Search Results for: boston

Using Google to Research Your Child’s Diagnosis
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Using Google to Research Your Child’s Diagnosis

Understanding and learning how to use Google to research a new diagnosis for yourself or your child is daunting, but it doesn’t have to be impossible! Diagnosis Anxiety During the first year of my daughter’s life, she received many diagnoses. Her body failed to thrive; she had severe reflux/GERD, projectile vomiting, aspiration, and Laryngomalacia. At…

Top Pediatric Doctors for EDS, Dysautonomia, and Mast Cell Disorders
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Top Pediatric Doctors for EDS, Dysautonomia, and Mast Cell Disorders

With my new series on Ehlers-Danlos and “The Trifecta” (Dysautonomia, POTS, Mast Cell Disorders), I have already been getting many questions about the pediatric doctors we see for these disorders. Since we are a military family, we have traveled to other states and seen other pediatric doctors that I would highly recommend. While most of…

An Introduction to Ehlers-Danlos Syndrome in Children
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An Introduction to Ehlers-Danlos Syndrome in Children

It’s been exactly one year since my daughter received three official diagnoses of Ehlers-Danlos Syndrome Type 3, Dysautonomia (POTS), and Mastocytosis/Mast Cell Activation Disorder. When you have all three of these together, they call it “The Trifecta.” Of course, you can have each one separately without the other, but more commonly you have at least two…

How to Keep Your Child’s Feeding Tube Formula Cold Overnight
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How to Keep Your Child’s Feeding Tube Formula Cold Overnight

One of life’s most important questions for a mom with a child on a feeding tube is how to keep the formula cold all night long while the child is sleeping. Some moms have to refill the bag several times a night. Some use an ice pack that may or may not work, but can…

Tips for Families Traveling With a Tube-Fed Child
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Tips for Families Traveling With a Tube-Fed Child

Most families like to travel. They want to see the world, visit family, and go on vacation. But what if you’re a special needs family? What if you have a tube-fed child? It may be more difficult to travel due to how expensive it is and because of all the medical equipment you would have to…

Being a Special Needs Mom Turned me Into a Stress Eater. Here’s How I’m Fixing it!
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Being a Special Needs Mom Turned me Into a Stress Eater. Here’s How I’m Fixing it!

Thank you, Jenny Craig for sponsoring this post and helping me be less of a stress eater. — Get serious about losing weight with Jenny Craig! Many of you know I am a special needs mom. What many of you do not know about is my struggle with my weight due to the stresses that come…

18 Coffee Brands That Give Back to Military Members
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18 Coffee Brands That Give Back to Military Members

I don’t know about you but I absolutely love coffee. I drink it almost every day and the right kind can give me that extra push I need to get through the day! As a military family, we are always looking for ways to give back and finding coffee brands that support and aid our troops…

12 Things You Need to Know When Your Child is in the Hospital
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12 Things You Need to Know When Your Child is in the Hospital

***I am not a lawyer. This is not legal advice.*** I have been wanting to write this post for a very long time. My daughter who is two years old has been inpatient at the hospital nine times and this doesn’t include ER visits! Many of these hospitals have been all over the country, including…

Letting Go of the Need for a Diagnosis
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Letting Go of the Need for a Diagnosis

I’ve been sitting on this post and update for awhile. I have been working through my thoughts and feelings in counseling and I wasn’t sure yet what I wanted to say to family and friends. In the past year and half our daughter Elizabeth has been hospitalized seven times, seen numerous doctors and specialists, had several surgeries,…