Has Anyone Attended Raindance Canada?

Who are some great pediatric specialists and neurologists who may be able to help a child with an unknown degenerative brain disease?

• Source: https://www.facebook.com/SahibNeedsYourHelp It's not my story, I am just trying to help this adorable little kid. Hi Everyone I am about to share a very tragic and devastating story regarding our younger son Sahib. He was born August 10, 2006. He was a normal and healthy baby boy who hit all his developmental milestones. He was a smart, bright, active and healthy kid. At age 3 and 4 he attended a Montessori Preschool and was already reading, writing and doing three digit simple addition and subtraction. In kindergarten he was reading at grade 1 level. He was also very athletic. All of a sudden, things changed in November 2012, and Sahib has not been himself since then. Our world has forever changed. Our beloved Sahib as we once knew him is now slipping away. Sahib was only 6 years old and in grade 1 when we started to notice a lot of anxiety at home and school. He had all the classic signs and symptoms. Sahib started spacing out in school, unable to focus and concentrate or pay attention. He would go to the bathroom at school and not be able to find his way back to class. He was able to do this before. Staff and peers would find him starring down hallways and had to redirect him back to class. His energy level dropped, he was weak, tired and lethargic all the time. Since then he has been unable to understand simple tasks or follow simple directions. Sahib has lost his fine motor skills. He has forgotten how to hold a pencil, unable to write, color or cut properly. He has forgotten his physical skills learned and is unable to jump, skip or climb anymore. Sometimes he used to walk with a limp, his balance and coordination are also very poor. He has an unsteady gait, therefore, he falls all the time. Sahib was a very athletic kid, but now he can no longer play the piano, ride a bike, ice skate, swim, play soccer or hockey. Sahib has lost all of these physical skills he had mastered before. He can no longer read at his level, his speech is poor and he has great difficulty speaking and expressing himself. It's so sad because there have been times when I know he knows the answer but it's as though his thoughts are trapped in his head and he just can't get them out. When this happens he will hit himself on his head repeatedly because he gets so frustrated with himself and this is heartbreaking for us to watch. His vision has been affected and he had temporarily lost vision in his left eye a couple of times. Now he focuses using his peripheral vision most of the time. He is also losing control of his bladder. Sahib has even forgotten about his anaphylactic allergies to eggs and nuts which has made him a risk to himself. The worst day of our lives was on June 3, 2013 when we got his brain MRI results. We were told our precious little boy has a degenerative brain disease, a parent’s worst nightmare!! Since then Sahib has been tested extensively at BC Children's Hospital and we still don't have a diagnosis! They think it could be a rare brain disease but that's not good enough for us. The unknown is killing us. As a parent our job is to protect and keep our children safe. The thought of it torments and haunts us because without a diagnosis we can't help him...treat him...nor save him:( Our son has deteriorated tremendously over the last year and regressed into what appears like a 3 year old boy. Sahib is now 7 years old and has a full time education assistant with him at school and requires 24 hr supervision at all times. Our once independent son now requires help with everything. The reason behind our painful story regarding our son's life is to be his advocate and help find a diagnosis so we know which kind of brain disease we are dealing with and start treatment immediately to help restore his quality of life. Those of you who have children can empathize with us. Can you imagine just waking up one morning and your child can't talk, read, write or walk. Can't do any of the things they were once able to do. We are pleading to all our family and friends to reach out to all your connections inside and outside of Canada for any Doctors they may know. We are mostly in need for Pediatric Specialists esp. Neurologists or anyone who specializes in the brain. We have our sons health records and MRI cd's. This is why we are in need of personal connections because we need them to review our sons records so we are not wasting our time and repeating the same unnecessary tests that he has already been through. Our son does not have that luxury and time is of essence. After looking at his file if there is anything new to offer, we are willing to go anywhere and do everything for our son. So please help us reach out to anyone you can. We are clearly desperate and at the mercy of anyone who can help us save our son. Thank you in advance. Sincerely, Bal and Colly

• Answer:

  I'm so sorry for this boy, and I do understand how much the parents, the whole family, desperately wants to know if anything can be done to treat him and make him better.  Such a promising boy at one time! Sadly, if the brain MRI has shown degeneration, that being the cause of his debilitating disease, whatever name they can put on the underlying disease it can't be turned back, you can't replace a severely damaged brain to cure a patient. I have seen a lively young girl, daughter of a friend, go through the same at around 11 yo, she was evaluated in a prime academic child neurology center in Amsterdam, they too couldn't find a name for her disease, and couldn't do anything to stop her debilitating disease, she died two years later in a nursing home.  It had a devastating effect on her family ending in a divorce and a younger sister feeling always coming second because of all the attention this sick girl needed. Wishing everybody concerned all the strength needed, and all the best!