Cameron Toone
Age: 3
Birthdate: July 2, 2008
Diagnosis: Periventricular Nodular Heterotopia
Brief Description: Periventricular heterotopia is a condition in which nerve cells (neurons) do not migrate properly during the early development of the fetal brain, from about the 6th week to the 24th week of pregnancy. Heterotopia means "out of place." In normal brain development, neurons form in the periventricular region, located around fluid-filled cavities (ventricles) near the center of the brain. The neurons then migrate outward to form the exterior of the brain (cerebral cortex) in six onion-like layers. In periventricular heterotopia, some neurons fail to migrate to their proper position and form clumps around the ventricles.
Affected individuals usually have normal intelligence, although some have mild intellectual disability. Difficulty with reading and spelling (dyslexia) has been reported in some people with periventricular heterotopia. Less commonly, individuals with periventricular heterotopia may have more severe brain malformations, small head size (microcephaly), adevelopmental delays, recurrent infections, blood vessel abnormalities, or other problems. Periventricular heterotopia may also occur in association with other conditions such as Ehlers-Danlos syndrome, which results in extremely flexible joints, skin that stretches easily, and fragile blood vessels.
Web-sites with accurate information
Typical findings are:
- epilepsy
- developmental delay
- psychiatric disorder or conduct disorder or learning disability
- heart diseases (valvular defects, patent ductus arteriosus)
- vascular diseases (aneurysm, stenosis and stroke)
- connective tissue weakness
- muscle weakness
- coagulopathy
- problems with motility of stomach and intestine (constipation, vomiting)
- hyperflexible joints und increased skin elasticity
- problems with nutrition
- lung diseases
- recurrent infections
- reduced intelligence (often the intelligence is normal
Cameron’s symptoms:
-Over-all low muscle tone Knocked knee’d, flat feet, over-all weakness, low energy
-Developmental Delays on all milestones. Especially late with talking still struggling with it and not caught up at all. Cameron is in weekly speech therapy and attends the special needs preschool 2x a week. Speech Therapist notes a drastic decline in Aug. 2011 to present date in energy, labored breathing, slurring words, and overall performance.
-“Clumsy” Cameron still falls all the time while walking. Ability looks a lot like a 1 year old learning to walk for the first couple months. Lacks a moderate amount of balance and body awareness.
-Labored breathing especially when trying to focus on speaking and participating in activities.
-Extreme fatigue. Falls asleep all the time sleeping hours at a time during the day in addition to 11-12 hours every night. Increased in the last couple of months. Tires quickly and easily. Lays down during ST and regular play as often as possible, usually after a couple of minutes of sitting.
-Preschool teachers have observed a desire to participate but he easily tires and can’t continue in activity.
-Low motility of bowels (constipation) sensitive stomach (gets diarrhea after drinking fruit juice)
-Unexplained rashes all over body that come and go. Extreme eczema. Unknown allergies.
-Extreme sensitivity to loud noises (fireworks, even movies or plays) intense crying and covering his ears. Sensitive even when it’s not extremely loud things.
-unusually small ear canals
-deep set eyes, protruding forehead
-hyperextended joints
-Low-tone in mouth. Tongue forward motion from birth, unable to nurse or suck correctly. Still drools most of the time. Struggles to clear passageways when congested.
