About the cardiology appt for Princess… I was very down after the appointment. Friend, it was like King and I weren’t even in the room. Nothing we said mattered. The doc was engaging as far as looking at us, but he kept talking about Anderson Tawil Syndrome. I said several times that we have tested negative for ALL the known mutations, including the known ATS. I told him in several different ways that Princess’s heart rhythm is normal until her K+ drops and then becomes irregular. After we get her K+ up and her strength returns, the heart rhythm returns to normal. This is what two different RN’s have observed multiple times at school plus what we have observed at home. He totally discounted this and in fact at one point said, “You know, I’ve been doing this a long time…”
What I am learning is that to graduate from medical school as a specialist, you must be arrogant. You must put zero credence in what anyone tells you and believe only what you can observe yourself. This skepticism goes for school nurse as well as the parents. This has been ABUNDANTLY clear over the past decade during my quest for answers for my Periodic Paralysis. It's maddening to encounter it again on Princess's behalf. No matter what we said, he assured us that fainting during an episode was a result of having her hair fixed and the pain receptors being excited, thus causing her autonomic system to blah, blah, blah. Now, how in the world can he ASSURE us of this? Based on a 45 second EKG done in his office a year after the episode in question? It didn’t matter what we said, he came back with “Her EKG is completely normal and all people with ATS consistently have irregular EKGs. She’s fine, but we’ll have her wear a holter monitor for 24 hours just to confirm this.”
She’s not fine. I mean, she is, but her heart is doing something peculiar during episodes and I want to know what is going on. Period. There. I’ve vented. The Mama Bear is roused. Let the specialists take note.
Key words: cardiologist specialist Periodic Paralysis illness daughter
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I'm so sorry about your visit. It must be heart wrenching, especially with a child! My OB wouldn't listen tome about a lump when I was pregnant last time...it was cancer...I had to ask him 3 times about it, it over tripled in size.
My mom & dad finally fount a great Doctor and my mom found a great Cardiologist in Texas...took a lot of quacks first though. There are good ones out there though.
Keep us informed though. My prayers are with you!
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