Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Tuesday, December 18, 2012

Autism, Aspergers & ADHD (ADD)

Today I want to share an e-mail I received from a friend of mine who also has a son in my boy's Cottage School Class. Her son has Autism, just like the beloved friends of my boys, Dylan and Ryan. 
We also have another friend who has a form of Aspergers. We know of two Adult Men in our life that were diagnosed with ADHD, just like Alexander was. 

Here is what has been on many of our minds since the news broke that Adam Lanza might had Autism, Aspergers or ADHD:


"Hi all,
Most of you who know me know that I would not normally be one to send out a mass e-mail like this, but I have to speak up.
Let me just say first of all that I am deeply stricken with grief over the deaths of those 20 little children and 7 adults in Connecticut, as I'm sure are all of you. I cannot even begin to imagine the pain that all of their families are experiencing. I pray for them and mourn with them as they walk through this horrible tragedy.
We all look for answers. We all want to understand how or why this could happen.
But something is spiraling out of control amidst the social media that is prompting me to send this e-mail. Adam Lanza is supposed to have been diagnosed with Asperger's, and many people are blaming this event on this diagnosis. The disorder is being grossly misrepresented and misunderstood. There seems to be a trend right now towards believing that people with ASD are often violent and sociopathic, lacking empathy. As the parent of a child with Autism Spectrum Disorder, I must speak out against this.
The New York Times posted a fair, informative article about ASD and how it is unlikely that this disorder caused the choices made by Adam Lanza. I have included a link to the full article. I would be so grateful if you would read it, but I completely understand everyone's busy schedules. Here's an excerpt that I feel is imperative for people to see:
"Let me clear up a few misconceptions. For one thing, Asperger’s and autism are not forms of mental illness; they are neurodevelopmental disorders or disabilities. Autism is a lifelong condition that manifests before the age of 3; most mental illnesses do not appear until the teen or young adult years. Medications rarely work to curb the symptoms of autism, but they can be indispensable in treating mental illness like obsessive-compulsive disorder, schizophrenia and bipolar disorder.Underlying much of this misreporting is the pernicious and outdated stereotype that people with autism lack empathy. Children with autism may have trouble understanding the motivations and nonverbal cues of others, be socially naïve and have difficulty expressing their emotions in words, but they are typically more truthful and less manipulative than neurotypical children and are often people of great integrity. They can also have a strong desire to connect with others and they can be intensely empathetic — they just attempt those connections and express that empathy in unconventional ways..."
Here is the full article:
http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html
Please feel free to pass this along or post it on your FB pages if you feel compelled to do so.
We may or may not discover what would motivate this 20-year-old child to carry out such a devastating act of violence. And deperately seeking this answer is paramount to helping us learn how to recognize and reach out to other individuals who may be at risk of doing something like this again. But again, as a parent of a child with ASD, I want to make sure that we are careful to understand all aspects of Adam's choices, rather than to misinterpret a disorder that may or may not have had anything to do with this event.
Thanks so much for taking the time to read this e-mail."

Hugs to all of you and Thank You to my dear friend Heather for letting me use her e-mail. Her words are by far better then mine could ever be :)

R A C A



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