What it means to be the parent of medically complex children…

I have shared a lot recently about my youngest son’s communication disability, but my older son also has Sensory Processing Disorder and an autoimmune condition known as PANDAS.

Pediatric Autoimmune Neurological Disorder Associated with Streptococcal Infections.

Today is national PANDAS awareness day and knowing 1 in 200 children suffer from this condition – a form of autoimmune encephalitis – I wanted to take a moment to raise awareness of this under researched condition.

https://pandasnetwork.org

The common signs or symptoms can include

  • Sudden, acute onset of OCD.
  • Restrictive eating habits.
  • Irritability or aggressive behavior.
  • Extreme moodiness or depression.
  • Deterioration of motor skills.
  • Tics and unusual movements.
  • Visual or auditory hallucinations.
  • Sensitivity to light, sound and touch.
  • Sleep disturbance or fatigue.

If you or someone you know have a child who exhibits some or all of these symptoms make sure to ask about PANDAS (or PANS / Pediatric Acute-Onset Neuropsychiatric Syndrome). Because early intervention and treatment can stop or even cure a child, left untreated it can cause permanent psychological and neurological issues.

We have been blessed to work with physicians who have supported our journey with PANDAS, but not everyone is that lucky. So awareness is key!

Parenting is a gauntlet of decisions – every single day – that shape the outcomes for our children. Some days those decisions are small. Some days the decisions are so large and heavy they seem too hard to make.

The risks. The rewards. Our hopes. Their dreams. And for those of us navigating the complexities of disabilities, long term or chronic illness and/or neurodiversity may we all give each other the grace to trust we each are doing what is best for our children… even if we do not agree with each other.

PANDAS National Awareness Day, October 9th, 2021.

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