Jimmy was off to a rough start with Hydrocephalus, Microcephaly, Colpocephaly, Agenesis of the
Corpus Collasum, Chorioretinitis, Macular Colobomas, Cerebral Palsy (Spastic Quadriplegia) with
Hyperreflexia, Lennox Gastaut Seizure Disorder, an asymmetric aortic valve, and nerve deafness in one
ear.  This was all secondary to Lymphocytic Choriomeningitis (LCMV), which is due to my exposure
(during the 2nd and 3rd trimesters of my  pregnancy) to a pet guinea pig infected with the virus.

During a routine sonogram the day after my due date, just to be sure I had enough amniotic fluid to
sustain the pregnancy for up to two more weeks, something was terribly wrong.  Jimmy had 5.8
centimeters of fluid on his brain.  There was supposed to be just 1 centimeter.  In Syracuse, I was told
that he was missing a significant portion of his brain, and that he was likely to die within a day of birth.       
I decided to search for a more positive atmosphere and approach!  I found all that and more in Rochester
at Strong Memorial Hospital, clearly a cut above the options available to me locally, and it was only 100
miles away.

In Rochester, Jimmy was born, and he received a ventriculo-peritoneal shunt to drain the excess fluid
from his brain.  Everyone there was compassionate and supportive, and they gave us the best news of
our lives....Jimmy would live!  Ronald McDonald House accommodated my family during our hospital stay.
Doctors kept insisting that calcifications found on the MRI of Jimmy's brain at birth were caused by
Toxoplasmosis, but I knew better.  I had not been exposed to a cat.  I knew all about Toxoplasmosis
from reading pregnancy books.  I began researching on the internet for viruses that mimicked
Toxoplasmosis, and that's when I found it....Lymphocytic Choriomeningitis (LCMV), a rodent-borne
arenavirus, mimicks all of the classic symptoms of Toxoplasmosis exposure during pregnancy....and I
had recently purchased a guinea pig as a present for my daughter's birthday.

Doctors hesitantly fulfilled my request for a blood test for the not-so-well-known virus.  To everyone's
surprise, the test came back positive.  I had basically self-diagnosed my son, and only two doctors in
the United States had ever heard of this virus.  Jimmy had the first documented case of LCMV.

We spent the first three years of Jimmy's life taking him to specialists for practically every body
function.  We have also spent this time concentrating on therapies that will benefit him and prevent future
surgeries.  Keeping Jimmy's body stretched and moving is his best defense against muscle wasting and
contractures, hip sublocation, and chronic pneumonia.  So far, this strategy has paid off....no painful
Botox injections, no surgeries, and fewer hospitalizations for upper respiratory infections!  Another
important note is that we have found that pediatricians are great for basic physicals and treating
common illnesses, but when it comes to disabled children, it is paramount to have a developmental
pediatrician to address the child's individual disabilities and the trends/common ailments that arise
because of these unique circumstances.  This is why every disabled child should routinely visit Kennedy
Krieger.  Kennedy Krieger and Johns Hopkins have provided us with the outline of therapies, equipment,
and services that will optimize Jimmy's health and development.  We continue to consult with them for
comprehensive, world-class care.

The following is a list of the therapies and services Jimmy received in his preschool program, and now
receives in school:

OT (Occupational Therapy)                                  3x/week
PT (Physical Therapy)                                           4x/week
Speech (Speech/Oral Motor Therapy)                3x/week
Vision (Teacher of the Visually Impaired)          2x/week
Special Education                                                  5x/week
Aqua Therapy                                                          3x/week
1:1 Aide                                                                    5x/week
Adapted PE (Physical Education/Gym)              2x/week            

The most important thing we have done to boost Jimmy's ability to learn and improve developmentally,
outside of exploring the Ketogenic Diet to treat his seizures without medication, is to incorporate
Active Learning into our daily lives.  I cannot stress enough that Lilli Nielsen, the world's expert on
teaching children with multiple disabilities and visual impairments, has developed the best techniques
I have seen first-hand.  Her approach is embraced around the world (the United States is just now
catching-on), because it involves the "hands-off" approach.  Simply put, Lilli believes that children learn
through their own active exploration.  By moving the child's hand toward an object, the movement is
initiated from your brain!  The only thing the child will remember about the experience is that the adult
was holding onto their hand.  Lilli teaches ways to use common household objects to create an Active
Learning Environment, which promotes the child's own independent movement and exploration.  Parents
and caretakers need only set up the optimal environment for the child to learn, based on Lilli's
techniques.  The results are amazing.  Please visit "Jimmy's Updates" for more information!

3/07: Despite our constant efforts, Jimmy was recently diagnosed with Osteoporosis.  We will continue to
research alternative treatments to increase his bone density; Weight bearing is also critical in increasing
bone density.  Osteoporosis is common in children with severe cerebral palsy, unfortunately.


Glossary:

Hydrocephalus - an accumulation of serous fluid within the cranium, esp. in infancy, due to obstruction of
the movement of cerebrospinal fluid, often causing great enlargement of the head; water on the brain.

Microcephaly - an abnormally small head and underdeveloped brain.

Colpocephaly - a disorder in which there is an abnormal enlargement of the occipital horns - the
posterior or rear portion of the lateral ventricles (cavities or chambers) of the brain. This enlargement
occurs when there is an underdevelopment or lack of thickening of the white matter in the posterior
cerebrum.

Agenesis of the Corpus Callosum - a rare disorder, characterized by a partial or complete absence
[agenesis] of the corpus callosum, which connects the two cerebral hemispheres.

Chorioretinitis - inflammation of the choroid layer behind the retina.

Macular Colobomas - absence of closure of the primary ocular fissure.

Cerebral Palsy - a group of motor problems and physical disorders that result from a brain injury or
abnormal brain development that may occur during fetal growth, at the time of birth, or within the first 2 or
3 years of a child's life.

Spastic Quadriplegia - a person with spastic cerebral palsy develops tight muscles in some parts of the
body that are unable to relax.  Affected joints become stiff and difficult to move.  Usually, a person has
problems controlling movements, poor coordination and balance, and difficulty talking and eating.

Hyperreflexia - A condition in which the deep tendon reflexes are exaggerated.

Lennox Gastaut Seizure Disorder - the most difficult-to-treat form of childhood-onset epilepsy that most
often appears between the second and sixth year of life, and is characterized by frequent seizures and
different seizure types; it is often accompanied by mental retardation and behavioral problems.

Asymmetric Aortic Valve - characterized by a disproportionate valve between the left ventricle and the
aorta. This valve prevents the blood from flowing back into the ventricle from the aorta.

Nerve Deafness - hearing loss due to failure of the auditory nerve.

Osteoporosis - a disorder in which the bones become increasingly porous, brittle, and subject to
fracture, due to loss of calcium and other mineral components, sometimes resulting in pain, decreased
height, and skeletal deformities.

Ventriculo-Peritoneal Shunt - a surgery performed to relieve intracranial (inside the skull) pressure
caused by hydrocephalus (water on the brain). The fluid is shunted - via a catheter - from the ventricles of
the brain into the abdominal cavity, or in rare instances, into the pleural space in the chest.
Jimmy's Story...
Links:

LCMV Pregnancy Info Sheet
LCMV on the CDC Website
Dr. Barton's LCMV Warning
Dr. Barton's Original Full Article
Kennedy Krieger Institute
Lilli Nielsen's Active Learning

Contact Info:

Sue Ellen Holmes (Jimmy's Mom!)
sholmes1@twcny.rr.com