Jan 01

Down Syndrome Research Also Can Benefit Other Health Conditions

For National Birth Defects Prevention Month, Speak Now for Kids is highlighting various birth defects and resources available to help in promoting birth defects prevention.


NDSS_logo_1-2017.jpgFor those who observe National Birth Defects Prevention Month, people with Down syndrome have something special to offer. They offer enormous potential for scientific discoveries that can provide new insights into how to better treat people with other health conditions that are also common in people with Down syndrome.

According to the National Institutes of Health (NIH), at least one-half of all children with Down syndrome have one or more co-occurring conditions, which include Alzheimer’s disease, childhood leukemia, congenital heart disease, autism spectrum disorders, sleep apnea and epilepsy. People without Down syndrome who live with these conditions have the potential to benefit from a concerted and coordinated interdisciplinary effort to examine their correlation and impact on individuals with Down syndrome.

 

Dec 20

Thank You for Making a Difference

As the 114th Congress comes to an end, we would like to thank you! We have been blown away with the sheer number of messages sent to Congress this year. Though the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act) didn’t pass this year, your collective voices have been instrumental in shining a light on its importance. 

Dec 15

Family Battles Rare Combination of Conditions

This originally appeared in a recent issue of Children’s Hospitals Today


A complete nutrition overhaul helps a 9-year-old thrive.

By Christine Bush

els_page.jpgWhen Els was 9 years old, Jennifer Page brought her son to his wellness checkup thinking it was a routine visit. But the pediatrician uncovered several health conditions sending the Page family on a path requiring life-changing action. At the checkup, Els' doctor diagnosed him as overweight and suspected he was beginning puberty early.

Follow-up tests determined Els had premature adrenarche, a hormonal disorder with the adrenal gland secreting sex hormones earlier than normal, and he was bone age advanced. In most cases, premature adrenarche does not require treatment, but in Els' case, his bone age was about three years too far along. Left untreated, Els' bones would fuse early and he may not grow taller than five feet.

Nov 16

Life with a Child who has Type 1 Diabetes

During the month of November, parents of children diagnosed with type 1 diabetes will share testimonials with the Speak Now for Kids community. You can learn more about this chronic condition, which is usually diagnosed in children and young adults, by visiting the Juvenile Diabetes Research Foundation (JDRF).


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Samson was diagnosed with type 1 diabetes (also known as juvenile diabetes) about two weeks before his second birthday, after we had contacted his pediatrician about to his frequent urination and weight loss. Shocked and confused at first, we were blessed to have a wonderfully encouraging team ready to take care of us when we arrived at St. Joseph’s Children’s Hospital. Our endocrinologist, Dr. Grace Dougan, and our diabetes educator, Juliana Hite, gave us lots of support and listened to our questions and concerns. They reassured us repeatedly that Samson would live a healthy and active life, and he does.

Nov 14

Medicaid Matter for Kids Mondays -- Dacey

Every Monday Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we revisit Dacey, a Speak Now for Kids’ Family Advocacy Day alum and current patient at the The Children’s Hospital of San Antonio.


Dacey_Patrick.jpgWe first met Dacey nearly 18-months ago when she represented The Children's Hospital of San Antonio at the 2015 Speak Now for Kids Family Advocacy Day. Despite her medical challenges, Dacey is thriving. Her most recent surgery, which focused on her scoliosis, involved the insertion of a MAGEC (Magnetic Expansion Control) rod, allowing surgeons to straighten and correct the spine gradually and noninvasively through an external remote control system.

Nov 01

A Bedtime Routine Inspires a Way to Live

During the month of November, parents of children diagnosed with type-1 diabetes will share testimonials with the Speak Now for Kids community. You can learn more about this chronic condition, which is usually diagnosed in children and young adults, by visiting the American Diabetes Association.


Austin_Soccer.jpgAs a parent of any child, you learn that the key to getting your kiddos to bed on time is to develop a bedtime routine. With my daughter it was hot baths, a bedtime story and squeeze hugs. For Austin, it was a secret handshake between a son and his parents consisting of a hug, a kiss and a high five. As a parent, it’s hard to look back and see the missed symptoms leading to that day. At the time we thought we were in a normal battle with a 3 year who was refusing to eat food and only drink his calories. After about 4 days of constant requests for fluids and bed-wetting I told my husband I was taking him to the doctor. He asked what I suspected what was wrong and off the cuff I said “Austin either has a UTI or worst case scenario he was diabetic.” Throwing it out almost to say leave me and motherly instinct alone. Normal protocol for his symptoms included a urinalysis and strep test but I asked for them to test Austin’s blood sugar. Puzzled, but agreeable, the nurse grabbed a meter, pricked his finger, and gasped as the meter read HIGH. The reading HIGH was an indicator on the meter that Austin’s blood tested over its maximum reading of 600.

That day was March 9, 2016, and Austin was officially diagnosed with Type 1 diabetes.

Oct 31

Medicaid Matters for Kids Mondays -- Cailinn

cailinn_lynch_2015_brightened.jpgIn 2015, Kelly and Brian Lynch and their daughter Cailinn, 8, represented Children’s Hospital of Wisconsin in Washington, D.C., at meetings with federal lawmakers as part of Speak Now for Kids Family Advocacy Day.

Today, Cailinn is doing great. She is very excited to be back in school for second grade and enjoys the social interaction with the staff and her peers at Hales Corners Elementary. Cailinn spent this past summer diligently working in applied behavior analysis therapy to improve skills like feeding herself. It was hard work, but she was a rock star and continues to improve her self-feeding skills every day. As a result she was able to have her feeding tube removed, which she has had since she was 2 months old. For the first time since the day she was born, Cailinn is completely “accessory-free.” No more feeding tube, tracheostomy tube, oxygen or mediport. 

Oct 24

Medicaid Matters for Kids Mondays: Trevor

Trevor_Baseball_(3).jpgEvery Monday Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we revisit Trevor who represented Levine Children’s Hospital at the 2015 Speak Now for Kids' Family Advocacy Day.


Trevor is a typical high school sophomore. He loves all sports and plays baseball. He volunteers in his community, likes reading, video games and hanging out with his dog, Howie.

Oct 19

What's Up Wednesday -- Maggie

#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Maggie, a 12-year old patient at Mt. Washington Pediatric Hospital (MWPH) in Baltimore, MD. Maggie became a patient at MWPH last year after she suffered a concussion while playing soccer.

So, Maggie…what’s up?

Oct 12

What's Up Wednesday -- Shira

#WhatsUpWednesday is our chance to hear from teens who are involved with the Speak Now for Kids community. This week’s post focuses on Shira, a 17-year old with complex medical conditions who just happens to also be an award-winning activist and writer. A patient at University of Virginia Children’s Hospital, Shira founded Sick Chicks, an international community that works to empower and unite women with disabilities and illnesses.

So, Shira… what’s up?

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