“Mama, I feel dizzy…”
I can’t tell you how many times I’ve heard that the past few months and I have to be honest- I just blew it off. Want to know why? My teenager’s been spitting up blood for thirteen weeks and three days . Would that make her dizzy? Probably. Especially at dance when she’s trying to push herself to be able to compete with her team- that’s where I heard her say it the most and to me it sounded pretty innocuous. She’s been sick. She’s out of shape. Of course, she’s dizzy.
But then a couple of weeks ago, I caught her checking her blood pressure. She said it was high. Once again, I blew it off. She’s pretty small and if the cuff didn’t wind up in the right position on her arm, it’s going not going to be accurate. Did I think it odd that she took the initiative to check it? Nope. She’s obsessed with all things medical so I thought no big deal. Looking back now I know that it was. Here’s why.
We just made the trek to Mayo to try and figure out why Rosie’s been spitting up blood. While that was unsuccessful (you can read why here), the trip was not a waste. We got the chance to have a doctor look at all of Rosie’s symptoms objectively and make a diagnosis. Something that hadn’t happened here in Kansas City.
No one ever looked at Rosie holistically. When she saw physicians, each one looked at their specific specialty- the neurologist looked at the migraines. The GI doctor worried about the angioectasis in her small intestines. The dermatologist fretted about the Pleva. And everyone was trying to figure out the source of the blood but no one thought it was their body part (they were right). Believe it or not, all of the things that Rosie has wrong with her are not related. We do know that they may have been triggered around the same time by a virus or infection, but that’s where the commonality stops.
This was pointed out to us immediately when we saw the pediatrician that would guide our care during our week at Mayo. A half hour into our discussion, she pulled out a piece of paper and drew a Venn Diagram. She explained that each circle was a symptom-something that made Rosie feel bad and the middle? There may be some overlap. I left the room so Rosie could speak freely with the doctor.
For the past three years, my teenager has suffered from debilitating migraines. The past two years, her anxiety has spiraled out of control with the pressure of staying in school. She’s also been sick. Two years in a row she’s had a really hard time rebounding from an infection. This year, she contracted Mycoplasma. Then Pleva and then of course, there’s the spitting up blood thing. But, when you look at all her symptoms- most of them look like they could be caused by her migraines- stomach pain, nausea, fatigue are all common for migraneurs. But the combination of symptoms is not.
Fifteen minutes. That’s all it took for the doctor to figure out what’s wrong with Rosie. Looking objectively at all the symptoms she was able to put this illness in a neat little box- Rosie suffers from autonomic dysfunction. What does that mean? Her nervous system does not send the automatic signals to her blood vessels telling them to tighten or relax affecting blood flow to her body. It was confirmed the next day with a tilt table test (which my child will tell you is a little slice of hell) that Rosie has POTS (Postural orthostatic tachycardia syndrome).
Only 1% of all teenagers have POTS. It’s not common so I completely understand why we were never diagnosed here in Kansas City. I do have to give a shout out though to our Physical Therapist, Noelle, who mentioned it to us a month ago (since we were so focused on the spitting up blood, I took a quick peek online and dismissed it right away). Why did they find it at Mayo? They’ve done a great deal of research over the past 15 years and have trained their staff to look for the condition. If you’d like to learn more about POTS, here’s a video.
Rosie was not shocked by the diagnosis and was actually happy to put a name to all these crazy symptoms. We think she’s had POTS since our cancer scare in 2013. She had a hard time coming back from the upper respiratory virus and was tested multiple times for mono. The extreme fatigue, increase in daily headaches and stomach aches and migraines all started around that time period. So, she’s probably been living with this for a year and a half. To be honest- that’s good news because she’s extraordinarily high functioning for someone that has such an extreme case.
Over the next few weeks, I’ll spend some time blogging about this part of our journey (there’s far too much to say to put in one blog). It’s our hope that we’ll be able to do the same thing we have with our migraine blogs- help another family that has a chronically ill child and doesn’t know where to turn. We hope that one day a teen that tells their Mama, “I’m dizzy” will read our story and ask the right questions so they can get a diagnosis.