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Hi All,
I am certain you all are well aware that my two year in currently at Children’s Hospital in Seattle for an absolute mystery disease that we could not quite crack the code on. To catch you up, here is Michael’s story:
Michael was sick about 2 weeks ago with an upper respiratory infection and was given medication, after a few days he wasn’t showing any signs of improvement, but rather sleeping about 15 hours a day, so I took him back to the doctor. From there they did a chest xray and discovered what they thought was pneumonia and began treating for pneumonia. A day later Michael’s sleeping went from 15 hours/ day to 20-22 hours per day. On Thursday, he could hardly walk and was pretty miserable, but still was able to spend the day with his dad. He complained of sharp tummy pains, so we called the pediatrician and they suggested we go to the walk in because they were booked solid. Upon meeting the doctor at the walk in, after a brief belly exam, Michael was sent directly to the emergency room in fear that he may have appendicitis. After 4 hours, we finally were able to get an ultrasound to discover that his bladder was completely full and he was not capable of emptying it himself, so the medical staff decided to put a catheter in. Do to his pain, they attempted a catheter twice and were unsuccessful, so they decided to sedate him and were able to get the catheter in and empty his bladder. He was sent in for a CT scan and at that point, everything came back normal. We were admitted into Central for observation and come morning, his primary pediatrician couldn’t crack the code so we were immediately transported to Children’s via Ambulance. Upon arrival, Michael had more blood draws and a new IV put in to begin more testing. We met with neurology, as this was starting to look like a neurological disorder. He was then sedated completely and received a spinal tap and an MRI. The MRI exposed that he had several lesions on his spinal cord as well as his brain.
The Diagnosis:
A diagnosis of ADEM was made at 4 am Saturday. With ADEM, Michael’s immune system basically attacked itself making him extremely weak, unable to walk, use of less words, and no interest in food or drink. To treat this auto immune disease, we have just had our first dose of high dose steroids and he is starting to show improvement. With this disease, we ask that anyone with any slight cold or illnesses to please avoid contact, because his immune system will be a little compromised to allow the steroids to reduce inflation and treat him. He’s an absolute fighter and we cannot wait to come home to friends and family.
ADEM: Acute disseminated encephalomyelitis
Acute disseminated encephalomyelitis is an immune-mediated inflammatory and demyelinating disorder of the central nervous system, commonly preceded by an infection. It principally involves the white matter tracts of the cerebral hemispheres, brainstem, optic nerves, and spinal cord. Acute disseminated encephalomyelitis mainly affects children. Clinically, patients present with multifocal neurologic abnormalities reflecting the widespread involvement in central nervous system. Cerebrospinal fluid may be normal or may show a mild pleocytosis with or without elevated protein levels. Magnetic resonance image (MRI) shows multiple demyelinating lesions. The diagnosis of acute disseminated encephalomyelitis requires both multifocal involvement and encephalopathy by consensus criteria. Acute disseminated encephalomyelitis typically has a monophasic course with a favorable prognosis. Multiphasic forms have been reported, resulting in diagnostic difficulties in distinguishing these cases from multiple sclerosis. In addition, many inflammatory disorders may have a similar presentation with frequent occurrence of encephalopathy and should be considered in the differential diagnosis of acute disseminated encephalomyelitis.
Source: Alper, G. Accute Disseminated Encephalomyelitis. Journal of Child Neurology. Vol. 27(11). 2012
Update on Behavior:
Michael has perked up significantly since his first infusion of high dose steroids. He is quite sassy, as a result of steroids and has also developed an appetite. He was able to eat applesauce, crackers, and jello. We don’t quite have the go ahead for liquids, because we are working on swallowing still. For now, he is resting easy watching movies and given snuggles. We should only have to stay for the week, so extra prayers for coming home soon would be so appreciated.
