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A roll of the dice
Read more: A roll of the diceParents of kids with disabilities are not given some special dispensation that prepares us to handle everything that comes our way. We are just like other parents, but we inherit a workload and an emotional load a million times harder from the day our child is born. (Yes, I have a neurotypical child, too.) Some…
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Glasses and grief
Read more: Glasses and griefThese few episodes in Isaac’s early years are just a snapshot of our experience as his parents. It felt like there was something unexpected around every corner. The grief of having a child with disabilities is not a single event but something that unfolds continually over time. And I suppose what I really grieved, over…
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Our story & my WHY
Read more: Our story & my WHYThis is a recap and round up of posts about our early years with Isaac in case you missed any along the way or are just finding our story. Please share widely and invite your friends to read along, too.
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A Rare Diagnosis
Read more: A Rare DiagnosisA peek behind the curtain into a parent’s grief and what it’s like to receive a rare diagnosis for a child.
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Reflections & Resolutions
Read more: Reflections & ResolutionsI was prompted to think about Isaac’s progress in particular when one of the websites I follow put out a request for PANS/PANDAS triumphs. Our big one is this: In May of 2023, Isaac completed his 23rd round of IVIG. It may be impossible for us to know what complete healing will look like, but…
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PANS Awareness at the Texas Capitol
Read more: PANS Awareness at the Texas CapitolMonday was a big day. I took the kids with me to the state capitol in Austin for a PANDAS/PANS “Meet and Greet,” knowing very little about what to expect. As it turns out, the group responsible for the event, Texas PANDAS/PANS Advocacy & Awareness, is a brand new organization started by parents whose first…
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October 9 is PANS Awareness Day
Read more: October 9 is PANS Awareness DayToday is PANS Awareness Day, and I’m on my way to Austin for a PANS Awareness meet and greet with Texas lawmakers that I just learned about last week through a comment on one of my Facebook posts. Isaac (15) and Gillian (11) have the day off from school, and I’m taking them with me. …
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What is PANS?
Read more: What is PANS?October 9 is PANS Awareness Day. Please take a few minutes to learn the signs and symptoms of this syndrome, many of which could be diagnosed in isolation or mistaken for another medical or behavioral problem. In our son’s case, it was an onslaught of nearly all of the below symptoms three to four weeks…
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The Short Story
Read more: The Short StoryOur family’s story needs to be told. At 15 months of age, our son Isaac was diagnosed with a rare genetic variation. He was never an easy child, so it registered as “more of the same,” albeit deeply troubling, when at age four, he progressed from difficult to nearly impossible. Week by week, month by…
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PANS Awareness, October 9
Read more: PANS Awareness, October 9PANS is a complex immune-system disorder that too often flies under the radar as “behavior problems” but is actually caused by inflammation of the brain, triggered by a virus or other infection. PANS is not uncommon; it is uncommonly diagnosed. It is estimated that PANS affects one in 200 children/youth, which means there are kids…
Gray Colored Glasses 