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Rare and Complex Conditions

Rare and Complex Conditions
Gastric Bypass: Hope for Alexis
19
Mar 2014
Gastric Bypass: Hope for Alexis
Two and a half years ago I gave my daughter Alexis a kiss as she was wheeled into an operating room. The doctors told us that the surgery to remove a non-cancerous brain tumor called a craniopharyngioma would likely result in rapid weight gain after surgery, but nothing could have prepared our family for what
By: Jenny Shapiro | 38
Childhood Obesity
Hypothalamic Obesity: Miscommunication Between Brain, Gut
11
Mar 2014
Hypothalamic Obesity: Miscommunication Between Brain, Gut
Hypothalamic obesity affects the hypothalamus, which regulates communication from the brain to the stomach.
By: Thomas Inge, MD, PhD | 49
Heart Conditions
Animated Videos Illustrate Congenital Heart Defects
14
Feb 2014
Animated Videos Illustrate Congenital Heart Defects
Learn more about what your child's congenital heart defect really looks like with these animated videos.
By: Blog Editorial Team | 14
Heart Conditions
Olympic Athlete Shaun White Overcomes Congenital Heart Condition
08
Feb 2014
Olympic Athlete Shaun White Overcomes Congenital Heart Condition
The story of Olympic Athlete Shaun White demonstrates why adults with heart defects, like tetralogy of Fallot, should have life-long testing and care.
By: Christopher Learn, MD | 1
Cancer and Blood Diseases
None of Miles’ Friends Knew He Had Cancer
23
Dec 2013
None of Miles’ Friends Knew He Had Cancer
Miles was born on August 15, 2005. We were so excited to welcome our adorable baby boy into the world. He was everything we imagined he would be and we were thrilled the day we brought him home. Just a few days after he was born we noticed a small bump on his back. I
By: Molly Brown | 5
Rare and Complex Conditions
Savannah Spreads Holiday ‘Cheer’ Before Brain Surgery
11
Dec 2013
Savannah Spreads Holiday ‘Cheer’ Before Brain Surgery
Today, after months of planning, Savannah Day (pictured above in the middle) and her sisters finally got to see all of their hard work pay off. All in one place, in a super-sized mound of toys. When Savannah and her sisters set out to brighten the holidays for other kids spending Christmas in the hospital,
By: Blog Editorial Team | 2
Heart Conditions
Seacrest Studios Performance Was My Victory Lap
09
Dec 2013
Seacrest Studios Performance Was My Victory Lap
After receiving a diagnosis of restrictive cardiomyopathy, Liz turned to music. Read about her journey to receiving a heart transplant and how music helped her along the way.
By: Elizabeth Sampson | 1
Cancer and Blood Diseases
My Grandpa’s Letter Was A Beacon of Hope
25
Nov 2013
My Grandpa’s Letter Was A Beacon of Hope
In 2007 my grandpa was diagnosed with a malignant brain tumor. It was honestly one of the scariest times in my life. His type of cancer was sadly not curable. He went through a few surgeries and several rounds of chemo, none of which helped. One day at a get-together at my aunt’s house, my
By: Abbie Gebauer | 2
Cancer and Blood Diseases
Why 2009 Is So Difficult To Talk About
20
Nov 2013
Why 2009 Is So Difficult To Talk About
There are a lot of things that happened to my family in a very short period of time that changed our lives forever. In August of 2008, my father-in-law passed away from a brain tumor and in December of that same year, we lost everything in a house fire. It seemed as if things couldn’t
By: Karey Gebauer | 3
Cancer and Blood Diseases
Bayleigh’s Story | Why I Cherish Every Moment of Every Day
15
Nov 2013
Bayleigh’s Story | Why I Cherish Every Moment of Every Day
In August 2010 I noticed that my 16-month-old daughter, Bayleigh, was starting to fall a lot. She kept running into things and seemed really off balance. Of course, she was doing these things at the same time that she was perfecting her walking skills, so it was hard for me to know what was normal
By: Cambie Wilson | 7
Heart Conditions
Today We Celebrate Tiernee’s One Year Anniversary
08
Nov 2013
Today We Celebrate Tiernee’s One Year Anniversary
When you hear of someone celebrating a milestone, weddings, anniversaries and graduations probably come to mind. Today we celebrate a different kind of milestone: one year living with a Total Artificial Heart. One year ago today, Tiernee Gonzalez (pictured above, middle, with her care team) created history. On November 8, 2012, she became the first female
By: Megan del Corral, RN, BSN, CCRN | 4
Featured Faces
Life After Swallowing A Button Battery
03
Oct 2013
Life After Swallowing A Button Battery
Mother shares her story of discovery, diagnosis, treatment and life after her one-year-old swallowed a button battery.
By: Karla Rauch | 14
Cancer and Blood Diseases
Fathers, Survivor Bike 700 Miles in 7 Days to Defeat a Rare Immune Disease
01
Oct 2013
Fathers, Survivor Bike 700 Miles in 7 Days to Defeat a Rare Immune Disease
Claire Biagnardi is a little girl from St. Louis who likes to put on sunglasses and ham it up as she plays her toy guitar. But the 3-year-old is providing big inspiration for a group of men who are bicycling 700 miles in 7 days to raise awareness about a deadly disease called HLH. HLH
By: Blog Editorial Team | 0
Cancer and Blood Diseases
There is No Greater Gift
19
Sep 2013
There is No Greater Gift
September is a big month in our home for a few reasons. September is Childhood Cancer Awareness Month.  As a childhood cancer family, we try to spread the word as much as possible.  We wear gold.  We paint fingernails gold.  We plaster ribbons on our vehicles.  We write letters to papers and encourage support of families
By: Katie Clayton | 0
Rare and Complex Conditions
Advocating For Your Child: Some Practical Suggestions
17
Sep 2013
Advocating For Your Child: Some Practical Suggestions
We talked last time about becoming an advocate for your child and what that involves, but it can still be hard to know how that plays out in the daily mess of appointments, phone calls, school meetings, and even social situations. Here are five tips that I’ve found to be consistently true and helpful. 1.
By: Annie Kratzsch | 0
Featured Faces
Becoming Your Child’s Advocate: What Does It Take?
13
Sep 2013
Becoming Your Child’s Advocate: What Does It Take?
I remember very clearly the day I chose to be an advocate for my son. We were at a neurology appointment, which in those days came every week or two as we tried desperately to get our hands on the reins of his catastrophic seizure disorder. This appointment was to determine the effectiveness of his
By: Annie Kratzsch | 1
Cancer and Blood Diseases
High School Athlete Overcomes Rare Form of Cancer: Chronic Myeloid Leukemia
06
Sep 2013
High School Athlete Overcomes Rare Form of Cancer: Chronic Myeloid Leukemia
Mother shares the story of her son's battle with Chronic Myeloid Leukemia. Read about how this high school athlete's common knee pain led to a diagnosis.
By: Nancy Young | 2
Rare and Complex Conditions
Coping with Pain from Ehlers-Danlos Syndrome
08
Aug 2013
Coping with Pain from Ehlers-Danlos Syndrome
Pain is different from person to person. Cincinnati Children's helps parents understand the signs of EDS and the ways to manage their child's pain.
By: Kenneth Goldschneider, MD, FAAP | 223
Rare and Complex Conditions
Epinephrine: it’s still our fail safe
05
Aug 2013
Epinephrine: it’s still our fail safe
A recent CNN news story sent shock waves through me. As a mother of a child with multiple food allergies, including nuts, I’ve always been mentally reassured by his epinephrine pen.  Wherever we go, whatever restaurant we eat at, I know that if my questioning and due diligence of food allergens on the menu fails,
By: Rachel Camper | 6
Cancer and Blood Diseases
Leaving Home
25
Jul 2013
Leaving Home
Leaving home to travel for a family member’s medical care is a difficult decision to make, but for so many of the families who choose to make a trip to Cincinnati Children’s, the right care makes the decision easier. And then it’s the leaving that becomes the hard part. Teresa’s daughter Emma has a condition
By: Kate Setter | 0
Cancer and Blood Diseases
Three Things that Every Parent Should Know About HLH
21
Jul 2013
Three Things that Every Parent Should Know About HLH
A mom shares with parents 3 vital pieces of advice about HLH, a condition that took the lives of her two sons.
By: Kristin Akin | 84
Rare and Complex Conditions
Understanding and Support in the Form of a Little Green Dress
21
Jun 2013
Understanding and Support in the Form of a Little Green Dress
There is a little green dress making its way around the world, bringing words of understanding, wisdom and support to the families of children diagnosed with a condition called CDKL5, and it recently made a couple of stops in the Greater Cincinnati area. Four-year-old Catie Castellini was diagnosed with cyclin-dependent kinase-like 5 (CDKL5) a few
By: Blog Editorial Team | 0
Featured Faces
Honoring the Super Dads
16
Jun 2013
Honoring the Super Dads
In celebration of Father’s Day, we’d like to take a few minutes to honor the fathers of our patients. I had the pleasure of meeting one particular dad this week, many people told me he’s a “Super Dad” – and I’m inclined to agree with them. Josh Quinn is Brodie, Jenna and Caleb’s dad, and
By: Kate Setter | 0
Featured Faces
Lights, Camera, Spencer
14
Jun 2013
Lights, Camera, Spencer
Meet Spencer. He is a super smart, always energetic 6 year old boy with a big personality. He, along with six other Cincinnati Children’s patients, recently participated in a photo shoot to capture the images for our new advertising campaign that will debut in Greater Cincinnati this weekend. Although Spencer has had his share of medical
By: Kate Setter | 4
Rare and Complex Conditions
You want my child to wear WHAT?
03
Jun 2013
You want my child to wear WHAT?
It’s a question parents ask me quite often. It might not be in those exact words, but the implication of surprise is there. Their initial reaction is fair — for parents of children younger than four with early-onset scoliosis, I often recommend a full-torso cast, or Mehta cast, to help correct the curvature of their
By: Dr. Peter Sturm | 9

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