I was home for 3 hours today in between doctor appointments for my Tiger and I spent that time reading up on his diagnoses. As I drove him to 3 doctors in 2 days, thoughts swirled around and I decided to share some of it with you. This is not about RA, but there are some relevant concepts for those with any chronic illness or who are parents or care givers. I’ll leave out as many details as possible to shorten it as much as I can.
Once upon a time
When my older daughter Mary Khris was little, I suspected hearing loss and was dismissed repeatedly that she was fine after ear “cleanings.” At four, her loss progressed quickly and she finally saw an audiologist. When she was completely alone in a silent world before I could get her some loner hearing aids, I shed quite a few tears for her but, always after she was asleep.
She had excellent care and sophisticated testing by a pediatric ENT who I’ve written about before as being a saint. Really. Yet, no one could tell me why Khrissy could not hear. I made the best decisions I could for her. We did twice a week speech therapy when she forgot how to speak. I taught her to read and write and continued home speech therapy.
When Khrissy was 8, her baby brother Tiger got his first cold. And it was painfully obvious to me that he could definitely not hear.
The pediatrician (and everyone else) started the familiar run-around: “Don’t worry, Kelly. He’s fine.” But this time, I was unshakable. I was developing a mother-of-a-patient voice.
I went around the doctor to a pediatric audiologist who measured Tiger’s hearing loss and fitted him with powerful hearing aids.
(That’s a long story made very short, but you can read a bit more of our story on epatients.net.)
When Mary Khris was a teenager, I read that it was possible to get CT scans of the inner ears to possibly diagnose the cause of the hearing loss. My pediatrician (nicknamed so far as fantastic nurse practitioner – we need to do better, I’ll work on that) helped me get both of the kids scans and referrals to an academic center. (Translation: hassle.) But we were finally given a word for what we experienced: Mondini. I wrote about Mondini syndrome in a WEGO Health article if you’d like to know more.
That was the end of that road, I’d thought. Mondini causes deafness. End of story.
My incredible kids continued to excel and refused to let their disability be a barrier to accomplishments. They were blessed with a couple of women who were true guardian angels, helping ensure that hearing tests were done and constantly repairing hearing instruments: Ellen, when they were little, and Cynthia, the last few years. Cynthia does have a nick-name, but she doesn’t know it until now: Fairy godmother who magically makes things work. She really can do miracles.
Dr # 1: Yesterday
Yesterday, we’d been sent to an ENT to deal with impacted wax and do current testing. When the doctor heard Tiger wants to play football, he informed us that it’s not safe for anyone with Mondini syndrome to do contact sports. “One hit could decimate his ear and cause leakage of spinal fluid.”
What? What happened to the top academic pediatric ENT’s in 2 states telling us “It’s just deafness”?
Can I turn the clock back one day to “just deafness.” Like most people with RA would love to have “just arthritis.”
The doc told me to “Go online and find out whether the odds are 1 in 100 or 1 in 10” so we can decide whether it’s worth “rolling the dice.” He added, “Stay out of chat rooms.” At least he thinks patients should use the internet! When I couldn’t find any such odds today, I called his office to ask whether they could help with the search. I hope they can help us because he seemed to care what happens.
There are several similar issues with Mondini syndrome to those we find with Rheumatoid Arthritis: there is misinformation, outdated information, and debating about proper terms. For years, there was discussion about whether the condition occurs with a genetic link or is merely the fault of some event. Here’s one fascinating article: What is a ‘Mondini’ and What Difference Does a Name Make?
Dr # 2: Back pain
It was a re-run today. Cruel to a person with RA: a 7 a.m. alarm clock. But we got out the door and arrived on time. Then we waited 90 minutes to meet the orthopedist, but it seemed worth it. He listened carefully and answered questions. The answers on the other hand were not as pleasant.
Tiger was diagnosed with bilateral sacralized lumbar vertebrae (aka “batwing deformity” – yes, I realize how insensitive that sounds, but that’s what doctors call it). The L-5 vertebrae fuse to the sacral segments. His looks severe so now we know the cause of his sacroiliac joint pain, worsened by exercise and why he was unable to do certain exercises in the spring football training last month.
We will get tests, look at options, and try physical therapy, whatever it takes. And then our family will decide. Tiger has wanted to play football all his life. And while I was passing on my love for football, I’ve taught him to not give up, so he’s determined.
Dr # 3: Toenail surgery
Late this afternoon, Tiger saw the podiatrist for an infected toe caused by injury and an ingrown toenail. The straightforward solution was a familiar simple outpatient surgery. And hopefully an end to barefoot basketball in the driveway.
If you’ve heard my story, you know a decisive role was played by a certain podiatrist who was the first person who believed my joint symptoms were real. He helped me get to a rheumatologist and get treated. His compassion was even more meaningful while other doctors were dismissive due to my perpetually normal sed rate. [Yes, I took Tiger to the same guy.]
How can a mom know? I wish I’d been wrong when Mary Khris was a baby. I wish I’d been wrong when Tiger couldn’t hear either. I was certainly wrong when I believed that hearing loss was the only real “problem” with Mondini. Hearing is not the only problem with Mondini any more than pain is the only problem with RA.
We obviously have more questions than answers right now. Is football more dangerous for Tiger? Mary Khris and I want to know whether or not it’s safe for them to fly? It causes pain. What does that mean? How can we find out? What can be done?
Being an empowered patient or parent is a tough job some days. Searching for information. Reading conflicting answers. Finding trusted doctors. Making hard decisions.
[Edit 0833 am: Corrected typo. Added comment.]
- It’s Just Pain, Right? No, Dr. No, It’s Not
- How Much Does Patient Testimony Matter?
- The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis