Please Help Me Heal Jazir's Brain Injury
NOTE: The PayPal account associated with this page is in my mother (Jazir's Nanny), Margaret Barton's name.
My name is Lara Marjerrison. I live in Toronto, Ontario, CANADA. I am the mother of a darling seven year old boy, named Jazir, who suffered a TMI (traumatic brain injury) at age 2.5 years. Initially he presented with Epilepsy only, which we have treated and successfully controlled. Recently, however, his revised and more accurate diagnosis of CVI (Cortical Visual Impairment) and Visual Agnosia has continued to mystify his Neurologist in that it continues to worsen and debilitate him further.
My son has regressed to the point that he is now legally blind. His eyes are completely healthy and functional but his brain does not process or recognize what he is looking at. He has lost all ability to see faces, including mine and his dads and relies wholly on the sound of our voices to identify us. He can no longer identify every day objects, has lost his ability to differentiate colours and now struggles to dress himself because he cannot recognize different articles of clothing nor determine what their function is. He is disoriented and gets lost or confused even at the simplest task, such as getting himself from his bedroom to his bathroom. He cannot be out in the world without holding the hand of an adult, it's not safe for him. He doesn't recognize where curbs become roads, where edges drop off. We must be on alert for his safety at all times. He is now beginning to struggle to eat properly. His condition is deteriorating rapidly and he is losing more and more of his independence. Every day offers a new challenge as we strive to adapt. He presents much like a little boy trapped inside an Alzheimer's riddled mind. He becomes more reclusive, frustrated and anxious as time passes.
I am very happy to report that this past Thursday's EEG showed that much of the near-constant seizure activity in his brain has subsided as a result of the change in medication and we are getting much closer to seeing a clear EEG. Evidence of this is showing up in him as his language and comprehension return. He is speaking in full sentences again, able to carry on conversations and recalling events both recent and past. He is putting information back into context, requesting libraries of music and stories that he once loved and his delightful personality is returning. He even looks like himself again!
Our next EEG will be an overnight audio/video EEG at Sick Kids and we hope by then to see a clear image and normal brain activity. Now that we have a baseline again from which to begin, we will implement the program that I was taught in Philly. We will need to re-teach his brain how to see, sort, organize, recognize and recall the details of his environment and the people in it. We will re-teach him his alphabet, numbers, colours, shapes, etc., as we would an infant starting from scratch. Given his innate intelligence, I suspect there will be aspects of this learning process that will frustrate him, but I believe with diligence we will be able to achieve results that allow him to function at his age level and possibly beyond.
I look forward to posting more and better news as we continue down this path toward total healing.
Thank you for your continued love and support.
We have begun a new anti-convulsant medicine (Clobazam) and may have to add one or two more as we go (most likely a steroid), depending upon whether or not the Clobazam is effective, how effective it is or is not and how quickly, etc. The work that was done in Philadelphia is still completely relevant and we will continue to pursue the intensive home therapy program that was developed out of my visit there.
Jazir and I will return to Philly together in a few months as planned so that the staff there may continue to add their professional input and extensive experience to his ongoing and seemingly ever-changing case.
Next Thursday he will undergo another EEG (the most recent of many) to determine the extent and intensity of electrical activity still present in his brain.
He has lost a great deal of his language and vocabulary in recent weeks and tends to ask the same few questions hundreds of times per day. Still, we hope this course of action and treatment will prove effective.
Every one of us responsible for his care and well-being refuses to be anything but optimistic about future outcomes. We remain grateful for your care, concern and community support. Your donations have assisted us immensely and are gratefully and graciously appreciated. We still have a long, long journey ahead of us before we return him to 100% wellness.
Love and blessings to each and every one of you..