives we would not change a thing because in the end we were able to preserve part of Maddi’s colon. That is truly a miracle and we thank Dr. Mousa, Linda and Barb for preserving when we were ready to give up and remove the entire colon.

Kris, now 16, developed encopresis at age 4. The current sophisticated motility testing was not available at Nationwide Children's Hospital until Kris was 11. At that age, he underwent extensive motility testing before having a cecostomy irrigation catheter placed in his abdomen. Prior to that time, Kris was placed on a variety of medications and treatments. He was experiencing soiling every day, skin breakdown, abdominal pain and flatulence. Once the cecostomy tube was placed, Kris eventually developed a routine bowel pattern and most of the other symptoms disappeared. His intestinal tract eventually gained enough muscle strength that he no longer required the irrigation catheter. It was removed at age 16 and he is now being maintained on medication only. One challenge for Kris and his parents has always been to help support his self-esteem and self-image. He has participated in counseling over the years. His mother held classes to tell his teachers and classmates about Kris’ challenges. Educating those in Kris’ life about encopresis and the treatment involved has been a key point in his success.

Right now I am doing well. I haven’t had a flair-up since the middle of soccer season, which was early October and even though I had a blast, soccer was very stressful this year. I guess I would have to say that for me, when I was diagnosed with IBD it was a relief to know that it wasn’t cancer. And even though there was no cure, I was determined to get better because this was really messing with my life at that time (I was 12). So, I didn’t like the procedures, but it was because I was so dehydrated that I was just too sick to be poked anymore. I hated the steroids, but as my Mom says they did save my life. I guess for me, this was something that got in my way and I had to fix it and get on with life. Yes, I still take 20 pills a day and watch my diet to stay in remission, but because I do this I can still stay active and play sports. I also have horrible periods, which I have had to learn to deal with. And if a bug is going around I usually get it. I cannot imagine how others deal with the feeding tube, the weight loss and other issues. I think they are the tough ones! Yes I have aches and pains each day that I have learned to deal with (mostly arthritic). But I feel a lot more fortunate than others that have other nasty diseases and I watched my Papaw suffer and fight and eventually die this year with cancer and I just can’t complain with the little things in life when there are lots bigger ones that could happen.

Joshua is a gestation twin, who seemed very healthy at birth. But on day two of his life, Joshua was diagnosed with a disease called Necrotizing Enterocolitis or NEC. It is a deadly disease that kills the intestine in utero, and when food is introduced, leaks e-coli and other bacteria into the bloodstream. On day four of his life, Joshua underwent emergency surgery at Nationwide Children's to remove the “dead” intestine. He was left with 39 cm (out of 200 cm) of small intestine. At five weeks old, he had another surgery to re-connect his now “healthy” intestine. Progress was slow but steady. He came home 4 1/2 months later, the week of Christmas 2004, with his G-tube pump, a PICC line, and home TPN. His bilirubin went as high at 18 and his skin and eyes were orange. We increased his feeds as tolerated and he was gaining good weight. In April, he was able to stop TPN and in May we removed his PICC line. He has kept up very well with his development and growth. We were able to stop feeds with his pump in October and the surgeon removed his G-tube in December 2005. (Joshua is pictured here (right) with his twin brother Joseph)

Logan is now a happy, healthy, active 6-year-old after receiving a life-saving liver and small bowel transplant 5 years ago. Logan spent the first 15 months of his life hooked up to IV Nutrition (TPN), which was received through a central line in his chest. He also had a g-tube for enteral feeds. It was definitely challenging learning to take care of his medical needs at home, but through the dedicated and caring staff at Nationwide Children's, we felt very comfortable at home. Logan still visits the GI clinic once a month and is monitored with monthly lab work. He has no lines or tubes anymore, eats a regular diet and goes to school. We would be happy to talk with any family dealing with liver failure, intestinal failure, central lines, g-tubes, long hospital stays, etc.

Mathias was born without any signs of life, and the rescue was started very late. In spite of severe symptoms of reflux, breathing stops, swallowing difficulties with aspiration and stomach problems, we were told he was healthy, but at high risk of dying from SIDS (sudden infant death syndrome) when he was discharged from the ICU at three months old. After 14 months we went abroad from Norway to Portland, Oregon, where they saw his symptoms immediately and operated him within a few days. The combination of swallowing problems and reflux were too serious for Mathias, and he received a PEG in his stomach. This ended the breathing stops immediately. We went back to the USA several times. Mathias’ stomach emptied too slow, and the doctors in Portland referred us to Dr. Carlo Di Lorenzo in April 2008. We were welcomed greatly by Dr. Di Lorenzo and his team at Nationwide Children’s Hospital. They did a manometry where they tried different medicines, gastric emptying test, an upper endoscopy with biopsy, bacterial test and injection of botox in his muscle between his stomach and small intestine, pylorus. The big sack of symptoms finally got a name, Autonomic Nervous System (ANS) Dysfunction and spasms in the pylorus.

Isha is now 3 1/2 and doing great. Its easy to forget that she was a preemie and ever had any of the problems she did. The other day she looked at the scar from surgery and asked " What happened to me mommy?" I didn't know what to say, so I told her she was really sick but the doctors made her better. Im amazed at all she knows and understands at her age. My best friend is the only way to discribe her. She understands when I'm mad or upset and will stop at nothing to make me laugh. She is very outgoing and loving, and extreamly stubourn. She is bossy and very determined when she wants something. Recently there was a new addition and I was so afraid that she would feel replaced and resent her, but it was the complete opposite. She is so protective and caring, and is constantly wanting to help. She is an amazing little person who never stops surprising me.