Grace and I finally met with our third neurologist. Her psychiatrist insisted that we get a second, or really third, opinion. We have waited for this appointment for months! We went to one of the premier specialty centers in our region. One can’t just make an appointment. I had to speak to a gatekeeper. The gatekeeper sent me to a nurse. The nurse questioned me. The nurse then sent me to the neurologist’s nurse who questioned me who then spoke to the neurologist. The neurologist then agreed to see Grace. I was so relieved. This is a facility that is known to treat “zebras”. It’s a funny term, but it means that if all people are horses there are bound to be a few zebras in the mix. Grace is a zebra at this point.
Dr. Fabulous spent two hours with us. I have never seen such a thorough neurological examination. She did not act like a neurologist either. She was, well, normal and kind! Not at all clinical. She seemed to like humans! Such a refreshing experience. I will spare you all the details, but there is a plan and an idea percolating in the good doctor’s head.
Does Grace have a clear-cut case of childhood-onset schizophrenia aka schizoaffective disorder-bipolar type? Maybe not. I know, I know. I’m nervous. Because Grace is having such debilitating migraines–oh yeah, we got a firm diagnosis on that, y’all–there might be more to her presentation than anyone has considered! Can someone please give me the Fist Bump of Victory on that? I have not been overmedicating my child. Dr. Fabulous said that she is clearly having migraines–Transformed Migraines to be clear. So, she’s increased her Neurontin to 900 mg as a preventative measure, and we need to bring in a pharmacologist to talk about abortives. She wants to use a triptan, but triptans deal with serotonin. Grace is already on so many drugs that deal with serotonin. She doesn’t want her to get Serotonin Syndrome. So, the jury is still out on how to abort these migraines, but, heck, we’ve got a diagnosis. That’s something.
Remember my post on Ehlers-Danlos Syndrome? Then, the possibility of seizures due to these “events” she’s been having around flashing lights? Then, Grace’s GI issues with gluten? Then, of course, there’s the Restless Leg Syndrome and the intermittent muscle cramping and her strabismus. When Dr. Fabulous put it all together she said, “I have a lot to consider, but I’m leaning towards some kind of mitochondrial disease.” Combine that with her neuropsychiatric issues and the cognitive decline, and it starts to make sense. It’s not a bunch of health problems in one little body. It’s one underlying problem causing a lot of “symptoms”, if you will, the psychiatric issues included.
I feel stunned. A mitochondrial disease. So, Grace is being admitted to the hospital for three days for a VEEG and further testing in mid-October.
I don’t know about you, but I feel like I’m on a roller coaster! But, wouldn’t it be nice to have an answer? A real answer?!