On Thursday we found ourselves back at the neurologist. I used to dread doctor’s appointments–every time I went there was some new thing that was WRONG and BAD and NEEDED TO BE FIXED RIGHT THIS SECOND. Ugh. It was like a report card with all F’s. Things are more stable now–appointments don’t tend to end in a surgery recommendation or a life-altering diagnosis-but I still look forward to them with the same level of excitement as someone about to get a mammogram.
This was, hands down, the best visit we’ve ever had at the neurologist’s office.
I told her all about the school nurse’s concerns about possible sleep seizures. Doc thought it was unlikely.
I told her about concerns the nurse had a bout his shaking eyes. Doc doesn’t think it’s a seizure.
I told her the nurse thought we might need a 24 hr eeg. Doc disagrees.
I asked her about when Charlie giggles in his sleep, could that be a seizure? She thought not.
She acknowledged that there’s always the possibility that Charlie has the occasional seizure that we don’t pick up on, but as long as he continues to progress and develop like he is, she thinks we should continue to do what we’re doing. It was the most laid back I’ve ever seen her with regards to Charlie. I even had to remind her that we needed an EEG.
She marveled at his vision. Marveled. This was a woman who wasn’t convinced he could see at all.
She assured me that Charlie’s issues with over-heating are definitely related to brain injury. She said it’s extremely common and assured me that I was not being overly-crazy.
Speaking of crazy, I know I’ve told y’all about how Charlie’s vaccinations are all messed up and how we are now proceeding very slowly with getting him vaccinated against some of the biggies. Next on my list was the DTaP, but several of my amazing readers told me that the D part is contra-indicated for some cases of Epilepsy, so I held off until I could talk to her about it. You know what she said? She said, “I’d risk as little as possible–you need the tetanus.” If you’ve ever tried to talk to your doctor about alternatives, you know how rare and wonderful that response is. She actually recognizes the work and effort we’ve put in and how far we’ve come with Charlie. She wants to protect what we’ve accomplished. I’m like verklempt over here or something.
Now I just have to find someone who offers a plain tetanus shot to three-year-olds. I called our regular pediatrician’s office and her nurse called me back to tell me, “uhhhh, we don’t offer that. Dr. So and So (not our doc–just some other doc in the office) says it should be fine as long as the epilepsy is controlled.” Ummmm, forgive me if I don’t give a flip what some regular, not-even-our-freakin doctor has to say about my decision to rigorously protect my child’s brain. Especially since I know he didn’t pull out a file or anything. Gah. So I’ll have to go elsewhere–and probably pay out of pocket–but that’s fine.
We wrapped things up with a prescription for some private PT. Charlie is so into walking right now we’re going to see if we can get some extra time in on that. I also got all my paperwork signed so I can get a handicap license plate. That’s where we’re supposed to park for school, so we need to get one.
So, yeah, great visit. Still have to get past the EEG, but hopefully that will be fine too. In the mean time I’m just going to be happy about where we are right now.