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What is ADEM, Acute Disseminating Encephalomyelitis?Article posted on Friday, July, 2nd, 2010 at 11:10 am
Many of you have asked exactly what is ADEM or Acute Disseminating Encephalomyelitis? So here goes…
Often referred to as ADEM, Acute Disseminating Encephalomyelitis essentially means you have inflammation in the brain that is attacking and destroying tissue. (Imagine a litter of kittens playing with a basket of yarn. The kittens are the inflammation and the Yarn is the brain.)
ADEM is a Neuroimmunologic Disorder. It is a rare condition that occurs in approximately… 4 out of every 1 million children. While ADEM can occur in adults it is more prevalent in children specifically between the ages of 5 and 8 and is often reported as having a prevalence in males versus females.
ADEM is in the same “category” as other more more recognizable conditions like Multiple Sclerosis, Meningitis, or Encephalitis. In fact, sometimes the first presentation of symptoms is misdiagnosed as ADEM – and is really the first episode of Multiple Sclerosis. While we are not sure exactly why ADEM occurs it is reported that approx 5% of cases were preceded by a vaccination and approx 93% of cases were preceded by some sort of viral infection. (Neely’s ADEM was preceded by a viral infection.)
Symptoms (which vary from patient to patient) can include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include monoparesis (paralysis of a single limb) or hemiplegia (paralysis on one side of the body).
Neely had almost all of the above symptoms. At the time, before we knew what she had, we described her symptoms as lethargy, clinching hands, dialated pupils, loss of ability to talk, walk, and move limbs. These are the symptoms that we described to her pediatrician (at the time), Christie Pediatric Group. Although the symptoms didn’t appear all at once, there was a fairly rapid progression over a period of 12 days.
You can read more about our experience during those 12 days through “Actual Journal Entries from Neely’s Mom.”
We hope you will see the importance of really knowing your doctor and understanding how to take responsibility for your health care.
Information for this post came from our experience and from Myelitis.org. Dr. Benjamin M Gregory, MD,MHS presentation on Neuroimmunologic Disorders.