Neuroblastoma and Paraneoplastic Syndrome
 

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04-08-09 09:16 PM
haveyroo
Neuroblastoma and Paraneoplastic Syndrome
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My daughter was diagnosed with Neuroblastoma Cancer and Paraneoplastic Syndrome.  I am wondering if anyone else has the additional Paraneoplastic Syndrome symptoms?  We have also been diagnosed with ROHHAD Syndrome as well, adding to our other diagnosis. 

 

Thank you

04-08-09 09:36 PM
sssuzie1
Re: Neuroblastoma and Paraneoplastic Syndrome
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My father-in-law (I know, a far cry from a child, but this was how I learned of Paraneoplastic Syndrome at first) was diagnosed with this syndrome (he has lung cancer).  I found basic information, and suggested treatments available (again, very basic information) on the NIH website:  http://www.ninds.nih.gov/disorders/paraneoplastic/paraneoplastic.htm.  I wish you and your family all the best and hope your daughter recovers quickly.  I had never heard of Neuroblastoma until today, when a co-worker's 3 year old son was diagnosed (on April 3) with this cancer.  It's a sobering thing to learn, and even as "removed" (i.e., not a family member) as I am from it, I feel "beaten down" today - I can't even begin to know how his parents must feel right now.

 My heart & prayers go out to all the parents out there fighting alongside their children in this battle.

L

03-30-10 10:10 PM
Liz Mauro
Re: Neuroblastoma and Paraneoplastic Syndrome
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 Hi,

Was your daughter dianosed with Opsoclonus-Myoclonus Syndrome?