I think I can speak for every single person that has battled an undiagnosed illness. There is a moment of hope when you meet a new doctor or go to a new hospital. You just know that this is the guy to help you. The one that will figure it all out and then sadly, as you listen to them speak, you realize that you were wrong. That they have no clue what’s wrong with you or they can’t look beyond their particular body part to get creative and figure it out. Suddenly, that moment of hope vanishes and you’re left with the realization that you’re not going to get any answers or any help. This was our reality for over two years.
At first we were optimistic. You can’t be spitting up blood for no reason, right? We had to hope but over time, I’d watch my teen smile and engage at the start of a doctor’s appointment and then shrink into herself towards the end when she discovered that there weren’t going to be any answers or a plan. After a couple of years, she’d leave an appointment pissed off declaring that it “was a total waste of time.” She was right. So, I made a decision to stop seeing specialists. If they just sit there and scratch their heads and have no ideas how to treat my child, then there was no reason to keep the appointment.
Finally, last fall, we got an answer. My teen was diagnosed with Ehlers-Danlos Syndrome forty-five minutes into an appointment with a new neurologist. It was a diagnosis that made sense to both of us. In fact, we had asked a Rheumatologist if it was a possibility eighteen months before and were told that it wasn’t. The cool thing about getting a diagnosis, is you know what the beast is. It has a name. The bad thing? No one here in Kansas City could help us come up with a treatment plan. So, our neurologist sent us to Cincinnati Children’s Hospital to try to get some answers.
Once again last week, I watched my teen go into an appointment in the upper airway center with a moment of hope. We were pretty certain based on the opinions of two ENT’s and a couple of sleep studies that she’d need surgery and we were both hoping it would fix her sleep issues. Unfortunately, the new sleep study showed that while she has sleep apnea, it’s not as severe as we thought after the first study. She isn’t a candidate for surgery. That’s when I saw the look on my child’s face. The moment of hope was gone and for the first time, I had to do something about it.
I spoke for my child and told him she was disappointed. I explained what that moment of hope was like for us and how many appointments we’d had with no answers and no help. While I knew that this one was a bit different because he was referring us to the EDS clinic and we would probably get some help there, my child’s hopes were dashed and we needed him to know. We left and Rosie announced, “this was a total waste of time.” I understood how she felt.
Two hours later, my cell rang. It was the doctor and he wanted us to know that he’d spent some more time looking at the sleep study and wanted to ensure us that we were leaving with a plan. I asked to put him on speaker so my teen could hear. He explained that Rosie’s main issue with sleep is periodic limb movement disorder and that’s interrupting her sleep. He doesn’t think it can be fixed by just treating her anemia, he thinks she needs to be on a medication. We’ll be seen in the EDS clinic and sleep psychology and all three clinics will work together to come up with a plan. If it doesn’t fix her sleep issues, he’ll consider operating to open her airway.
We hung up the phone and I saw her smile. The trip wasn’t a waste of time. There were actually people here that could not only help us, they want to. We’ll head back to Cincinnati the second week of September. We’re happy to hold on to this moment of hope a little longer.