Archive for short bowel syndrome
Catching up with Lucas eight years after his multivisceral transplant
Lucas and his mom, Heather, aren’t shy talking about his health journey and his multivisceral transplant. “If other families can learn something from Lucas’ story, it would be to keep advocating for your child and to trust that gut feeling,” Heather says. “Without organ donors, Lucas would not be here today.” Lucas was born with ... Read More about Catching up with Lucas eight years after his multivisceral transplant
Studies pinpoint risk factors for complications of pediatric intestinal failure
Pediatric intestinal failure occurs when patients lack the amount of intestine necessary for growth and development. As advances in treatment have led to better survival rates for children with short bowel syndrome and other forms of intestinal failure, the team at Boston Children’s Center for Advanced Intestinal Rehabilitation (CAIR) is studying factors that affect quality ... Read More about Studies pinpoint risk factors for complications of pediatric intestinal failure
Finding specialized care for short bowel syndrome: Meet Makai
Eric Maldonado was picking up some groceries one day last fall when he saw a familiar face: The woman, a nurse in his local hospital’s neonatal intensive care unit (NICU), had helped care for his son Makai earlier that year. “She asked how he was doing, because she remembered that he had been an angry ... Read More about Finding specialized care for short bowel syndrome: Meet Makai
‘Never stop looking for answers’: Andrea’s journey with dysmotility
As a volunteer at Caritas Internationalis, Andrea Hernandez loves helping feed the hungry. Yet, until recently, Andrea herself was unable to eat by mouth, instead relying on a feeding tube for nutrition. Nevertheless, she says that when it comes to her health, “We are fed with hope.” Andrea, now 23, has experienced severe dysmotility problems, ... Read More about ‘Never stop looking for answers’: Andrea’s journey with dysmotility
A taste of childhood: One family’s journey to an IV-free diet
Children with short bowel syndrome often miss out on childhood’s simple and delicious pleasures, like birthday cake, pizza, and ice cream. But Dr. Lissette Jimenez and the team at the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital are working to change that. Short bowel syndrome is caused by the loss or lack of function of the small intestine, ... Read More about A taste of childhood: One family’s journey to an IV-free diet
Doing everything possible for Gabby: A team approach to short bowel syndrome
Gabriel “Gabby” Lopez loves everything hot and spicy. “He will eat a ghost pepper without hesitation,” says his mother, Mayra. “He eats more spicy food than a grown man.” It’s an impressive feat, not only because Gabby is just 3 years old, but also because he has spent the majority of his life receiving his ... Read More about Doing everything possible for Gabby: A team approach to short bowel syndrome
Growing up with short bowel syndrome: Follow-up care matters
Short bowel syndrome, a serious condition in which a child lacks sufficient small intestine to absorb the nutrients the body needs to grow and thrive, was once a devastating diagnosis. Today, advances in care have helped save — and change — the lives of many kids with this disease. In fact, the multidisciplinary approach taken ... Read More about Growing up with short bowel syndrome: Follow-up care matters
Going back to school with a chronic condition
Going back to school can be a time of excitement for many families: Your kids are looking forward to reconnecting with their friends — and you’re looking forward to watching them learn and grow. But for caregivers of children and teens with chronic or complex conditions, preparing for a new school year involves much more ... Read More about Going back to school with a chronic condition
Vitamin D: Absorption matters
If you’ve been hearing more about vitamin D recently, that’s because a growing number of studies have linked this nutrient to a range of potential health benefits, from a lower risk of flu to protection against cancer. Although the evidence isn’t firm for all of the many claims made about vitamin D, we do know ... Read More about Vitamin D: Absorption matters
Leading the way: Ava’s experience with teduglutide
Ava Orsini visits Boston Children’s Hospital every two weeks. It’s more time than any kid wants to spend at a hospital, particularly when she lives a state away. But for this 9-year-old and her parents, the trips are worth it: For the past two years, she’s been participating in a clinical trial of a drug ... Read More about Leading the way: Ava’s experience with teduglutide