My experience of tragedy, trials, and triumphs!
If you're new here start by reading the "My name is Julie" post first!!!

Popular Posts

Monday, October 17, 2011



Cameron was seen by a cardiologist today. He has been extremely tired lately so the neurologist wanted to be sure he didn't have the heart condition that usually goes along with PVNH. He did great and we got fantastic news that his heart looks and is functioning normally. This is a huge relief for me. I believe he must be exhausted from his low tone and his brain is working over time right now trying to catch up with his speech. I think as he has grown and got bigger his muscles are having a hard time getting him around. I plan to put him in a tumbling class to help strengthen his muscles and the speech therapist is planning to add physical therapy to go along with the speech.
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.

Friday, October 7, 2011

Major Progress!!


Cam has made amazing progress in the last few months. After we were able to get him to say "ball in" it was only a matter of weeks before he was talking. We are all so excited. It was like his brain found a new path and Cam was able to start communicating verbally. He went from less than 20 or so words to more words than I can count in a couple of weeks. He started putting 2 and 3 words together, and now is up to even 4 word sentences. He started by being a little parrot and repeating everything he heard. Now he is able to come up with the words on his own. He is still behind, but we are thrilled with his progress. Some of his words are hard to understand. It is a guessing game most of the day trying to figure out exactly what he is saying. Cam has loved being able to talk to people. He is very friendly and polite. He say's "thanks you" to everyone constantly for anything they do for him. A few weeks ago he said out of the blue, "Mom, love you" and he always responds "love you too" when I say it to him. He is so cute. He can say all his brothers names and most of his family's names too. When he is in trouble and crying he still signs "sorry" which is absolutely adorable. He reverts back to sign often especially when I don't understand what he is saying.
Cam remains in speech therapy once a week, and has started preschool. He goes to school twice a week and rides the bus. He loves watching for the bus and yells, "the bus, the bus" when it arrives. He is doing great in school. His teachers adore him.
Cam is also potty training with great success right now. This is exciting for us both. After a lot of research I found that most kids with PVNH aren't able to potty train until age 5 or 6 and really struggle with it. I am thrilled for him and so proud of how eager he is to become a big boy.

There was an error in this gadget