We were at Vestibular Therapy yesterday going over the happenings of the past couple weeks when I looked at Andrea and said, “It’s like we’re finally peeling back the layers of the onion.”
She smiled real big as she knew exactly what I meant. We weren’t really getting new answers but we were finally ruling out some more things and hopefully getting closer to some truth. That’s refreshing.
If you haven’t been hanging out with us the past couple of years, there’s a lot that you’ve missed. My teenager has chronic migraines that got worse in middle school. She also had a cancer scare that wound up to be a hip injury that almost ended her dance career. The following year, the migraines got so bad, we pulled her out of school to get them under control and just when she was getting ready to head back to 8th grade, she started spitting up blood. That’s the easy part of the story.
The hard part? The past year. We went to Mayo after being poked and prodded here in Kansas City for 2 1/2 months where they said in all seriousness, “Sometimes we see kids spitting up blood and we just can’t figure out why.” There my daughter was diagnosed with POTS. We finally got her feeling well and ready for high school when the medication she was taking gave her stroke-high blood pressure that caused her to pass out resulting in a concussion. Once she was on the mend and back at school, she had a lumbar puncture, leaked spinal fluid for 11 days and now has bilaterally dilated eyes and blurry vision. Oh, and I forgot to mention that our neurologist won’t see her because she thinks it’s just pain because Rosie was diagnosed with Amplified Pain Syndrome in December (which we don’t think she has). If you’re tired reading that then you must imagine how tired we are living it. It’s been a long couple of years but hopefully, we’re finally going to get a break.
Peeling back the layers of the onion
Yes, I know it’s a bad metaphor, but it’s exactly what’s happening right now. Instead of looking at Rosie’s chronic illnesses as a whole, we’re now getting in front of specialists that are looking at little pieces of the problem. It’s time consuming but it’s not as frustrating as getting a blanket diagnosis like Amplified Pain and accepting the words, “it’s just pain.”
Last month, we went to a Neuro ENT to try and figure out the cause of Rosie’s dizziness (which can be caused by both POTS and Vestibular issues) and to start to figure out why her vision’s blurry (not his specialty but we knew he’d refer us). He ordered a MRI and an evaluation with an Audiologist. The Audiologist appointment was fascinating. Essentially, all of the tests to uncover ear problems are actually diagnosed through eye movement. Check out those dilated pupils!
While we didn’t get any concrete answers in our follow up appointment with the Neuro ENT last week, we did get things ruled out. The problem is not Rosie’s ears. While we hate not getting answers, this was a good one. If it was her ears, there would be permanent damage. We now know that the problem is definitely neurological and we’re patiently (or not so patiently) waiting for our appointment with the Neuro Opthalmologist in June.
Other good news? While Rosie doesn’t feel well, she’s doing better. When we met with the Cardiologist last week, we were honest. We’re not sure what’s working. It could be the Beta Blocker, Botox or Riboflavin. Or, it could be the fact that we’re finally getting over the concussion. Who knows and who cares. Seeing my child out of bed and having normal teenage days, even though she’s exhausted after, has been reassuring. I’m just keeping my fingers crossed that we don’t have another setback since every time we get going in the right direction, it happens. Prayers people.
The best news of all? Rosie got an academic award and her high school letters. While she doesn’t think it’s a big deal, it is. She only made it to a dozen days of high school. She’s been taking her classes on the couch and in homebound services without the benefit of classroom education. And, she’s done it with blurry vision to boot. She’s living proof that you can do anything you put your mind to. She makes me burst with pride.
My daughter has always said that she doesn’t want to be defined by illness. I’m happy to say that I don’t think she ever will be. I think she’ll be defined by her fighting spirit, endless determination and her gorgeous smile. I hope she can inspire others.