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In Part 1 and Part 2 of Adventures in Tube Feeding: G-Tubes & Autism, I shared my family’s recent medical emergency. My 9-year-old son, Will, who has severe autism and is nonverbal, went on a hunger strike, and as a result, ended up in the hospital for nearly two weeks, ultimately getting a feeding tube called a microvasive G-Tube. Now, while he is undergoing extensive feeding aversion therapy, Will can get all the nutrients he needs through what is essentially an access port to his stomach.
Recently, I shared the news that my nine-year-old son just spent 11 days in the hospital due to severe feeding aversion issues that resulted in life-threateningly low potassium levels. So, what is a feeding aversion?
If you’ve followed the Lauren’s Hope blog for a while, you know that sometimes I write about my kids and their medical needs. Julia, 7, wears her Lauren’s Hope medical ID bracelet for her chocolate allergy and for the simple fact that I know she would completely freak out and forget our phone number in an emergency. Will, 9, wears his Lauren’s Hope medical ID bracelet because he has severe autism and is nonverbal. He’s had the same one for quite a while now, but last week, I had to order Will a new medical ID tag. The reason? Will just spent 11 days in the hospital and got a G-Tube.
May 15-June 15 is Tourette Syndrome Awareness Month. It’s estimated that three to six out of every 1,000 children has Tourette Syndrome. Tourette Syndrome is an inherited syndrome, so if one parent has a dominant Tourette Syndrome gene, there is a 50% chance the child will develop Tourette Syndrome. Males are three times more likely to develop, and 75% of children with Tourette Syndrome develop tics before the age of 11.
June is Post-Traumatic Stress Disorder Awareness Month. Although PTSD has been brought to the nation’s attention by the staggering number of war veterans who return home with it, Post-Traumatic Stress Disorder doesn’t just occur in veterans. An estimated 7.7 million Americans have PTSD. One in 10 women will develop PTSD in her lifetime, and 50% of those with Post-Traumatic Stress Disorder don’t seek treatment.
Huntington’s Disease is a hereditary brain disorder that affects people of every race, all over the world. In the United States, Huntington’s Disease occurs in about one in 10,000 people, and currently, about 30,000 people in the U.S. have Huntington’s Disease. Up to 200,000 people in the U.S. are at risk of developing Huntington’s Disease in their lifetime.
When it comes to Summer, aside from the warm weather and pretty flowers, my favorite part is cooking out with friends and family. Since I was diagnosed with Celiac Disease, however, I look at barbecues a bit differently. Instead of seeing a delicious spread of potato salad, coleslaw, and chips, I see unknown cooking surfaces, mystery seasonings, and cross-contamination risks.
Monday is Memorial Day. While that typically means a day off work, lots of picnics, and the unofficial start to summer, we all know the true purpose of Memorial Day is honoring those US military personnel who have died in service to our nation. So today's Free Stuff Friday is a little different. Today, we're not giving away Lauren's Hope medical ID bracelets. Today, we're giving away three pieces from our new Love & Beloved line of personalized jewelry.
Traumatic Brain Injuries affect 1.7 million people annually. A Traumatic Brain Injury (TBI) is a form of acquired brain injury that occurs when a sudden trauma causes damage to the brain. A TBI can happen when the head suddenly and violently hits an object, or when an object pierces the skull and then enters the brain. Concussions are the most common form of Traumatic Brain Injury.
Whether you're cheering or groaning over the end of the school year, it's here, and for parents of children with chronic health conditions or special needs (as, let's face it, with everything else for us), there's extra work to do. As the mom of a third grader with severe, nonverbal autism and the mom of a first grader with a chocolate allergy, I'm not just wrapping up the year and looking forward to summer vacation. I'm doing year-end IEP meetings and coordinating with summer camp personnel to make appropriate arrangements for their care all summer long. Don't get me wrong. We have a healthy dose of FUN planned for the summer, but making that happen ... well, it just takes a bit more planning when you're a special-needs parent.
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