Update – More Testing Needed

July 26, 2016 By Ashley Bergris in Noonan Syndrome-Like Disorder, Our Family's Journey, Uncategorized Tags: bleeding disorder, clotting factor, hematology, medical Leave a comment

We went to the hematologist yesterday. They need to run more testing. According to the tests ran two weeks ago, our son does clot moderately slower than expected. They’re not sure why and the additional tests will hopefully provide some insight. Depending on the cause it may be easy to manage. I didn’t ask questions about what we’d need to do if it wasn’t easy. I don’t want to know unless I need to know.

It’s been tough for me because I wanted to believe I was wrong. I wanted with all my heart to believe I was paranoid and I had been nagging nurses to hold the gauze a little longer and check before they put the bandaid on after removing an IV for no reason. I wasn’t wrong. I’ve known for a long time he had this issue and while I chided the nurses to be cautious, I still denied to myself that there was a real problem.

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Crazy Week – A Rough Fall

July 13, 2016 By Ashley Bergris in Noonan Syndrome-Like Disorder, Our Family's Journey Tags: bleeding, bruising, Emergency, fall, hematology, medical, noonans syndrome Leave a comment

Not sure how many people know this. I certainly had no idea before this past week. Noonan’s Syndrome carries a decently high probability of having a bleeding disorder of some kind or another. Having a bleeding disorder can mean a lot of different things. Sometimes the bleeding is slow to stop. Sometimes the wound re-opens easily for multiple different reasons. I didn’t know any of this until our son took a spill face first onto the hardwood floor from standing height. He falls a lot but this one was different. A blood vessel in his head burst on contact.

Instantly he had a golf ball sized lump on his head. I wasn’t sure how serious that was so I was dialing the pediatrician when it gradually doubled in size before my eyes. Suddenly, I didn’t feel so comfortable waiting on hold. I called our emergency number and waited for the medics to arrive. When they came in the lump was about 90% of the size it would eventually become. They advised I take him in as a precaution so we grabbed my purse, both of our shoes, and loaded him into the ambulance.

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Conquering Medical Terminology

September 11, 2015 By Ashley Bergris in Caregiver Tips & Tricks Tags: cardiology, gastroenterology, hematology, medical terminology, neurology, ophthamology, pediatric, resources 2 Comments

It’s sometimes difficult to understand what your primary care doctor is trying to tell you, but they’re used to explaining. Some can tell by the look on your face you don’t get it, and immediately just give you a five second rundown of what the term they just used means. Even better, many primary physicians don’t hardly use medical terminology at all.

Your child’s pediatrician is similar, but what happens when you have more than just a pediatrician? Medical terminology is a massive hurdle to overcome. If you’re working with a specialist you’ve never seen before it’s especially overwhelming. First, here’s a list of things you can do to ease the pain when talking to a new specialist, or a familiar specialist about an unfamiliar problem.

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