We fell from our comfort zone this week by small seizures, spasms that would strike each minute continuing for days,
We reached our maximum in emergency medication, drugs designed to stop, suppress and slow down a cluster,
Pipers breathing became shallow, her skin pale, secretions uncontrolled and seizures remained! our lifeless little girl became in need of intervention.
the spasms we've seen before, the difference, there is no
break in this cluster, I worry about the effects of each little misfire in the brain,
sometimes it's the continuous small seizures which cause the greater damage, pipers emergency medication nor the loading dose the hospital provides are able
to slow the seizures, the nurses reassure us we've done all we can from home, piper then receives triple the amount of her usual medication and still the spasms continue, bloods are taken and return clear of infection, why is this suddenly happening.
Today (Tuesday) finally there' s a smile, there's a spark, there's Piper, Yet smiles are overtaken by a continuous cluster of interrupting little spasms, this afternoon another maintenance dose which again sends piper into a deep
sleep, finally a little mind at rest.
until eyes open wide ......
By Wednesday we continue to grow anxious if only we were in Melbourne perhaps then we could see this activity on an EEG locate
the areas that are firing in order to gain some type of control, perhaps a clue into the mystery that is this syndrome, finally our concerns are heard after we inform our local paediatrician of Pipers current status, it's now eight days since this seizure
type presented, five days of constant continued activity and no control! We've medicated so highly now, And little has changed
It's been a difficult week
Today (Thursday) we finally arrive at the Royal Childrens
Hospital our safety net.
We find a moment to catch our breath, as our little girl is finally where she needs to be.💜x