At Nationwide Children's Division of Gastroenterology, Hepatology and Nutrition, we realize that emotional support is every bit as important as medical treatment. That’s why we want you to meet some of our patients, who, like you, are dealing with the daily challenges of gastrointestinal, liver and nutritional problems. Some will give you tips on successful methods for helping with the countless things you encounter on a day-to-day basis, while many also will give you their contact information, so you can get to know them even better!
Kole was born in Virginia to parents that were in the USA illegally. At 24 hours he developed complications and was taken to the operating room. Over the course of several weeks, he had all but 10 cm of his small bowel removed leaving him with short bowel syndrome and dependent on IV nutrition (TPN). His parents knew he would not survive in Mexico so they placed him for adoption with the goal of placing him with a family with access to the best GI care available. Kole was adopted by a wonderful family here in Columbus and is now 3.[read more...]
While Kole is still IV-dependent and receiving tube feeds, he is a typical active 3 year old that loves playing with cars, swinging and visiting his favorite doctors and nurses at Nationwide Children’s Hospital. Kole is doing so well due to the incredible care he receives. He is an inspiration to everyone he meets with his great smile and outgoing personality. His motto is “Have backpack, will travel” - being hooked up to TPN 17 hours a day does not keep him from living his life to the fullest and making the best of every situation. Kole and his family are proud to give back to their community and represent all patients at Nationwide Children’s Hospital![hide]
Shortly after Nicholas was born, we noticed some difficulty with spitting up. Because his older brother had a history of allergies and reflux, we quickly started an elimination diet. At his two week appointment, which happened to be almost a week late, I was planning to switch his formula to a more expensive, prescription formula with the pediatrician's approval. But she suggested we take him to Nationwide Children's for an abdominal ultrasound "to rule out" a physical problem. It turns out she saved Nicholas' life.[read more...]
After the ultrasound, the doctor sent us to the ER where we were admitted and Nicholas underwent surgery the next day for pyloric stenosis, a condition where his stomach contents are unable to exit the stomach into the intestines and instead are vomited up. He was literally starving to death. Nationwide Children's worked with us in the coming months, as he needed a second dilation of the pylorus and continued to have allergic and reflux symptoms. Now, Nicholas is 21 months old and on a restricted, but nearly normal diet. Nationwide Children's Hospital saved Nicholas' life, and continues to help him grow and thrive.[hide]
I am 17 years old and I was diagnosed with a motility disorder called Rumination Syndrome. For almost 3 years I threw up almost everything that I ate or drank. I lost 25% of my body weight and was placed on an NJ feeding tube to help me maintain my weight and nutrition. My doctors considered putting me on a permanent feeding tube because they did not know of any other methods of treatment to help me.[read more...]
I was tested extensively, but none of the many professionals I saw were able to provide me with any answers or treatments that could stop me from throwing up. I was, however, advised that there was no physical cause for my condition. I eventually became too weak to go to school or participate in normal activities. After almost 3 years I was fortunate enough to be referred and admitted to Nationwide Children’s Hospital in Columbus, Ohio. I stayed at Nationwide Children’s for one week, in which time they were able to retrain my stomach to accept food and liquids. By the time I was discharged from Nationwide Children’s I was able to eat and drink normally again. After only a few months of being discharged I found myself able to eat complete meals without throwing up.
My whole life has changed thanks to the expertise and compassionate care that I received from the doctors at Nationwide Children’s. I’ve gained weight and I feel much stronger. I’ve been able to resume a normal life and it’s been years since I was so happy and carefree. If you or anyone you know has Rumination Syndrome I would strongly recommend that you seek help at Nationwide Children’s.
Erin’s mom will never forget the feelings of fear and helplessness as she walked alongside her husband who was carrying their 8-year old daughter, Erin, into Nationwide Children's Hospital’s Emergency Department because she was too weak to walk. The Dunne’s knew there was something gravely wrong with their bright, happy little girl, and they were desperate for answers.
Three weeks before they made the 2-hour drive from their home in Findlay, Ohio, to Children’s, the Dunne’s took Erin to their family doctor because of flu-like symptoms. The doctor diagnosed a viral infection and told them it would run its course. By the third week, Erin had no appetite, no energy, and she had lost 25 pounds, weighing just 40 pounds. Erin’s parents were scared, frustrated, and growing anxious. They insisted on a second opinion, and brought her to Nationwide Children’s.
Within 45 minutes of Erin’s arrival in the Emergency Department, doctors made an initial diagnosis that Erin had Crohn’s disease. Tests confirmed this assessment: a massive lesion found in her colon was causing internal bleeding. She was admitted to the GI unit where she received intravenous steroids and an IV for nutrition to restore her health. Within a few short days, Erin had regained her strength and stamina, and she was able to go home a much healthier child than the one who couldn’t even walk into the hospital on her own.
These days, Erin is an outgoing, curious and mature 12-year old who takes ownership and responsibility for her disease. She enjoys the outdoors, playing soccer and rollerblading.
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.
Upon the recommendation of her GI specialist at Toronto Sick Kids Hospital, Sophia was referred to Dr. Carlo Di Lorenzo at Nationwide Children's, who graciously agreed to see her in May of 2005.
Thanks to Dr. Di Lorenzo and the Motility specialists and staff, Sophia was properly tested, diagnosed with a neuropathic motility disorder of the colon, and commenced a course of treatment that, within about three months, brought about remarkable improvement lasting to this very day! She continues to be monitored by Dr. Di Lorenzo.
Sophia has now turned 11, will be going into sixth grade this fall, and is enjoying a wonderful quality of life. She continues to have a parallel motility issue of the bladder (owing to its unusually small size), but daily low-dose medication gives her complete control now - whereas, prior to the placement of the c-tube, bladder-related interventions did not work at all!
Sophia loves school, art, writing, drama, sleepovers with her friends, and remains intent on becoming a zoologist. She is cheerful, personable and the first to offer her support to others. Sophia is determined not to allow her motility issues to ever get in her way!
Favorite Color: Indigo
Favorite Food: sausage rolls
Pets: Cats (someday, when I have my own home – my mother and older brother are allergic!)
Siblings: Older brother William, younger brother Alexander – Sophia adores them and the feeling is mutual. They are very close and all understand pain and discomfort: William suffers from chronic intractable migraines (since age 6) and, after many investigations and medications, relies on regular Botox injections to manage. Alexander is severely far-sighted and very dependent on his eyeglasses. Both the boys and Sophia have experienced a good measure of teasing, bullying, and misunderstanding from their peers, but manage to get through this with humour, cheerfulness, self-determination and love!
Hometown: Toronto, Ontario, Canada
Favorite Book: The Bible (and she loves to read, especially books dealing with zoology)
Favorite Sport: Gymnastics (in fact, any and all, as long as they are active!) Sophia is believes in “fit mind, fit body”!
Web sites we found useful:
http://www.childhoodconstipation.com/ re: latest findings and insights – very balanced
http://www.nlm.nih.gov/medlineplus/ re: pediatric constipation medications & supplements, their pluses, minuses, and idiosyncrasies – very useful
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.
The NG tube lasted for 15 months. During that time, we had a dietician, a feeding therapist and a behavioral psychologist coming to our house. Kathryn also became a patient at a feeding and swallowing center. Their technique was non-refusal. When this did not work, her GI physician told me that as a last resort, he wanted to have manometry testing done by Dr. Di Lorenzo at Nationwide Children's Hospital.
In September 2004, we spent a week at Nationwide Children's. It was there that Dr. Di Lorenzo and Dr. Hayat Mousa did both antroduodenal and colonic manometry testing. The tests diagnosed a neuropathic pseudo-obstruction. This is a name given to a rare disorder that causes impaired gastrointestinal motility. Although sad, it was a relief to know what was wrong with my child. I was very grateful that someone finally diagnosed her, and we could begin the next phase of our journey. The doctors explained that Kathryn would benefit from a GJ tube. The theory would be to bypass the problem as much as possible.
In February 2005, Kathryn's GJ tube was placed. There have been many ups and downs. However, what Dr. Di Lorenzo and Dr. Mousa said would work, has. Kathryn is almost 4, and weighs almost 36 lbs. She currently is in the 47th percentile. She eats small amounts and gets most of her nutrition from her tube feeds. The doctors feel that Kathryn should be able to get half her calories from oral intake and half from tube feeds. This is a work in progress. And we're working on it!
Favorite Color: purple
Favorite Food: corn on the cob!
Pets: Cookie, her dog
Siblings: Diana, Gary and James
Hometown: Smithtown, New York
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.
Maddi currently has a colostomy and our plan is to close her colostomy when she is 10 years old to give her the best opportunity for it to succeed.
Other areas that we find challenging are taking several medications a day, daily stoma care, pain management and ensuring that Taylor, Maddi’s sister, gets enough attention too. Ways that we have dealt with this are having a reward system for taking her medications, having Maddi assist with the daily stoma care and having Maddi do deep breathing when she experiences pain. In order to ensure that Taylor gets enough attention we provided emotional support by having her take a vitamin when Maddi takes her medications, include her by getting things for me when doing the stoma care and we try to provide one-on-one time when possible. As things do not always go as planned the above interventions have assisted us in getting through some very difficult times.
Favorite Color: blue
Favorite Food: apples
Pets: Dog named Coco
Hometown: Powell, Ohio
Favorite Book: David Listen
Favorite Sport: Soccer
Web sites we found useful:
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.
Even during the most challenging times, Kris has remained very active. He is very athletic and has played volleyball, basketball and baseball, and he is a weight lifter. He is socially active and does well academically. His positive attitude, along with the support of family and friends, has been instrumental in his progress towards normalcy in his life. We are very proud of his attitude and outlook.
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.
I just got accepted to play college softball for Muskingum College and I am on cloud nine right now. God has been good to me and I am praying daily for all of the little ones that have this disease and especially for the new ones. You have to fight and not let it stop you. Oh, it tried in the beginning but it only made me mad! And I guess for me that is what I needed to get better. Oh and having the best doctor in the entire world that loved sports also (Dr. Wallace Crandall) didn’t hurt either!
Favorite Color: Blue
Favorite Food: Taco Bell
Pets: Pepper, my dog
Siblings: Allison (sister, freshman at Capital University) and Alex (brother, 13 – that wonderful age!)
Hometown: Zanesville, Ohio
Favorite Book: Harry Potter (all of them) and Lord of the Rings
Favorite Sport: Softball, soccer comes in at a close second
Web sites we found useful: www.ccfa.org
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)
Favorite Food: everything
Pets: Jack Russell-mix named “Winnie”
Siblings: twin brother Joseph
Favorite Book: Old MacDonald
Favorite Sport: eating contests with his twin brother
Logan is now a happy, healthy, active young boy 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.
Favorite Color: Blue
Favorite Food: Grilled Cheese
Favorite Activities: Swinging and jumping on the trampoline
Pets: 1 cat
Siblings: Avery, younger sister
Hometown: Lewis Center, Ohio
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.
The last visit at Nationwide Children’s Hospital has given us a diagnosis that explains everything, and they have started treatment that has made Mathias’ life much easier. This treatment is still going on today through Nationwide Children’s Hospital even though we are back in Norway. Today Mathias eats food and tolerates this much better, and he can for the first time in his life be outside alone playing with his friends without an adult watching him.
This story is a thank you for all the help we have received there. We want to thank doctors, nurses, staff and volunteers. We even stayed for free at the hotel as long as we were at the hospital, and we are touched to tears from all the help we have received.
Thank you Ohio for everything!
Favorite Color: Green
Favorite Food: Pizza
Siblings: 2 sisters, 1 brother
Hometown: Oslo, Norway
Favorite Book: Anne Franks Diary
Favorite Sport: Soccer
It's easy to forget that Isha 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. I'm 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.[read more...]
Since her last hospitalization she hasn't had any major problems. We had a hard time getting her G Tube site to close. They took it out almost two years ago and its just now closing up all the way. She still has loose stool on occasion and has trouble gaining weight, But other than that she has no other problems. No developmental problems, no seeing or hearing problems and no behavioral problems. She and I are truly blessed. And for parents who lose hope, stay strong because it will get better, and when you look at the pictures or think back it feels like your reading or looking at someone else's life, because you will have come so far. Every positive step even if its a small one is a step toward a healthier child.
Favorite Color: Red
Favorite Food: Sweet potatoes
Hometown: Franklin County/Columbus, Ohio
Favorite Book: Winnie the Pooh Talking Book & Slide and Learn Storybook