Sam has been a bit *off* for about a month or so. He wasn’t signing like he had been, he just wasn’t smiling and giggling much like he normally would., etc. Thankfully, the last few days he seems to be back to himself or at least getting there.
Well, being he hadn’t been himself, I made calls from everyone to his pedi to his neuro, to his genetics doctor trying to figure out what if anything was happening with him.
Today, I finally connected with his neurologist at the Gillette as to why she wants to refer Sam down to the Mayo Clinic (I am not opposed to the Mayo at all, both my husband and I had good experiences with them for our respective surgeries).
Basically she said Sam’s case is complicated (as we all know), she was looking at his MRIs from the University and on the report it mentioned a term she had never heard of about his brain malformation (sorry I can’t remember how you spell the medical terms she used). She was saying after reaching out to some other neurologists that his malformation could be larger then what shows on the MRI. She said that one brain hemisphere could be malformed or just a larger portion then we were told way back when. That was when we were told his left frontal lobe.
So long story short, this doctor at the Mayo has more experience with things like this. His neuro at the Gillette’s doesn’t want to miss anything and even if this doctor can’t help she said that it helps to have a doctor on the care team that is in a surgical center like the Mayo.
She and this doctor at the Mayo also find it interesting that even though Sam does not have any recorded seizures that he seems to do better every time his Keppra was upped in dosage. So she is questioning that maybe there is something surgically that can be done to kind of reset things if I understood her correctly or adjust medications, etc. There are many options from the easy to the rather scary if you ask me (just the words brain surgery kind of scares you. I know that’s a far off thing and maybe won’t even be something this new doctor suggests but it’s something to keep in the back of our minds nonetheless)
I was glad to finally connect with her and understand better as to why she was suggesting this.
Also I told her about how he had been for the past month or so, she said that if it happens again that we should bring him in him so they can do a eeg and maybe he is having seizures deep inside the brain).
I need to call the University and get his records down to the Mayo. Thankfully, Gillette’s is working on all of his records from them to get to this doctor down in Rochester.