Any parent of a special needs or medically complex child (or any adult with chronic or complex health issues, for that matter) knows the rarity and value of a doctor who is actually interested and 100% invested in doing right by their patients.

We’ve been lucky enough to find two doctors like this. Imagine this first scenario… walking in for an appointment and being face-to-face with a doctor like Dr. House. Pure genius. Brilliant. Loves a good challenge. You can see the wheels turning. He can zero in on the unexpected, and gives you a fantastic science lesson at every appointment as he explains this complex stuff as if you’re on the same playing field as him (and somehow you understand it all but never feel like he’s “dumbing it down”). A doctor that respects, listens to, and believes parents and patients. The kind of doctor you can tell must stay awake at night working through puzzling patients’ health issues. A doctor that is always crazily available to read and promptly answer messages in the patient portal (I try not to take advantage of this because he’s got to be unbelievably busy and I’m aware of how overbooked modern-day doctors are). But just swap out House’s saltiness for a fantastic bedside manner! And there you have the first really amazing doctor we ever had the blessing of getting an appointment with. He is neurodevelopmental neurologist to two of our kiddos. He started out in medical research and it shows. He is always questioning and looking for answers or ways to make improvements. He was behind developing an algorithm for the hospital’s Tourette’s Clinic, the only one like it in the country.

We had a follow-up with him yesterday morning for both Finnian and his older brother. For big bro, it involved just tweaking something because he’s already pretty much figured him out. Finn, on the other hand, he calls his “little puzzle”. We are still working on finding that magic medication that sets his brain on track from where it’s going off-course currently. He understands and explains to us why Finnian has the emotional outbursts and meltdowns he does. Why he’s always functioning at that level due to this neurological disorganization. His brain is wired differently, which is common among those with genetic differences, he explains to us. His emotional regulation is not developed at an age-appropriate level. Information comes in and he doesn’t know what to do with it, so he simply reacts like a toddler would. He acknowledges how exhausting this is not just for Finn, but for us as parents too. So, we discontinue the med that’s not doing it for Finn, and try a new one, with another as a backup plan if the new Plan A doesn’t work either. The trial and error process is exhausting in itself, but at this point in time it’s the best option.

I brought up the subject of Finnian’s poor sleep. His constant night waking, crying, and possibly not even being fully awake sometimes when he gets up and comes into our room, is preventing him from getting neuronally restorative sleep that his brain needs in order to function. I mentioned the study that was published on the PRKAB2 gene in December 2018. The doctor nodded and agreed (it wouldn’t surprise me if he already had read it) and theorized that his sleep issues could just be masking or presenting as attention/behavioral/ADHD issues. He’s hopeful that once we figure out his sleep, these other things might resolve (if you haven’t heard of the link between ADHD and sleep apnea, please Google it!). Finn’s sleep study is in March and we’ve got multiple doctors in his care now anticipating what it reveals. Until then, we have another new med to try. He also thinks his headaches recently are a side effect of the last med, so that’s a relief they’ll likely go away.

Subject number two that came up is our visit last week with the new biochemical geneticist that ordered the additional metabolic and genetic testing I discussed in a previous post (“Present Day”). He then tells us he is really happy Finn is in her care and satisfied that we’re going that direction. He fully trusts her thought process and knows that if she sees a reason to keep looking outside of his deletion that it’s the right decision for him. We then found out that he was actually the one who recruited her to the hospital for that position! He helped train and guide when she was a fellow. Even if we’d never met her (and she is our 2nd sweet find in the amazing doctor realm), that alone would sell us on putting our confidence in her.

Subject number three (tied back to his cognitive function, which is why we are seeing him) is the neurodevelopmental evaluation Finn finally has scheduled for early May that he referred him for back in September. We discussed, commiserated, and lamented how schools and their special education budgets work. He leaned back on his stool against the wall, getting more comfortable as the wheels turned in his brain, and told us that the testing the neuropsychologist will do will be far more detailed and comprehensive than *anything* (his emphasis) he’s ever had before. It will leave no doubts. And he knows Finn has already had *tons* of testing in the last few years.

Now an hour into this appointment, here’s where it gets even better. This is where we see this doctor and his care for all his patients shine through. He volunteered to actually drive all the way to where we live (which is not close!! It’s a 3-4.5 hr round trip depending on where he’s coming from!) to attend a school meeting and vouch for what Finn needs, to explain from a neurodevelopmental neurologist’s and neuropsychologist’s standpoint (because he knows what his and his colleague’s titles, education, knowledge and experience carry with them) how it all does affect his education, and help get this message across in a way that says they can’t deny him any longer. His next words just floor me when I replay it it my mind, “Because it’s the right. thing. to do. *for Finn*,” as he looks at my child playing with foam blocks on the floor (the blocks that had to be brought in to get Finn to stop having aggressive outbursts long enough for us to now sit in this relaxed way and talk.) And I know in that moment that he cares about what’s best for Finn as much as we do. He’s willing to go to bat for our kid! Imagine that love and dedication coming from a doctor! It’s a beautiful thing and sets our parent hearts and minds at ease just knowing someone like this is in his corner. I hope anyone else out there reading this who needs a doctor like him finds a doctor like him. It can be life changing. If you haven’t found your unicorn, keep looking. They do exist.