some of you might know/remember my son was diagnosed with cerebellitis back in December. Well it turns out that was a misdiagnosis and what he actually does have is an incredibly rare auto immune disease called opsoclonus myoclonus syndrome, which can effect as little as 1 in 10 million children.
OMS can be triggered by a viral infection or a neuroblastoma, depending which doctor you listen to it can be as high as 80% of the time it’s caused by a neuroblastoma but our doctor puts it more like a 50/50 chance. We’ve spent the last week in the RVI and finally managed to get MRI scans done yesterday with a view to potentially getting back the results today to tell us if he has a NB.
Obviously we’re hoping there’s no signs of NB and putthis down to a post viral cause and begin the long and unsure road to recovery with steroid treatment, with no real guarantees this condition will ever be fixed. It’s so rare and there’s so little information and research about it, the doctors are fighting in the dark against it. Just glad our doctor has seen and dealt with it before.
Just wanted to vent a bit before what seems to be the biggest day in my life so far.
OMS can be triggered by a viral infection or a neuroblastoma, depending which doctor you listen to it can be as high as 80% of the time it’s caused by a neuroblastoma but our doctor puts it more like a 50/50 chance. We’ve spent the last week in the RVI and finally managed to get MRI scans done yesterday with a view to potentially getting back the results today to tell us if he has a NB.
Obviously we’re hoping there’s no signs of NB and putthis down to a post viral cause and begin the long and unsure road to recovery with steroid treatment, with no real guarantees this condition will ever be fixed. It’s so rare and there’s so little information and research about it, the doctors are fighting in the dark against it. Just glad our doctor has seen and dealt with it before.
Just wanted to vent a bit before what seems to be the biggest day in my life so far.
