Big day today



Best of luck mate and I’m sure it will be the outcome you are wishing for .
Only thing that scares me in life is when my boys get poorly. I’m a right fanny even when they get a cold so can’t imagine what you are going thru.
 
Best of luck to your son and your family. For what it is worth my brother in law has suffered from a rare immunity blood disorder such as your son's since his early adolescence and he is now in his late 50's. During the 40 years that I have known him the diagnosis and the name of the disorder that he suffers from has changed several times as the understanding of the condition and medical research has developed. There was however never any mention of neuroblastoma in his case and it was always thought that the origin of his condition had been viral. His age seems to have born that out. I sincerely hope that it can also be discounted in your lad's case. Very best wishes.
 
oROSSo said:
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.
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Best of luck to the lad, Ross
 

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