Day 2 at the Mayo Clinic

Our second day at the Mayo Clinic was just as good as the first.

Leah had a round of blood work first thing and then we went straight over to her Autonomic Testing.  This testing allows us to see if her Central Nervous System and her involuntary reflexes are working properly.  This test rules out Postural Orthostatic Tachycardia Syndrome (POTS).  I was able to be in the room with her throughout the testing (which was very cool!) and she had no issues with any portion of it.  Her heart rate and blood pressure remained stable, she had no symptoms of her episodes and her CNS responded normally throughout.   So another thing to cross off our list!

Next we headed to MRI.  Leah breezed through her last MRI and so she had no hesitation about heading into this one.  In fact, she was so calm that part way through it she fell asleep!  I am anxious to get the results back on this to see if she has developed any more White Matter Changes or if the one noted previously has changed at all.

The super awesome cool part of all of this is, Leah has an online patient account with Mayo.  When test results are ready, they are immediately posted to this account!  The Doctor's notes, clinical notes, medication history, immunization history, medical records etc are all immediately updated within this online account.

So Leah's bloodwork results are already posted, based on those and her symptoms is seems like a diagnosis of Hasimoto's is coming.  We will find out more on Friday afternoon.

Today we are packing up and making the move to Ronald McDonald house!  This will be a big relief and money saver for us.  We will actually end up being a little further away from the hospital but shuttles run about every 15 mins, so it really won't be that big of a deal.  

Leah also has her Neurologist's appointment this afternoon - we will update afterwards!

MRI results

Today was the day Leah had her appointment with Dr. Hallett.  Leah was having a bit of an off morning and it shouldn't have been a surprise for me when she had an episode right in the middle of the exam...but it was, it caught all of us completely by surprise.

But wait, let me back up a little, Dr. Hallett is the Consulting Paediatrican from McMaster.  She is kind of like a Dr. House for kids.  When children develop problems that their regular Paediatrician, General Practitioner or Emergency Department can't handle/diagnose, they send them to the Consulting Paediatrican.  We got referred to
Dr. Hallett through the McMaster emergency department.  She is the doctor that finally gave us the referral for an MRI after we had been turned down by everyone else.

So we head off to Stoney Creek this morning, hit every red light on Centennial Parkway and show up 7 mins late.  With many apologies I got her checked in and then sat and waited and waited.  The appointment was for 10:30am, at 11:05am, I was consoling another mother.  She had already been waiting for 45mins for their first appointment.  I calmly explained to her that Dr. Hallett is totally worth the wait, our previous appointment had lasted over an hour.  She listens, does a very thorough exam, chats with the child, asks lots of questions and never makes you feel rushed.

I think we finally made it into the exam room at about 11:30am, we met with her "Fellow", a kind of assistant or Doctor in Training or something.  Anyway, she was extremely nice, friendly and thorough.  She listened attentively as I ran through Leah's history and took copious notes.  Then she started a physical exam.  As of today, Leah is 48 inches tall and 52lbs. 

According to a Growth Chart Percentiles calculator
At 7 years and 6 months:
your child is 52 pounds, and that is
at the 43rd percentile for weight.
your child is 45.5 inches, and that is
at the 4th percentile for height.

She then took Leah's blood pressure sitting, standing and then again after standing up quickly.  She was about to have Leah run on the spot when Leah suddenly plopped down on the chair.  She wouldn't speak, wouldn't explain what was wrong.  She only wanted to climb onto my lap.  Her pupils were huge, she was cold and she began to cry.  The assistant got her onto the exam table and checked her out then went to inform Dr. Hallett.  They were gone for quite a bit, during which Leah wiggled her way further and further onto me and off the table.

Finally, they came back.  They had called McMaster and gotten the results of the MRI Leah had a week ago.  Leah has "Non Specific Changes in the White Matter" of her brain.

The appointment ended quickly at that point.  It went without saying, that Leah was done for the day.  We were sent home with a promise that she would be contacting Neurology herself and SHE WOULD get us an appointment.

A few snippets about White Matter Changes

• White matter refers to the fibre tracts that carry information to and from the brain.
• The brain is made up of gray matter and white matter.
• White matter is where the hardware connects to carry messages to the areas of the brain.
• The brain is about 60 percent white matter.
• White matter changes are an extremely common finding in the MRI scan.
• White matter changes are commonly seen in demyelinating diseases.

Now we wait, again.

Tonight I can't decide if I want to waste my energy being mad at all the doctors that told us a MRI would be useless to us; that because the CT Scan was fine, an MRI wasn't necessary.   One side of me wants to call up our paediatrican and just let loose, but the other saner side says what would be the point.   I am however interested to see what he has to say when he receives the results.

Would it be out of line to needle him about it just a little bit?  I think I am petty enough to get some enjoyment out of that.

As always, please pray that we get the answers we are searching for, we might just be on the right path this time.