This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. And now adding Emily to the list.
Today we met with the neurologist. Parking was a breeze, fees were waved. There were no other patients in the waiting room. We had very little interaction with anyone, though we did have to check in and get a 'visitor' sticker before heading to the appointment*.
This was Emily's initial visit with a neurologist, and William is the only other child of mine who has seen a neurologist, for fear of seizures.
After interviewing me, and her, and asking a ton of questions, and reviewing her EEG, his current opinion is that she is having anxiety, not seizures. Seizures in HPP patients tends to be very apparent in their alp and B6 levels, and she has normal range in both of these. I'm not completely ready to accept that it is not HPP related, especially with Billy's symptoms. But either way we have to wait.
He has recommended some literature (that I've now ordered) so that we can treat the anxiety, but we are to follow up as needed.
This is good news, I guess. The EEG is a test that can be 'interpreted' and therefore can be misconstrued or misread depending on the doctor. I'll be keeping a log (something I'm actually pretty good at) every time she has an episode, and we'll work through the literature just in case.
She is scheduled for an appointment with the endocrinologist in early June, so we will revisit this then, unless something major happens to merit a visit.
So, today, I'm left with the impression that we travelled close to three hours and exposed ourselves to the nasty coronavirus, for an appointment that could have taken place virtually. And we know nothing new. = (
later days
<what happened previously
what happened next>
*Sarah gave us some masks that Emily sported during our trip!
This was Emily's initial visit with a neurologist, and William is the only other child of mine who has seen a neurologist, for fear of seizures.
After interviewing me, and her, and asking a ton of questions, and reviewing her EEG, his current opinion is that she is having anxiety, not seizures. Seizures in HPP patients tends to be very apparent in their alp and B6 levels, and she has normal range in both of these. I'm not completely ready to accept that it is not HPP related, especially with Billy's symptoms. But either way we have to wait.
He has recommended some literature (that I've now ordered) so that we can treat the anxiety, but we are to follow up as needed.
This is good news, I guess. The EEG is a test that can be 'interpreted' and therefore can be misconstrued or misread depending on the doctor. I'll be keeping a log (something I'm actually pretty good at) every time she has an episode, and we'll work through the literature just in case.
She is scheduled for an appointment with the endocrinologist in early June, so we will revisit this then, unless something major happens to merit a visit.
So, today, I'm left with the impression that we travelled close to three hours and exposed ourselves to the nasty coronavirus, for an appointment that could have taken place virtually. And we know nothing new. = (
later days
<what happened previously
what happened next>
*Sarah gave us some masks that Emily sported during our trip!
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