My daughter who had a bunch of friends, enjoyed going out and doing things, and was a cheerleader, had a hard time getting out of bed and functioning some days. Lexi still got them, but instead of weekly, they were now maybe twice a month.
Having a debilitating headache for 2-3 days twice a month still stinks, but it's better than losing 3 days every week to headache pain.
After the 3rd time, I made an appointment for her with the pediatrician to make sure there wasn't anything serious wrong and it was just the exercise in the intense Florida heat that had caused the fainting.
The pediatrician sent us to a cardiologist to rule out any dangerous heart conditions that might have lead to the syncope.
She did another EKG and then the doctor had the nurse take a set of blood pressure and heart rate readings while Lexi was lying down, sitting up, and finally standing. Even though I knew it wasn't "all in her head," there was a little part of me that began to doubt. An answer that should not have taken years to obtain!
Her heart rate went from 80 to 144 when she stood up. This is why you shouldn't automatically take someone's word, even if that someone has a medical degree. If you feel that something is wrong, keep searching until you find someone who will listen and do what it takes to get an answer.
The last time, the technician informed her that her heart rate was 154. We met with him, went through her medical history once more.
"A young, fit girl like you shouldn't have a heart rate of 154. You really need to get that checked out."So we went back to the cardiologist we'd seen a couple years prior. He did a tilt table test (they monitored Lexi's heart rate and blood pressure and how it changed when she was maneuvered from lying down to an almost completely upright position.) Based on this one, noninvasive, simple test, he was able to give her a diagnosis - POTS (Postural Orthostatic Tachycardia Syndrome.)Finally, there's a definitive answer!
The doctor also theorized that this treatment could help decrease the frequency of Lexi's migraines.The neurologist admitted she didn't really know what that meant, and referred us to an endocrinologist.The endocrinologist basically looked at us like we were crazy for seeing her, and told us that an enlarged pineal gland didn't mean anything and they dealt with diabetes and actual problems, and we should just leave.Then one day, the summer before her junior year, Lexi and I were running errands.She saw a Big Red Bus and asked to stop so she could donate blood for the first time.It's pretty easy to get down when you deal with a chronic condition that makes you feel like garbage more often than not. Plus, she was able to utilize her artistic talent in an activity she could do while sitting or lying on her floor; one that didn't make her heart pound or her head spin.So we added a psychiatrist and some antidepressant medication to the mix. The neurologist Lexi was seeing for her migraines had come up with a concoction of meds that had significantly cut down on the frequency and duration of the headaches.It's heart-breaking seeing someone you love suffer especially when there's nothing you can do to help her. But it's not only the headaches that have plagued her.As a freshman in high school, she passed out during PE a few times.On one (of many) trips to the ER for medication to help stop a migraine that had lasted for 3 days with no relief from any of the prescriptions she had on hand, the doctor commented that Lexi was markedly anemic.He suggested taking an iron supplement and consulting with a hematologist right away. After considerable bloodwork, the hematologist diagnosed her with iron deficiency anemia likely due to her heavy and frequent periods, and referred her to a pediatric gynecologist.