Wednesday, May 25, 2016

How to talk to the mother of a pediatric stroke survivor

As the point of this (somewhat less than continuous streak) is to raise awareness about pediatric stroke, I figure I should have at least one explicitly informative post about pediatric stroke survivors and their families.  So here goes.

How to talk to the mother of a pediatric stroke survivor

Soccer Spring 2016: Hemikids want medals, too.
That's easy.  Speak to her and her child the way you would speak to anyone else.  (Unless, of course you are generally a jerk to people, in which case you should quit it.  Or if you mutter things like, "but at least she is cute" or "God only gives you what you can handle" or offer unsolicited parenting advice with a judgmental sneer.)

How to be up on pediatric stroke lingo when you talk to the mother of a pediatric stroke survivor

This requires much more explanation, and is less generally applicable (it turns out that I am not the first to come up with "treat others as you would like to be treated" and it works in many situations), but here goes.

CP = cerebral palsy  An "umbrella diagnosis" inconsistently applied which refers to symptoms of motor impairment as the result of brain damage before the age of two.  Cerebral palsy is not degenerative, however the impairments may become more pronounced with time.  A lifetime of differential use can lead to different to limb lengths and an unusual gait both of which can lead to more serious joint problems. even though the brain damage is not expanding. Seizures and spams can both increase with time as well.

RH= right hemiplegia  (or right hemi) having motor impairment on the right side of the body (as a result of brain damage on the left side of the brain).  Aster is a RH.

PT, OT, SLT  Physical therapy, occupational therapy and speech language therapy.

SPD = sensory processing disorder.  Many "hemi-kids" have issues as being easily over-stimulated or by being stimulation seeking.

Physiatrist = Physical Medical Doctor or Physical Rehabilitation Doctor  A physician who specializes in movement.



IEP = Individualized Education Program  A unique plan for every child in a special ed. program.

CIMT = constraint induced movement therapy (I think).  Forcing use of the affected side of someone's body by making the non-affected (good) side non-functional (often through casting).

EI = early intervention   State-based programs to get young people (under 3) help they need.

AFO = ankle foot orthosis  A brace

CHASA - the Children's Hemiplegia and Stroke Association-- THE place to go to learn more about  pediatric stroke or to donate to small scale programs that help families of kids with hemiplegia learn from each other, share suggestions, swap shoes, learn about research programs and feel much less alone.

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