Many of you have been following along on Instagram with Libby's health struggles over the past month and we really appreciate everyone's support and input. One of the true benefits of social media has been connecting with others who deal with health issues and the support they've all provided both Libby and me. With Libby's permission, I wanted to update everyone.
On December 5, 2015, Libby fainted in her bedroom. Since then, she's fainted 14 times. The first few times, she felt funny and had enough time to sit down before she lost consciousness. But the majority of the time, she's had no warning and simply collapses as she walks. I've found her unconscious on her bedroom floor, the kitchen floor, and the hallway floor. In the photo above, she's concealing a black eye with makeup and her hair. Aside from the black eye and a bruised wrist, she's been extremely lucky to have avoided injury, but it's been quite scary.
In the past month, we've seen three doctors, including her pediatrician, her neurologist, and a cardiologist. We will spend tomorrow afternoon at the hospital with the cardiologist for more testing, but we think we've come up with some answers.
It appears that she is dealing with a combination of anemia, dehydration, and POTS (Postural Orthostatic Tachycardia Syndrome). POTS is not as scary as the name suggests – it simply means that her heart rate rises abnormally when going from a resting position to a standing position or walking. Add in anemia, dehydration, and being very thin, and it's not exactly an ideal situation.
The good news is that the treatment for all of these is similar and fixing one issue helps the other issues. She's taking iron supplements, drinking a lot, trying to eat larger meals, and starting to use the treadmill. Increasing her blood volume is the best way to treat POTS so increasing her fluid intake and salt intake is key. They other component is strengthening her heart so that her heart will start pumping more blood with each heartbeat and her heart rate decreases. If necessary, she can also take medications that help but we're really, really hoping to avoid that.
Tomorrow's testing at the hospital involves a tilt table test which might be a bit uncomfortable for her but isn't terribly serious. While the test can confirm POTS, the cardiologist won't change his treatment advice so we're not expecting much else to change.
She's starting to feel a bit better and is going to school for an hour or two every day now. Our goal is for her to get through a full day by the end of this week. If anyone can do this, she can. She's still the bravest person I know. And I'm incredibly proud to be her mom.
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