Back to School, Phone Calls with Mayo and another Diagnosis

Did you see the local newspaper from September 4th?  Leah was on the front page!

http://www.stcatharinesstandard.ca/2012/09/04/a-new-start-for-leah

Special thanks to Standard Reporter Grant Lafleche for another fantastic article!

Leah and the rest of the crew got back from the cottage on Sunday September 2nd.  It was so wonderful to see them all after two weeks.  Paul had kept a journal detailing her medications and making notations about her symptoms or in this case, lack of symptoms!  Other than a few small blips, she had a perfect two weeks.

Leah started back to school with all the other kids in the region.  We were better prepared this year and had made contact with the school and her new teacher.  All the new information we had gathered at Mayo Clinic was shared with the people that need to know.  We felt confident sending her off this year, for the first time in a long time.

Her first week was fantastic, she had no complaints, loved being at school and absolutely loves her teacher.  Then the weekend came and she started to feel tired, had lost her appetite and spent a lot of time cuddling a stuffed animal and laying around.  Monday morning she woke up blurry and dizzy, emotional and clingy.  We encouraged her to go to school and try and make it through the day.  I felt horrible!  But I know that this is her new normal, and there will be plenty of days when she isn't going to feel 100% and we will have to nudge, push and prod her to "suck it up" and carry on.  While that goes against my soft hearted nurturing side, my logical side says it is necessary.

The good news is she made it through that day and managed to stay at school the whole day!  The bad news is she felt the same yesterday morning, again, we encouraged her to go to school, but this time she came home shortly after lunch.

I am not sure what is causing her regression, it could be her meds need to be adjusted and we will be addressing that at her pediatrician's appointment on Thursday.  It could just be that the excitement and stress of the first week of school finally caught up with her, or maybe she is already fighting off one of the many back-to-school viruses.  The doctor from Mayo has already recommended upping her Keppra.

I guess this is my new normal, always troubleshooting!

I have again spoken with the Mayo Clinic.  This time it was to finally get the results of the last round of bloodwork.  They had been exploring the theory that she had more autoimmune issues going on in her body and the possibility that all of her issues could be attributed to an Autoimmune Disorder.  Well the news isn't good, they have diagnosed Hashimoto's Encephalopathy.

We are still trying to assimilate all the new information surrounding Hashimoto's Encephalopathy (HE).  There is a lot to learn and it is difficult to find reliable information regarding how it affects children.

I also finally got the written report from her Autonomic Testing.  While her blood pressure and heart rate were fine, as part of the conclusion, it was noted she has a "Severe Postganglionic Sudomotor Failure".  Basically this result represents the findings of the QSWEAT test.  Basically her Central Nervous System did not respond properly when prompted to sweat.  They had attached 4 sensors to her to monitor sweat production and only one sensor was able to detect any sweat at all and that was only a minimal amount.

So, what does that mean?  I really have no idea, my research is not getting me very far, so I will have to wait to speak with one of the neurologists again.

Meanwhile, the neurologist at Mayo would like Leah back in 6 months to redo the MRI, the Autonomic Testing, and bloodwork to chart the progression of her various disorders.  I am attempting to set it all up here and just send him the results.

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!

Follow Up appointment

Well today's appointment kinda stunk.

We waited so long for today - 7 months!, gave up Leah's chance to go to the cottage with the family, pinned our hopes on getting some sort of new information, but nothing, nada, zip, zero, bubkis!

Basically we are back to square one, the neurologist is stumped, he is setting up appointments with a Paediatric Cardiologist, an ultrasound of her heart (echocardiogram), a week's hospital stay for a VEEG-Video EEG Monitoring, another kick at the can with a holter monitor, and possibly some Autonomic Testing to try and induce an episode.  When I asked how soon ANY of this was going to occur, he replied MONTHS and to schedule our next appointment for after all the tests and appointments were done.

So basically, the plan is this, wait, wait, wait, and wait some more.  Have a test.  Wait a bunch more, have another test, wait a whole lot more.  Meet with the Cardiologist to tell him/her everything we have told all the other doctors and specialists, schedule some more tests.  Wait, wait, wait, wait some more.  Have another test or two.  Make an appointment, wait for 3-6 more months, have the appointment.  All in all it will probably be another year at least before we see him again.

This is why it is so SO important that we get Leah to the Mayo Clinic.  In one week she will see doctors and specialists from a variety of disciplines, she will be tested in so many different ways, results read and acted on immediately, our scheduled appointments adjusted as needed to see who we have to see while we are there.  In 8+/- days we can accomplish what it will take months or years to accomplish here!

Leah's Appointment Schedule and Fundraising Update

Can you believe it?  They have already sent us a preliminary schedule of the first couple of days of Leah's visit!.

August 7, 2012 - Tuesday
	Urine Test
7:45 AM	Dr. Amie E. Jones, Consultation
10:30 AM	Chest X-ray
11:00 AM	Electrocardiogram
August 8, 2012 - Wednesday
7:00 AM	Blood Tests
7:45 AM	Autonomic Test
12:00 PM	Electroencephalogram (EEG)
August 9, 2012 - Thursday
8:45 AM	Kristi R. Luenzmann, M.A., L.P, Office Visit Department of Psychiatry and Psychology
2:45 PM	Dr. S. Kotagal, Consultation Department of Pediatric and Adolescent Medicine

They have been in contatct with me via email, they also want to do a repeat MRI to follow up on the "abnormality" noted on her previous one.  Her first MRI found "evidence of nonspecific peritrigonal white matter changes."  We were told at the time that it wasn't a big deal, most people over the age of 50 have some sort of white matter change due to TIAs, migraines etc.  That never really sat well with me, so I am glad they plan on doing another one to see if there have been any changes.

On the fundraising front, things are full speed ahead.  Letters have been sent off to Doctors, Green Shield (our benefits provider), some Service Groups, Leah's school and a couple of other places.  Personal contact has been made with others.

My wonderful girls have been holding playground meetings and coming up with some plans of their own.  I hear there are keychains, bookmarks, necklaces and bracelets in the works.  Many school friends are bringing crafting supplies to school, hunkering down on recesses and lunches and crafting up a storm for Leah!  And they are very proud to announce that they already have some orders!

At home, we are busy creating Leah's Angels.

We hope to sell these in the school, garage sale, friends and family, Facebook, maybe a store will sell them at the cash register, I see no limits!  :)  A week from now is a school holiday, the girls will have their friends over and we are going to have an "Angel Making Bee".  I am sure there will be beads flying everywhere, but we will get lots done!  Many hands make light work, and they have all been so eager to pitch in and help.  We truly are blessed to have so many wonderful friends - big and small!

Another friend is pitching a "Loonies for Leah" drive at her work!  How awesome would that me if it caught on at other workplaces!?!?

As always, thanks for your thoughts, prayers and kind words.  The emails, phone calls and notes are so appreciated.