Mayo Moments

Wednesday, 12 September 2012

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!

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.


  1. Awwww poor leah!!

  2. Fear of the unknown is difficult, so I'm glad you got answers. Even if you are still trying to wrap your brain around all of the test results and diagnosis, at least you have an idea of what Leah is up against. You are such a strong, brave and determined mother. I wish a mother's love was all it took to cure an ill child. Best of luck to you and your family. You are still in our prayers. - xo Stephanie