super noodles
Winger
Fantastic, that must be a huge relief! Hope he gets better soon then whatever it turns out to be.
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Cancer free thank god. Now we can worry about his actual condition and start treatment on Friday
Great news. Hope everything else is okay from here on in.Cancer free thank god. Now we can worry about his actual condition and start treatment on Friday
Great news mate.Cancer free thank god. Now we can worry about his actual condition and start treatment on Friday
Praying for your little one, pal.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.
Awesome news. I will continue to pray for your little one. And for you and your family as well.Cancer free thank god. Now we can worry about his actual condition and start treatment on Friday
Good luck for you and your son mate.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.
Good luck to you and yours. Go knack it.Thanks everyone, appreciate the well wishes. Now to kick OMS’s arse