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Our HH Family Enrico Picone |
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Greetings to all, We
are the parents of 8-year old Enrico Picone who was diagnosed with
Hypothalmic Hamartoma at the age of one - 1998. When
he was about 6-months old we noticed him making strange noises and as time
passed by it turned into spasms, rotation of the eyes and losing his
equilibrium. Each day that passed these symptoms worsened and on
consultation with our Pediatrician assured us this was nothing to worry
about and the baby was in good health. In her opinion this was Enrico's
way of getting our attention! Not convinced we requested further tests
which included an EEG which showed abnormalities. Immediately
Enrico was admitted to the Department of Infantile Neuropsychiatry , a
hospital for children in Palermo, Sicily. There many examinations and
tests were performed including a CT Scan which showed evidence of
something irregular in the brain and finally a MRI was done which showed
the Hypothalmic Hamartoma. The
doctor in charge, chief of Pediatric Neurology recommended Enrico be
brought to a specialized center and operated immediately... but where? (in
1998 there was little information re this diagnosis and the possibilities
of removal by surgery were risky to say the least) At
this point Katia and I began our long journey and consulted with many
physicians throughout Italy. In Rome we visited a Neurosurgeon (Chief of
Neurosurgery at the University of Tor Vergata) who explained Enrico had no
need for surgery, he had seen larger hamartomas which self-dissolved and
the seizures with the passage of some years would also pass. That
neurosurgeon referred us to the Neuropsychiatric physician at the
University who immediately prescribed diverse medications (Depakin,
Frisium and Topomax) which reduced the seizures which now were at
approximately 30 per day to three or four per day. Unfortunately,
this regimen resulted in Enrico losing his capacity to comprehend,
reduced his motor skills and vision, added weight gain and spending the greater
part of his time sleeping. The years passed by with our continued efforts
to find a doctor who could help our boy now 6 years old and in one of the
searches we met a neurosurgeon from Neuromed of Pozz, Isernia, Italy who
suggested a non-surgical intervention by the Cyberknife telling us Enrico
would be cured of seizures. For
varied reasons this procedure was cancelled many time - the doctor did not
have a Cyberknife and depended on the University Hospital to make it
available to him. Sadly during these times Enrico regressed so the doctor decided to schedule a procedure with a linear accellerator wherein he would be placed in a headring (invasive) or Halo for the whole procedure with the grave risk to his eyesight and even becoming comatose. However the machine had mechanical problems and the procedure was not performed. This was in April/May 2005. In
desperation having returned to Sicily we called our relatives in Chicago
and it was through them we discovered there was a hospital in Phoenix,
Arizona called St. Joseph's wherein existed "The Barrow Institute of
Neurological Sciences" who had successfully performed interventions,
invasive and otherwise for the Hypothalmic Hamartomas. We contacted the
institute immediately. The Neurological Team responded immediately
requesting the history of Enrico. They discussed Enrico's case thoroughly
and decided he was a good candidate. His
surgery was scheduled for July 29th 2005. Arriving
in Phoenix, AZ from Sicily, Italy and having had all the necessary
preliminary visits, Enrico was operated by Dr. Harold Rekate,
Neurosurgeon 7-29-2005. From
that day our baby boy has had no seizures, has improved significantly with
what was an extremely aggressive character, sleeps normally, eats normally
and has become more tolerant and patient. We have a long way to go to
catch up on the lost 7 years but this will be a much easier task with the
hope that has been given to us by God and all those who touched our lives
, the medical and surgical staff at the Barrow Institute, our relatives
and friends in Italy, and the United States, the Italian Government and
their Consulate in Phoenix, AZ who all have made our journey most
successful. Enrico
is improving wonderfully day by day and with our heartful, HUGE -
TANTISSIMI - thanks to the physicians and all the staff at the Barrow
Institute. The parents of Enrico, Piero and Katia Picone |
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