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Saturday, October 5, 2013

Where's the logic?

All the doors in the house slam shut, all the blinds are shut and every light is turned off.  This is a ritual I previously thought was a silly quirk until it disappeared.  Now that it is back, the red alarms are going off.  It is not Brayden, it is his sister Teagan.  Our child that a neurologist recently termed as "scientifically intriguing". As a researcher, that is an exciting label, as a mother, it is terrifying.

I have spoke for the past few months about our journey with Brayden in battling PANDAs.  He is stable at the moment.  Not improving, but not regressing.  He will see a "expert" neurologist in New Jersey on October 14th and until that time, we just hope each day continues without further regression.

As for Teagan, I haven't posted much about our journey with her mainly because she is "scientifically intriguing" which means the doctors do not know.  She has been diagnosed with Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder (PITAND) which is a close relative of Brayden's PANDAS. Basically she has similar symptoms but we don't know the exact trigger all the time.  For Brayden, it is strep alone, whereas his sister is triggered by any virus or bacterial infection.  Her most recent trigger according to labs was a virus named CMV.  This is a relative to Chicken Pox and Mono and gave her mono type symptoms, along with the OCD type behaviors.  She was given an antiviral and all of those type of symptoms disappeared.

So why is she suddenly regressing?  On Friday, I received a call after school that the boy she sits next to left school early due to suspected strep. He had left school the previous day ill as well.  Teagan does not have any strep symptoms but she was exposed to it so her body naturally develops the antibodies.  So those antibodies start attacking the brain and there you have it. The doors all have to be shut.  Everything has to be done in a particular order that makes no sense to anyone else.  She screams in anger and throws anything that gets in her ritualistic way.

Therefore, we are not just taking one child to this expert neurologist, but two.  We are so hopeful that this man will give us the answers we desperately seek and the solutions that will put both our children on track. So hope along with us as we look forward to finally seeing a doctor that can find the logic in this chaos!