When my son was in the NICU and he got the ultrasound of his brain that most preemies get; We were told that the results were normal. No brain bleeds.
When he was 2 1/2 it was recommended by the Infant Follow-up clinic at Children's Hospital (a clinic that follows preemies and how they develop) that we get a neurology assessment. We saw neurology and they recommended an MRI. At the time, my son, had been recently decannulated and an MRI that would require sedation just didn't appeal to me and psychologically I personally just wasn't ready for "one more thing" to.
Well 10 years fast forward, trach free, g-tube free, I am finally ready for the answers to his struggles and delays that are constantly on my mind.
We had our evaluation about a week ago. Thankfully the MRI my son had last April for Endocrinology was useful to the neurologist so no additional tests were needed.
Immediately the Neurologist said "well look here, he's got scarring in sensitive parts of the brain that is causing his delays"
In neurological terms: "MRI shows patch T2 signal abnormalities in the left periatrial white matter, probably representing periventricular leukomalacia and gliosis, consistent with his early history. Thus we see that there is indeed a neuroanatomic basis for these issues".
Ok, brain damage? I can literally make myself crazy thinking about when, where, or even how this happened, but I know its basically common sense given his complex medical history. Still it doesn't make it any easier.
On the other hand his delays, motor planning and sensory issues are now all explained. But what does this mean long term? I have learned from past experience that the lungs grow new tissue and the scar tissue becomes non-existent but what about the brain?
Whats does this mean developmentally? The diagnosis remains the same; neurodevelopmental disorder, secondary to complex medical history, ADHD inattentive type, Sensory processing disorder.
Where do we go from here?
All I can think to do right now increase his therapies; We have all heard that the brain is always transforming itself, which is why people recover from strokes etc....so now along with PT, OT, SP he has in school, he will get private OT and now am looking into a therapeutic riding program.
Ok, we have a plan...for now. Followup with Neurologist? Six months.