Very important!!

Iván NOSPAMivansamojluk at ua.org.ar
Fri Mar 24 03:06:16 EST 2000


Subject: SOLIDARITY
Date: Fri, 18 Feb 2000 16:13:41 -0500

Please, read it until the end. It is not money, it is direction.

HAPPY BEGINNING
Pedro is our first and only son. He was born on 04/03/89, when we were 26
and 31 years old respectively. He was a very wished son and loved from the
very beginning. The pregnancy was normal and we carried out the proper
monthly medical checkups. The childbirth was Caesarean, because as to the
anticipated date (3/31) there were no signs, we decided on the surgery.
Pedro was born very well. He cried immediately and I had scale 9 of Apgar.
He was born measuring 48cm and he weighed 3.430kg. His first year of life
was optimal, with a perfect development and no disease.
He was seating at five months, walked at 11 months, said the first words at
7 months and before that, he already emitted the natural sounds of a baby.

The SCARE
Being a year and two months, certain afternoon, during sleep, Pedro woke up
scared, as if he had been choked. This happened again some other days until
we went to the doctor. The doctor, that saw one of the crisis, suspected
gastroesophagic reflux and requested some tests. By this time, the crisis
happened about 10 times per day and lasted approximate 15 seconds. As the
tests did not indicate anything, by the doctor's advice, we looked for a
child neurologist that said that those were convulsive crises. We did a
first electroencephalogram and it was normal. We looked for Dr Salomón
Schwartzman, who examined him, finding him neurologically perfect.

QUESTIONS WITHOUT ANSWERS
In this period, the crises increased in number and intensity. In AUGUST 1990
he was committed in the ICU for the first time with a crisis approximately
every 3 minutes. He was 20 days in the hospital and left with the crises
somewhat under control. He had a computer tomography and it was normal.
A second electro, detected an irritating center in the side right of the
brain. In
spite of all this, he continued developing normally, although he was more
sleepy. The crises continued and were mixed crises.

In OCTOBER OF 1990, we noticed that he was smiling and crying less and less,
And when he smiled, the left side of its face seemed paralyzed.

In NOVEMBER OF 1990, we realized that he used the left arm less. The doctors
said that those were sequels.

In DECEMBER OF 1990, they did a Magnetic Resonance of the skull, an
examination of the Back of the Eye and some tests to detect Innate Errors of
the Metabolism. All the results were normal. At this time, he already
displayed difficulty to walk and spoke less. He more or less maintained an
average of 20 crises per day.
Throughout seven months, we changed many doctors and several Anticonvulsive
medications were tried. Nevertheless, the effect was never totally
satisfactory and was committed twice to control more frequent crises.

In JANUARY OF 1991, Pedro was committed once again and left the hospital
without walking, seating or speaking.

In FEBRUARY OF 1991, he was committed once again with very strong crises,
and spent 20 days in the hospital. The crises already lasted 1min. and they
occurred every 10min. In this occasion he was given cortisone and they did
several metabolic tests to him without finding anything. His motor skills
became still more jeopardized.
When they discharged him, he could not hold his head, he could not seat on
his own and he seemed not to recognize anybody, aside from not fixing his
glance onto anything.

The time was passing by, with physical therapies and much affection; Pedro
was having some small progress. We continued our "marathon " of doctors and
tests, but nothing was happening. His crises started to be a little more
controlled, occurring only during sleep, approximately 8 events per night,
lasting near 1 min.

At the end of 1995, he had several consecutive days without displaying a
crisis, up to a maximum of 4 days. In these last years, some tests have been
repeated, without anything new happening. He had several pulmonary
complications and he took several antibiotics.

In the LAST MONTHS OF 1995, Pedro recovered the control of the head and
attained greater firmness in the trunk. He began to fix his glance onto
people and objects, without showing any desire to touch them. His face
became more expressive, in spite of still not laughing nor crying.

In JANUARY OF 1996, we repeated the Magnetic Resonance that looked just like
the previous one, within the patterns of normality, according to the doctor
that signed the report. His present doctor, Dr Fernando Arita, thinks that
he has a brain a little less dense than the one of a boy of his age. We also
repeated the electroencephalogram, that was far better that the previous
one, with crises located more in the right frontal side. We also made a
study of cariotype (father, mother, son) with Dr. Rita de Cassia Stoco and
nothing was found. She said to us that she suspected a Mitochondrial disease
and she suggested we had a DNA study done. Also she measured amino acids
titers in the blood and a matography of sugars in the urine.

WE CONTINUED FIGHTING
 At the moment, Pedro experiences near 4 convulsive crises during sleep,
mainly as of hours of dawn. In his crises he stretches arms and legs, he
turns the head to the left side and cries. They last near 45 seconds. His
attention continues fixed in people and objects, but he does not move
spontaneously. He recovered a reasonable control of the trunk, but he does
not seat up, does not stand up, does not speak, he does not smile nor cries.
During the last two years, he developed a quite worrisome scoliosis. He is
medicated with Rivotril, Valpakine and Tryleptal.

During all these years, we did not find an answer for what is happening to
Pedro and, we did not find anybody with a similar problem to exchange
experiences.

If you can help, if you are a doctor or knew of some boy with the same
problem, please, write to us. Otherwise, please transmit this message to
your acquaintances and friends so that it can find its correct destiny.

Very many thanks,
Liane and Manoel.

Rua Conselheiro Brotero, 1559 - Apto 134
 01232.011 - São Paulo - SP - BRASIL
 Telefone: (005511) 3662-4826
 E- mail: liane at sti.com.br
 Página Web: pedro.psinet.com.br


Note: The simple fact of relaying this message is by itself a solidarity
act.


 Iván Samojluk
 Dpto. MiPES de la UA

 Iván Samojluk - Unión Austral.
 Echeverría 1452 - 1602 - Florida.
 Buenos Aires - Argentina.
 Tel. (011) 4760 - 0236.
 Fax. (011) 4760 - 9092.
 E-Mail. ivansamojluk at ua.org.ar

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