Welcome to Families First, the Child Neurology Foundation (CNF) e-newsletter for parents and caregivers. CNF's mission is to help children living with neurologic conditions reach their full potential. We work to achieve this daily by creating connections between patients and their families, physicians, other healthcare professionals, and industry and advocacy partners to improve quality of care and quality of life. 
MY LIFE AFTER A STROKE
By Michelle Ballasiotes



Sometimes I wonder where I would be today if my stroke had never happened. I'm sure a lot of other people feel that way about some life-changing event in their lives. I know some parents who have this same question about their child who suffered a stroke, but no one can go back in time. It happened and I have chosen to live my life to the fullest and focus on the positive. I try to use the philosophy of John Wooden, by realizing that, "Things turn out best for those that make the most out of the way things turned out."

Because of my stroke, I will never have full use of my right arm/hand and my right leg/foot. I had to wear an ankle foot orthotic (AFO/plastic leg brace) on my right leg for many years.  I remember lots of people asking me what that plastic thing on my leg was. When I was really young, my mom would explain it to people, "It is just something that helps her walk better, like glasses help you see better." 

Everyone that knew me just got used to it being a part of who I was. Then I moved to Georgia from Illinois the summer before 5th grade. I chose not to tell anyone that I had had a stroke and why I wore an AFO. That was a big mistake. My classmates imagined all sorts of things about what I had on my leg. The kids bombarded me with questions and stares. I usually answered the questions with the robotic response, "It helps me walk better." Sometimes I would see confusion on their faces and I'd go into more detail. On bad days, I told people I broke my leg to save myself having to answer more questions. My advice to parents and kids that are old enough to answer questions for themselves is to be up front and honest right from the beginning. I found that when people were left to come up with their own answers, they imagined all sorts of strange things.

I sometimes avoided telling people that I suffered a stroke because I was worried that people would treat me differently and give me too much pity. While that may have been true at first, it only took a little time to show people I am just like everyone else. I realized that those few people who still would not be my true friend after they got to know me were not worth it. I wasn't going to surround myself with people who made me feel bad. I had trouble accepting it at first, but then I realized that not everyone will want to be my friend and it's time to find people who will accept me for who I am.

Despite some rough times, I have tried to make the most of what I am able to do. I remember taking ballet classes and not worrying that I wouldn't look the same as the other kids in some positions.  Next I tried softball and my dad came up with the idea of putting a wire through my mitt to help it stay in a catch position since my right hand wasn't strong enough to keep it open. After softball came soccer. It was a blast and the kids on the team didn't see me as having a disability even though I ran slower and couldn't control the ball with my right foot very well.
My favorite sport of all is swimming! It was hard to find a swim program for kids with disabilities or a non-competitive swim team here in Charlotte, NC, but I finally found a perfect local swim program for me. In elementary school, I enjoyed Girl Scouts, and having my mom as the troop leader made it easier for me to fit in.  For band in 4th grade, I found the baritone, which is an instrument I can play with my left hand (if it is the kind with the keys on top)! As a rising senior, I am still in band and even though marching band is a lot of work, it is also a lot of fun!

A s my 16th birthday approached, I was determined to do whatever it would take to be able to drive safely. I found it easier and safer to drive with a steering knob, although I only need to use it on turns because that's when my right hand tends to fist up and not help turn the wheel. Luckily, I have enough strength and flexibility in my right foot so I don't need any foot pedal accommodations. Although it did take more time for my right foot to get used to the gas pedal since it is weaker and wasn't used to having to use such controlled motions. I'm happy to say I got my license and it is such a good feeling to be so independent!

Through my mom's advocacy work, I have had many opportunities to share information about my stroke. I have given speeches at hospitals, schools, a congressional briefing, and American Heart Association events. I've had a few newspapers and magazines do stories about my life, but the most fun I've had was being a guest DJ on the radio! I am thankful for the wonderful people I've met and the experiences I've had. I love the feeling of being able to inspire others and give them hope! I want to be able to continue this for many more years.

My biggest piece of advice to parents of stroke survivors is not to hold your children back! Let them explore many things and motivate them to keep trying. The difficult part is realizing when you are pushing your child too far. Sometimes I felt that my parents were making me do things that I really wasn't ready to do. I do regret still being afraid to ice skate, ride a horse, and ride a bike. I don't know if it would have been easier if I had started younger, but I suggest trying to get your child to try new things as early as possible. Also, start stretching your child at an early age so it seems routine before they get old enough to protest. I find it really difficult to do stretching every day because I never got into the routine.I sometimes loved going to OT and PT, but other times I just wanted to be a regular kid and go outside to play. My favorite "therapy" has been yoga and swimming because it was fun exercise and it didn't seem like "work". If your child is resistant to doing stretches at home or going to OT and PT all the time, I suggest searching for something like a yoga, karate, or swim class that will make accommodations for your child when needed.

I don't let my stroke hold me back; I only let it push me forward. If I want to do something, I will find a way to get it done. I can do most things that other typical kids can do, but I just have my own unique way of doing it. I don't want to hide from my stroke. I want to embrace it as the positive thing that made me who I am today. I believe in accepting what happened and making my life better because of it!
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Stroke in Children
(Pediatric Stroke)

Stroke is brain damage that occurs secondary to the blockage or breakage of blood vessels in the brain. The causes of stroke in children are many and often not well understood. Diagnosis requires careful clinical examination combined with brain imaging. Early treatment focuses on protecting the brain and keeping blood vessels open to prevent more strokes. Most children experience neurologic deficits with long-term treatments focused on physical, developmental, and psychosocial complications. The study of pediatric stroke has been growing rapidly, from understanding the main causes to supporting children and families.

SYMPTOMS AND PHYSICAL SIGNS
Most strokes in children present with the SUDDEN ONSET of neurologic problems.  The sudden onset of neurologic symptoms should be considered stroke until proven otherwise, regardless of age. These are often focal neurological deficits - affecting one specific function. Common examples include:
  • Weakness of one side of the body (hemiparesis) - This is the most common presentation and may affect any combination of the face, arm, and leg.
  • Difficulty speaking - This includes problems generating speech (expressive dysphasia), understanding speech (receptive dysphasia), or decreased clarity of speech (dysarthria)
  • Vision abnormalities - Includes loss of vision on one side (hemianopsia) or in one eye (amaurosis) and double vision (diplopia)
  • Dizziness, trouble with balance or walking - unsteadiness, lack of coordination (ataxia), and abnormal sensations of movement (vertigo)
  • Numbness or altered sensation on one side of the body
Less specific neurologic symptoms can also be the first manifestation  of stroke, particularly in young children. Examples include:
  • Headache - Headaches are common in children but the sudden, instantaneous onset of a severe headache (called "thunderclap" headache) is worrisome for hemorrhagic stroke
  • Seizures - Most seizures in children are due to something else, but seizures often occur in children at the beginning of a stroke.
  • Altered Mental status - Confusion, behavioral, or personality changes
  • Sleepiness, decreased level of consciousness - This is more common in hemorrhagic strokes and a worrisome, life-threatening sign.
Signs and symptoms can also occur briefly and resolve. This happening is called a transient ischemic attack (TIA). Such symptoms should be taken seriously as they may be a warning sign of a possible larger stroke.  Failure to recognize the signs and symptoms of stroke in children often contributes to delays in diagnosis.

Click here  for the full pediatric stroke article written for caregivers by child neurologist, Dr. Adam Kirton.

Strokes Can Happen at Any Age Video Series
Dr. Rebecca Ichord: Raising Awareness for Pediatric Stroke

An Overview of Pediatric Stroke: 
Prenatal through Teenager
An Educational Guide for Healthcare Providers 

Pediatric Stroke: 
The Who, What, When, and Beyond
A Patient and Family Guide

Brendon's Smile Foundation Lecture Series

The Brendon's Smile Foundation has partnered with the Washington University School of Medicine, Department of Pediatric Neurology in St. Louis, Missouri to educate doctors and medical professionals through the Annual Brendon's Smile Foundation Lectureship Series on Pediatric Stroke, presented by leading experts in the field of pediatric stroke. While these lectures are intended for healthcare professionals, the information discussed is of great value to anyone interested in learning more about pediatric stroke.
In early 2014, one of the lectures was made available for Continuing Medical Education Credits. The 2013 lecture by Dr. Adam Kirton titled, "Perinatal Stroke: Black Boxes and Brighter Directions" can be accessed for CME credit by registering at the Washington University School of Medicine  CME-online site. Once on the website click on "Course Catalog", then to "CME Credit Courses", and then to "Pediatrics" to access the lecture.


A Stroke Can Happen at Any Age Video Series


The International Alliance for Pediatric Stroke invites you to share your personal story of how stroke has impacted your family. Sharing builds hope and unites communities across the globe for change! 

Click hereto fill out the short registration form and add your own marker to the map. 
Annual World Pediatric Stroke Awareness Week 
Mark your calendars and look for more information this spring!

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