Wow. Such a wonderful response! This is so encouraging and welcoming. I'm so sorry that others have been through this too, but it's so comforting to me - and I'm sure others for the support. Very much appreciated. I knew I could count on this board!
Last night after I wrote this message and was researching online, I came across the diagnosis of cortical visual impairment:
http://www.afb.org/info/living-with...-injury-and-neurological-vision-loss/123http://www.aph.org/cvi/define.htmlI had never heard of this diagnosis. NOBODY has ever mentioned this diagnosis as a possibility to us - NEVER. And I've seen some pretty top people, including top US/world neurosurgeons.
Now, ds was born with severe plagiocephaly (both flattening and facial asymmetry - his head looked like a parallelogram...ugh, math) and torticollis (and etc. - hypotonia, severe sensory, dyspraxia, global developmental ideas - get the idea?). He wore two Doc Band helmets as a baby for the plagio; he had neck surgery for the tort at 18 months. Last August, he started neurofeedback for ADHD-like symptoms; we were told that the plagio/tort was, in fact, a tbi and neck injury (traumatic brain injury and neck injury).
Today, I phoned the department that treats cortical visual impairments at Children's Hospital in Boston. What an interesting conversation that was. I said that we keep getting blown off from neurosurgeons who dismiss the plagio being a tbi. I said that we keep getting bounced around from behavioral optometrists and ophthalmologists and that the behavioral optometrists don't seem to have a clue about how to pursue treating brain-based vision except with vision therapy.
So I'm just really relieved that I 1) found someone, 2) found perhaps a department who can help at CH, 3) got an appointment, and 4) I can pepper the doctor with questions!
Neurofeedback is supposed to help with visual deficits. And I'm sure it does in many cases. However, with my son's case and our rapidly dwindling financial resources, I'm eager for a second opinion or someone, somewhere to help and provide more guidance.
Ds was in neurofeedback from August to May and then took a break until November. At that point, ds was head tilting again, which I assumed was due to the torticollis being both visual/ neurologically-based and since ds was becoming more dry at night than wet and had finished pre-algebra/algebra using college textbooks within 2.5 months (which would do my head in too). He went back into water therapy to keep his head midline and body aligned too. So yes, he had regressed due to a number of issues (cognitive gains, growth spurt, nighttime pottying, etc.). I've been told that we might be facing this head tilting and other issues on/off. I've also been advised to stay on top of it up to puberty so ds's head/body stays in alignment.
When we saw Dr. Lovecky in June 2012, she asked if I had considered medication for the ADHD-like symptoms. I immediately asked about neurofeedback based on this board! We never discussed medications again. She believed that neurofeedback might address ds's and that he might need vt again after doing some nft - which is why we took ds to a behavioral optometrist a month ago.
Wish this journey was a tad easier! Jeez.
