Emily's Anticlimactic Follow-up with the Neurologist

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

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*Sarah gave us some masks that Emily sported during our trip!

March 6th, Results from the EEG

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. And now adding Emily to the list.

The high today was cold windy, cold rainy, cold snowy, cold 35F.

Today we woke up slightly early, so that I could go help out at the book fair. For the first 15 minutes, mine shopped. So, they were ready to go once breakfast started. = )

Once school started only a few students trickled through. At 10 I left the fair in the capable hands of the librarian (who had worked the register most of the morning anyhow.)

I left for the Hold UMC church sale straight away, and met my mother in the parking lot. We collected lots of treasures in our $5 fill a bag. = ) Surprisingly, I only spent about an hour shopping, so I had time to come home and sort before going to collect my children from their second half day.

My mom invited Juliet to spend tonight with her, so I packed her an overnight bag before I even had a chance to ask if she wanted to go. Thankfully she did!

As my crew loaded up they were very excited about our planned McDonalds lunch. And, I had a surprise up my sleeve. Juliet's BFF's mom messaged me back about joining us, so we were able to surprise our Kindergartners with a playdate!

It was a pleasant way to spend a couple of hours. The kids played (and kind of ate) and I got to chat with a new mom friend!

While we were there the call to set up the next medicine order came in, and then the call I'd been waiting on, that met my worst expectation came in.

It was the kids' primary care doctor (never ever good) on the phone.  I knew she wasn't calling to tell me that Grace had strep, so the dread set in fast.  She looked at the results of Emily's EEG from January*.  Their were indications of misfiring** in Emily's frontal lobe while she slept.  She's referring us to a Neurologist in Grand Rapids.

I don't know how long it will take to get Emily established as a new patient.  Googling misfiring of the frontal lobe did little to calm me during this next wait.  Emily is handling it exceptionally well.  In fact, she hasn't even brought it up again since I told her.

Emily has hypophosphatasia. Seizures can be a symptom of hypophosphatasia. Please let it be caused by hypophosphatasia and not something new or worse.

later days

*I started trying to get the results about 2.5 weeks after her test, but I was calling the Endocrinologist, and since she didn't order it the results weren't send to her.  Their PCP is on a different network, so the results weren't automatically sent to her either.  Their office had to call and request the results, which took extra time.  So, it has been a very long wait for bad news.

**I'm 90% certain this is what she said, but I was not in a position to write anything down, so if her terminology varied from this, this was what my mind extrapolated.

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Review of Grace's Sleep Study

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. And now adding Emily to the list.

Back in September, Grace had a sleep study done.  They called with results a couple of weeks later, letting me know that everything looked normal.  We still had to schedule a follow up with the Pulmonologist, but he didn't have an appointment in Lansing until December.  Since nothing seemed off, we waited.

He looked at her chart, and results and declared that she looks good.  Her oxygen was at 99% in office, which is phenomenal.  He wants to do one more test up in Grand Rapids in about 6 months, just to have it on her chart.  But nothing looks amiss and she is doing awesome. = )

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We also now have a date for Emily's EEG.  I was able to schedule it for the same date as William's 3 hour blood draw!  This is so fortunate, because Billy will be able to drive us up, while I keep Emily awake, and at the hospital he'll be able to stay with William while I monitor Emily.

I want to say thank you to whoever has been praying for my sleep. I have been worrying about this during the day, but have not lost sleep over it once since the last time I posted, so thank you!  Please keep up the prayers, my sweet little children need them.

later days

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