Yesterday felt completely pointless. Long story short, Nadia does not have autism.
Nadia and I stayed in a hotel Sunday night as we had to be in Iowa City super early Monday morning, and honestly, I just didn’t feel like dragging Nadia outta bed at 4am. So Sunday afternoon we drove there, checked into our hotel, stopped at the Coral Ridge Mall, then ate at Olive Garden before grabbing some snacks and heading back to the HIlton for the evening. Shockingly Nadia slept the entire night, even insisting she have her own bed! I, on the other hand, could not get to sleep, too much on my mind.
The day started with a long chat with a nurse, who had never heard of PANS or PANDAS. This should have been my first clue that the day would be pointless. I mean, maybe she is supposed to pretend she’s never heard of it, or she is really that clueless. Next they sent in the 4th year medical student. I can’t complain, that was Eric so many years ago. He was actually quite pleasant and spoke with a slightly more open mind than the nurse regarding Nadia’s symptoms and history. He’d at least heard of PANS although wasn’t all that familiar as to treatment or the University’s stand on it not existing.
Finally we met with the first actual provider, a developmental pediatrician. He was very kind, played a bit with Nadia, tried to calm her down, as she was already finished with being stuck in the same, very hot room, for over an hour. He listened quietly as I told our story, trying to remember every detail. When I told of our previous PANS diagnosis he was quiet, so I asked his opinion. He didn’t exactly look at me like I was crazy, as I had expected, but he certainly spoke to me in a way that made me feel somehow small. I don’t remember his exact words, but he explained how often we go down a rabbit hole and get sent off on a tangent that takes us nowhere. In other words, PANS isn’t recognized by him.
I also asked his specific feelings on mold, as more and more I feel like this is one of the main causes of Nadia’s PANS. I was actually quite shocked by his response. He flat out told me there is no research showing that mold is dangerous or that it causes the symptoms Nadia is experiencing. I wanted to argue, but why. I wanted to point out the countless peer-reviewed articles on PubMed, one of the most trusted sources of information for MDs. But again, why. He had his mind made up.
Next we moved onto a speech pathologist who again played with Nadia while making a lot of notes. She was very young, very nice. I didn’t even both sharing any more of our history with her than she specifically asked for…
Our last appointment was suppose to be with an audiologist for a hearing test, but Nadia had her hearing checked in August at her four-year well-child exam, so we decided to skip that and instead we were send to a conference room. The developmental pediatrician and medical student joined us with the results. Nadia doesn’t have autism. I wasn’t concerned she did, but I guess good to rule it out and have it clearly stated in her chart. Their suggestion… referral to child psychology. This annoyed me. Not because I’m against medications for anxiety and depression for those who need them, but more so because I see this as a band aid for Nadia’s symptoms. It might work, may make her act ‘normal’, but it will not solve the real issue or find the root cause.
I guess overall I’m really, really sad and frustrated. The University is the place I look to, a place that I view as the most advanced, most up to date on information and treatments, basically where you go when all else fails and you want answers. Clearly I was wrong. The University is not up to date on the latest research on PANS and PANDAS, nor do they even seem willing to explore, join in on the conferences, view the research currently being conducted. The University failed me, and so many other struggling parents and children. And that sucks.
This morning we had a follow-up with Nadia’s PANS specialist. We’re going to switch to a different antibiotic and make an appointment with an allergist to see if that is possibly the cause of the current flare. The doctor also mentioned an IVIG medical trial that we might be able to join. Which scares me, but also encourages me. There is still hope, we are not out of ideas to cure Nadia.
