Conor at the Intensive Care Unit of the Doctor Everett Chalmers
Hospital, Fredericton, April 2013 when his life was at serious risk
from an adverse reaction, Rhabdomyolisis, to his seizure meds.
April, Autism Awareness Month has come and gone and to my knowledge little to no real awareness has yet been raised about the serious risks faced by those with autism spectrum disorder particularly those with intellectual disability and in much higher rates than among the general population ... seizures and the medications to treat seizures. 4 years ago as I was reminded by a Facebook reminder notice we almost lost our autistic son Conor to an adverse reaction ( a condition which was diagnosed by the treating hospital ICU team as Rhabdomyolisis) to his seizure medication. Conor's conidtion fits the model described in the following BMJ article. Severely autistic, combined with learning difficulties which also fits him with the very high 20-40% of persons with autism who also suffer fro epilepsy. The harsh reality staring Conor and all of us who love him is that persons in that group severe autism, learning difficulties and epilepsy die as much as 30 years sooner. Not the type of autism awareness you generally hear about in the blue light autism is beautiful blend of autism "awareness".
People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner. Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women.
People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London
352 (Mar 17, 2016)
352 (Mar 17, 2016)
"Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!
http://autisminnb.blogspot.ca/…/conor-is-safe-now-but-we-al… In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity. Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012. Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed. Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU. Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be. Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.
To everyone involved with protecting and saving our buddy Conor his Mom and Day say THANK YOU VERY MUCH, THANK YOU!
PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy"
We were fortunate to have access to excellent medical care and attention from the ICU and Emergency teams, their supporting staff and our family doctor, To all of them I say once again THANK YOU FOR SAVING OUR SON's LIFE.
To everyone involved with "Autism Awareness" events though I say start teaching the public about all aspects of autism disorders including some of the most frightening realities.
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