Okay so this hospital visit went completely sideways from what we were expecting! From July 2010 to June 2011 Stephanie's neurologist continued her exhausting search for what exactly was happening with Stephanie. First the increased intracranial pressure, now the seizures. Even her protein levels in her cerebral spinal fluids continued to be elevated over that past year since her first hospitalization.
Taking these things into consideration and after a detailed consult with her mentor/colleague in the USA, the neurologist was quite sure that Stephanie had Cerebral Vasculitis - inflammation of the small vessels in her brain. We had made a plan to admit Stephanie into hospital under this diagnosis and begin treatment immediately as it was usually a quick and fatal disease.
The treatment was similar to monthly chemotherapy treatments but would have to last for 18 months. The initial startup would take place in hospital to make sure Stephanie could handle it.
After being admitted, the neurologist had a consult with the treatment specialist in this regard and it was strongly suggested that no treatment begin until we had a confirmed diagnosis. The only way to make a diagnosis of Cerebral Vasculitis was by way of a brain biopsy!
Well, as you see from the pictures below, I decided to go ahead with the brain biopsy since this disease could be fatal. For me, that possibility outweighed the possible risks of the biopsy. In addition to the biopsy, she also had a CT Brain Angiogram and another lumber puncture - which was surprisingly low for some reason (17 cm H2O).
And again, as every other test and procedure had shown, results of the biopsy were normal. This was extremely disheartening and a great relief at the same time. Stephanie had already been through so much and I didn't want her to have to go through 18 months of treatment, but at the same time I had hoped for an answer.
After this visit, the neurologist felt that it was her duty to refer us to another team for a second look at all her symptoms, in case she was missing something. She asked to send us to the Toronto Hospital for Sick Kids in Ontario in the next few months.
June 27, 2011 - Just before getting ready for the brain biopsy
Stephanie's classmates and daycare friends made some wonderful get well cards.
Arriving in her room after biopsy...
By the next day her left eye swelled shut...
And the day after discharge both of her eyes swelled shut...thankfully the right one only swelled completely shut for a couple hours and then started to open again. I was about to take her back to the hospital if it didn't resolve quickly.
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