We met our neurologist today. I like him. He listened without interrupting, spoke directly to Babygirl when appropriate, and didn't rush to make a final diagnosis without some extra information.
We continue to carry the diagnosis "Headache NOS" ('not otherwise specified' for those of you unfamiliar with medical code terminology). He ordered an MRI of her brain, an MRI of her cervical spine, and (not unexpected but YIKES anyway) a spinal tap. He did not feel that it was emergent, so we came home. No admission today, yippee! I guess packing the extra undies worked.
All of these things, in the absence of an emergency, require prior authorization from our insurance. Who knows how long that will take, but it was less than a week for them to authorize her kidney transplant (and months to get it as we all know!). Once authorized, they plan to schedule them all for one day.
Each MRI takes a full hour and requires that she lay perfectly still the entire time. And the spinal tap? On an adult it's a procedure under local anaesthesia. For a kid, sedation is advisable. Frankly I think she'd be able to handle the tap more easily than the MRIs.
Before I even arrived home I had a phone call from the sedation team nurse. She had the office notes from today's visits, and also the sedation records from Babygirl's kidney biopsy last May ("This is odd - they say she's VERY ticklish." Um...yeah.). It was her opinion that Babygirl's weight gain and increasing body mass index put her at risk for unsupervised sedation in an MRI machine. She feels her airway could relax enough to allow her to stop breathing, so she is recommending full general anaesthesia so she can be ventilated to protect her airway while she's out. So now the co-ordination is between general anaesthesia, MRI and the spinal tap area (?).
This could take a minute.
Meanwhile, they have given us the Migraine Diet to follow. No chocolate (including hot chocolate or chocolate milk), peanut butter, pizza, cured meat (ham) or Chinese. There's more, but those are the ones that hurt. I won't be able to serve quiche or anything made with aged cheese. Pork is limited, no sausages, hot dogs, cold cuts. Some of these things overlap with the post-transplant diet, but many are things she couldn't have while on dialysis that she's been very happy to have back.
This kid just can't seem to cut a break, but at least they are finally working on it.
DeeDee
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