So what is HHE – Hemiconvulsion Hemiplegia Epilepsy Syndrome???

Hemiconvulsion-hemiplegia-epilepsy Syndrome (HHE) is a neurological disorder, which presents itself as a febrile illness at the onset. Fevers and convulsions are only reduced/stopped via medications. The patient is left with a resulting hemiplegia from the affected hemisphere. MRI and EEG tests show a resulting acute atrophy of one hemisphere of the brain – of which will depend on the severity of the hemiplegia.*

*as was this case for our family – our son’s MRI results showed his left hemisphere had considerably reduced in size. 

There is no cure at the moment for this severe refractory epilepsy.  There is only management of the condition itself which requires a high dose of anti-epilepsy medications which present a whole host of side affects – cognitive interruption – fine and gross motor skills impairment, memory issues which affects learning abilities, you get my drift.  It’s complicated, it’s messy, it’s scary BUT… with the advancement of medical breakthroughs and therapies that are proving to be effective, there is a brighter future for our kids that live with this condition.

Over the coming weeks, I will talk more about this condition and the other families who we have met along the way, who have a child with HHE.  What therapies work well, family support and the rules are kids are breaking!

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