Jonathan and I bit our tongue, scheduled an appointment with the new neurologist, and hoped for the best. Our hope was that the neurologist would be scared away by Allie's diagnosis and bump us back to our original neurologist.
Our appointment started off a little rough. The neurologist had dislocated her left shoulder the week before and had her arm in a sling. The very first thing she said to us was directed toward Allie: "Look! You have right hemiparesis and I have left hemiparesis!" Hmmm.... it did seem like a great start to compare cerebral palsy with a dislocated shoulder, but we let that one slide.
She then spent the next hour examining Allie and making sure that she understood Allie's story. Toward the end of the exam, it became very clear that the new neurologist was not going to give us the referral to see our original neurologist. I asked if she had worked with hemi-kids before and we were surprised at her response: she has worked with over 200 cerebral palsy kids during the past 21 years, treated thousands of kids with epilepsy, and ran a pediatric movement disorder clinic. Better than we had expected.
She had some new observations. She seemed to think that we should consider Botox for Allie's right hand, so we will talk to Allie's physiatrist about it at our next appointment. The neurologist also said that the Benik splint should absolutely be covered by our insurance and will be noting that in Allie's medical record. And, she wants Allie to get mitochondrial blood tests done to look for a cause of Allie's stroke. I have heard about mitochondrial issues with hemi-kids, but I had assumed that the MRI scans looked different. The other neurologists that we have seen have said that Allie's scan looks like a classic left middle cerebral artery (MCA) infarct (oxygen cut off by a blood clot). I have no idea if this can be related to a mitochondrial issue, but it doesn't hurt to get tested.
After our hour long exam, the neurologist took the CDs of Allie's two MRIs to look through in her office. A half hour later, the doctor came back and simply said "that was a very impressive stroke." Impressive? I was so confused by the adjective that I asked what she meant. She explained that the damage was more extensive than she would have guessed, given how great Allie is doing. She said that she was particularly impressed with Allie's talking given the stroke location. I guess that this was intended to be a positive comment that Allie is doing well, it just could have been phrased better.
So, the new neurologist is recommending that we get one more appointment with our original neurologist covered to smooth the transition but otherwise we will be seeing her. Jonathan and I are trying to stay positive about this. We figure that we have a few options.
- See just the new neurologist. Maybe she will be great (or at least fine).
- Pay for the appointments with our original neurologist out of pocket and use them to supplement our appointments with our new neurologist.
- Change to my company's PPO insurance option so we can see whomever we want, but we would end up paying significantly more every month and have higher co-pays. We also really like that our current insurance covers all the PT and OT programs that we have wanted to do so far. Maybe the PPO would too, but there is some level of uncertainty in the unknown.