hi. well my husbands best friend has a little nearly 2 year old boy.
he for the past few months has been thru copious amounts of tests, and scans, because of swollen lymph nodes in his neck.
first they thought is was cat scratch fever. but unluckily no. (did you even know this was a real thing, and not just a song?!!!...) anyway... -

it has come back, that he has a very rare disease called rosai dorfmans disease, which can affect any lymph nodes in the body. it is so rare, nobody (doctors) really know anything about it, and what to do about it. at the moment he is in san diego childrens hospital. he gets very high fevers often.

anyone ever heard of this or of it?

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tuffn...
Feb. 1, 2008 at 4:39 PM No I have not heard of this. I wish you all the best in this. I wish I had some answers for you. I truly wish I did. I will pass this post on to my friends here at Cafemom  to see if any of them know.

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tiger...
Feb. 1, 2008 at 4:49 PM Wish I could give you some info. I'll add you all to my prayer list but that's about the best I can do.

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jennb...
Feb. 1, 2008 at 4:51 PM Sorry never heard of it, but you have a great research tool at your disposal! The internet! My Aunt had a very rare tumor on her spine and she couldn't find anyone who knew about it or would attempt to treat it, so she got on line and learned a lot more about it and found a surgeon in New York, she was there within weeks and had the surgery, it was very risky but without she would have died. It was cancerous at that. So just keep trying and searching. When I have time I will try to help. I will keep the little boy in my prayers. I will book mark this so I can see how it is going and get any info I find for you to you! I wish the family the best of luck!

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foofo...
Feb. 1, 2008 at 4:52 PM Oh I'm so sorry to hear this. I have not heard of this either. It sounds very scary though.  I hope you find some answers. I just don't understand how they have a name for a disease and still not know that much about it. I hope and pray the docs do some research and find some answers for you.  Best of luck and I will keep you in my thoughts and prayers!!!

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vicki...
Feb. 1, 2008 at 4:56 PM thanks mums. i have researched this a lot on the computer, but like i say, there is very little info on the subject, every case is so different ( and apparently only 1000 cases!) if you are so kind to have a little browse, please let me know if you find anything! i will keep this post updated. - vicki

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lillpop
Feb. 1, 2008 at 4:58 PM

  I have heard of it, but I don't know about it

 My sister had a VERY rare disease ( not this one ) but she passed away.

 I think the best thing to do is get to a "teaching hospital"

  so sorry thats very sad

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JHanc968
Feb. 1, 2008 at 4:59 PM

This is what WebMD says about it:

Rosai-Dorfman disease is a rare disorder characterized by over-production (proliferation) and accumulation of a specific type of white blood cell (histiocyte) in the lymph nodes of the body (lymphadenopathy), most often those of the neck (cervical lymphadenopathy). In some cases, abnormal accumulation of histiocytes may occur in other areas of the body besides the lymph nodes (extranodal). These areas include the skin, central nervous system, kidney, and digestive tract. The symptoms and physical findings associated with Rosai-Dorfman disease vary depending upon the specific areas of the body that are affected. The exact cause of Rosai-Dorfman disease is unknown.

Resources

Histiocytosis Association of America
322 North Broadway
Pitman, NJ 08071
Tel: (856)589-6606
Fax: (856)589-6614
Tel: (800)548-2758
Email: histiocyte@aol.com
Internet: http://www.histio.org

NIH/National Heart, Lung and Blood Institute
31 Center Drive MSC 2480
Building 31A Rm 4A16
Bethesda, MD 20892-2480
Tel: (301)592-8573
Fax: (240)629-3246
Email: nhlbiinfo@rover.nhlbi.nih.gov
Internet: http://www.nhlbi.nih.gov/

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MTM
Feb. 1, 2008 at 6:06 PM

I have found these to be helpful as well.

http://www.histio.org/site/c.kiKTL4PQLvF/b.1847589/k.5BBC/Diagnosis__Treatment.htm 

http://www.histio.org/site/c.kiKTL4PQLvF/b.1847189/k.E9BE/Symptoms.htm 

http://www.histio.org/site/c.kiKTL4PQLvF/b.1764433/k.8BCD/LCH_in_Children.htm 

If you scroll down they have a contact us link as well. I hope this helps I will keep this family in my prayers.

 

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06mom
Feb. 1, 2008 at 9:13 PM I am so sorry to hear this !!  I've never heard of this before either.  I wish them the best !!!

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count...
Feb. 2, 2008 at 10:15 AM I have never heard of that disease, but I did know cat scratch fever was a real thing. My nephew was diagnosed with it and in the same hospital stay they discovered he was full blown diabetic... he was 18 months old. This little boy will be in my prayers. As well as will his family and their wonderful friends like you.

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