Mayo Moments

Wednesday, 7 September 2011

Back to School

As with many other children in Ontario or maybe even Canada, I haven't really been paying attention to elsewhere, Leah started back to school today.

She was very excited, eager to get there, see her teacher with whom she had been with in JK, see her friends that she had missed so much over the summer, and of course to spend time with her "bestest" friend in the entire world - Megan. 

Megan and Leah are kindred spirits in every sense of the word.  When Leah isn't feeling well and can't spend time with her, Megan offers to come over and just snuggle in bed with her.  While the 3 of us were out for a fun day this summer, Leah had an episode and became very sleepy, Megan too "got very tired" and the sight of the two of them snuggled together in the back seat, Megan supporting Leah's head on her shoulder pretending to be in need of a nap too, just so Leah wouldn't feel bad moved me to tears.

Megan's mom is a teacher at their school and lucky for us, she teaches right across the hall from Leah's classroom.  She is going to be the school's first option when Leah needs help or assessment.  In the event that Leah faints/collapses again at school, she has already made arrangements to switch classes with the teacher and stay with Leah until medical help can arrive.  We are blessed to have that family in our lives and I can't thank them enough for the feeling of comfort and peace it gives me to know she is just a holler away should anything occur.

Leah and I went to school early this morning to brief her teacher on Leah's condition and symptoms.  Poor woman is hugely pregnant and looked a little freaked out by the time I was finished, but she was clear on what to do and we will be meeting again by the end of the week with the principal and the Resource teacher to develop a full emergency plan for Leah, that will be available and reviewed with all the staff at the school.  The plan gives them step by step instructions on what to do in each situation, has her picture on it, and all of our contact numbers.

We have also met with our paediatrician to get a status update.  Unfortunately, nothing much has changed.  Her EEG was clear, but according to my research and other doctors, that is not uncommon.  So another one has been booked at McMaster on Sept 15th.  We are still waiting and hoping for a call for the MRI.  I had her put on the cancellation list, but so far we haven't been called in early.  So we will probably still be waiting until Nov 5th, which is our scheduled date.  He seems to really be leaning towards epilepsy, but has mentioned narcolepsy and due to a newspaper article that caught our eye, we are also looking into a heart condition called  catecholaminergic polymorphic ventricular tachycardia (CPVT), an electrical disorder of the heart that is induced by physical or emotional stress.

I had really hoped that by the time school started back I would have some answers, but instead, it would appear we only have more questions.

As always, please share with friends and families and send me any ideas, thoughts or advice you may have.

Thanks for reading!

Kate and Leah


  1. symptoms sound similar to our friend's child who has hypoparathyroidism, it took forever to discover it for them. Have you had her calcium levels checked? It is a special test done only usually in hospital as there needs to be radioactive material to do the test.

  2. In order to persue all avenues, it might be a good idea to go to Sick Kids in Toronto and sit in the emergency area until she is seen by a doc tor who then might refer her to a neurologist or perhaps admit her and test her as needed. Sick Kids has a reputation all around the world for dealing with unusual problems.