Sunday, June 10, 2018

Update On Lexi

A few people have asked me for an update on Lexi. (In March, I wrote about Lexi's issues with tachycardia. If you missed it, you can get caught up HERE.)

At that time she was going to be having a stress test with pulmonary function, and was going to be wearing a heart monitor for 30 days so the doctor could get a clearer picture of what was going on. The stress test was normal. The heart monitor she wore for 30 days, however recorded over 150 incidences where her heart rate went abnormally high. The electrophysiologist who originally talked about an ablation because he thought Lexi had an arrhythmia changed his mind and said she doesn't have an arrhythmia after all. He insisted her heart was fine and suggested her high heart rate was all in her head. 

"But I thought the monitor picked up a bunch of abnormal heartbeats," I asked, confused.

"Yes, but maybe it's anxiety causing it."

"Nope. She doesn't have anxiety."

"She should just exercise more. She's out of shape."

"Nope. She's thin, fit, healthy, and exercises regularly. She's been in sports her whole life. She doesn't get out of breath or have a hard time exercising. Her heart rate just goes ridiculously high."

"She just needs to drink more water and eat more salt. Her heart itself is fine. She probably just has an autonomic problem."

Okay then. We're done with the cardiologist, but still don't have answers.

A couple weeks ago, Lexi was skating when she developed chest pain and dizziness. Her fitbit showed her heart rate was 213. Half an hour after stopping, she was still crying because her chest hurt so much so I took her to the ER, scared that something bad was going on. 

In the end, she wasn't having a heart attack or anything. Her potassium was a little low so they gave her some. Then they instructed us to follow up with a cardiologist. Yeah, been there, done that.

About a week ago, she had an appointment with the neurologist she sees for her migraines. She pointed us to a cardiologist at Nemours who specializes in POTS (postural orthostatic tachycardia syndrome.)

We'll see. Not holding my breath.


Mona Hernandez said...

Sorry to hear that you got no answers! As a mom who has been thru this, I say get another opinion! A heart rate that high is not normal. My son was diagnosed with arrythmogenic right ventricular dysplasia. We were told to just "monitor" him and limit sports etc. He passed away in his room one night watching TV. Autopsy revealed a normal healthy heart, but the actual conduction was not normal. Perhaps if that had been diagnosed he would have a pacemaker and still be with us today. He was 15 at the time. We miss him terribly. I pray for your sweet girl and for you to get the right answers.

pednurse said...

Keep pushing to get the right answers for her. Go get a second opinion. I've taken care of some kiddos with similar issues & it took some doing by their parents to get the right treatment. One ended up getting the ablation done & has done very well with no more issues with tachycardia.

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