some definitions of ian's diagnoses: 1. distal arthrogryposis: describes congenital joint contractures in two or more areas of the body. Children born with one or more joint contractures have abnormal fibrosis of the muscle tissue causing muscle shortening, and therefore are unable to do passive extension and flexion in the affected joint or joints. (the distal part means it's in his feet). 2. severe functional communication delay: this refers to receptive and expressive communication. his understanding, cognitive ability to process...he is behind. we have seen huge progress since the spring, but even still he is considered severely behind. (as of july, 2014). 3. selective mutism: i'm not as concerned about this. they attribute this to some anxiety on his part. this is hwere some child psychologists thought he might have some autism; for his inability to interact and communicate (eye contact) - depending on the day, and who he is with, he presents as 2 different kids. but it has officially been ruled out, that he is not autistic. he exhibits some behaviour that is similar to some autistic behaviour, but he is not autistic. 4. regulation disorder of sensory processing - this is the big one to me. the sensory side of things - he's all over with this one. " It represents a definite entity that requires a distinct behavioral pattern for diagnosis. The diagnosis is not related to a child's intelligence but rather to a pattern of responses and behaviors observed over time. Sensory, motor (gross and fine motor), physiological (sleep, eating and elimination), behavioral processing and organizational (attention and affect, and overall behavior) responses are all considered. (Sleeping and eating difficulties can be considered symptoms of RDSP or as separate problems.) The disorders affect daily adaptation, interactions and relationships." there is no precise definition of this one....it has to do with regulatory...following is an extract to a book that tries to describe this disorder: http://www.jkp.com/catalogue/book/9781843105213/extract/ we have ordered a bunch of books referred to us by dr. golden. 5. dyspraxia: this is the 2nd biggest to me. (also known as developmental co-ordination disorder). Ian doesn't have the natural reflexes that most of us are born with, or are able to process. When he falls, his hands don't go out to protect him. the "impairment of the ability to perform coordinated movements." The Dyspraxia Foundation lists developmental co-ordination disorder, perceptuo-motor dysfunction, and motor learning difficulties as other names used for dyspraxia. 6. atypical febrile seizures: you all know he has seizures. it seems to happen once every 3 months. (1st noticed last September and happened as recently as august). 7. chronic sleep disorder: well, everyone knows this too. :) this isn't a complete picture - but it gives a bit of an idea :) if anybody was able to read through all this to this point, thanks!

ian's 2014 diagnosis

hello. information overload. not sure where to start. between casa (a child psychiatrist-dr. hapchyn), and the glenrose (a physiatrist - dr. watt (specializes in muscles) and a dr. golden who specializes in neurodevelopmental stuff and the feeding and swallowing team and the physical medicine team (both which include ian's orthopedic surgeon, another child psychiatrist, speech pathologist, occupational therapist, physiotherapist, dietician and social worker) and the stollery (pediatrician, neurologist, orthopedic surgeon, and gastroenterologist)...we've had some big appointments...:) it feels like such a network of people...and maybe its coming together. ians' unusual behaviour is not from seizures. autism has officially been ruled out. but now he has a whole host of complicated regulatory, sensory and muscle issues. that is his diagnosis in a nutshell. we have our work cut out for us. and a whole lot of research to do, and I've got to own his diagnosis. that's what I was told by dr. golden yesterday - the big wig who finally put stuff down to paper. so. i'm to tired and blah to even know where to start, so I included the paperwork for you to browse at your leisure. it's been a while since I posted :) hope all is well! we had a pretty good summer. thankful for everything and everyone! and hopefully i'll post picts soon....love you all!