Stories about: Diseases & Conditions

Your child and chronic pain: How to ‘dial down’ the agony

Mom comforts teenage daughter who has chronic pain
PHOTO: ADOBE STOCK

Sheer panic. It’s all I can remember.

Out of the blue, while enjoying his morning snack one day, my toddler started having seizures. And they didn’t stop. It was terrifying. He was admitted to the intensive care unit. Between seizures he was scared, flailing on the hospital bed, totally out of control. I wanted desperately to help soothe him but didn’t know quite what to do. My first intuition was to distract him. I remember grabbing a jungle pop-up book out of my diaper bag and springing the pictures open right in front of his face to block out all the doctors scurrying about. I made loud roaring sounds like a tiger to drown out all the scary medical noise. It didn’t help.

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Manny: Hoping new research helps others with sickle cell disease

Manny, who is in a clinical trial for sickle cell disease, is examined by his doctor.
Manny at a visit with Dr. Esrick [PHOTO: SAM OGDEN/DANA FARBER]
Emmanuel “Manny” Johnson, Jr., shares many loves with his little brother, Aiden — from basketball to video games. One thing he wishes they did not share is sickle cell disease (SCD), so Manny is playing a role in a new effort to improve treatment for patients like 7-year-old Aiden, himself and others living with the inherited blood disorder.

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Finding my happy place: Staff member with IBD offers tips to patients

Julie, who has IBD, stands on Kodiak Island in green boots
Julie hiking Kodiak Island in Alaska [PHOTO DESIGN: PATRICK BIBBINS/BOSTON CHILDREN’S HOSPITAL]
When I was in high school, I started developing issues with my gut. Being in pain and taking frequent trips to the bathroom became part of my life, but it wasn’t until I started seeing bloody stool that I decided to see a doctor.

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Living his best life: Caring for Christian

little boy with short bowel syndrome wearing a fedora
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

Christian Jaspersen was wet, muddy — and having the time of his life. After an ATV ride around his family’s rural Oklahoma farm with their grandfather, he and his two older brothers plopped themselves into a nearby mud puddle, playing with toy trucks and getting wonderfully messy. “For a while, we didn’t know if Christian would be able to have a ‘normal’ childhood,” says his mother, Rachel. “Having these experiences now is just so special.”

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