Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 As a parent whom has been on this board since 2003...when there was maybe 100 of us....I would like to remind everyone that there has been no LONG TERM RESEARCH (by long term I mean following a patient from childhood till old age)....there are studies in progress but it will be YEARS before the long term is known. There are many degrees of severity from which our children are affected by this disease. As far as treatments that are successful...... this varies from child to child...yes many whom use steroids to control fevers will shorten the time between cycles....some children may stop fevering(YIPPEE)...while others might have a T & A and stop...while others will have T & A and maybe get some time between cycles...or some may not get any relief....others will need to move thru " the ranks " of medications to help their child. Some of us will end up at NIH as patients for the long term(we have been going since Jan03 every 3-4 months). Some of these children may be found to have a known genetic link...while others may show 'abnormalities' in his/her lab work but have no answer as to WHY and WHAT IS IT??? Fran started this board many years ago. It has been a wonderful support and link to information for many many families. Yes many families are joining at a quick and alarming rate...why?? is this due to the increase of talk and publishing's...I would think so..more doc's both ped's and specialists are reading and hearing about at conferences and in medical publications. I must say that the increase in DX is alarming because many of the posts I have read the children have not been cycling for very long....which is great if the child truly has because so many children have gone years without DX.... YIKES I have rambled on haven't I....I guess my point in all this is read the files section and ? your doc's you are your childs only advocates in the world...do not be afraid to ? If a medical professional makes you uncomfortable when you ask ?'s then you really should find someone that's makes you feel OK .... as parents we are in 'the trenches' with our child listen to your gut! OK that's enough from me! mom to 18 and Breana 8 Quote Link to comment Share on other sites More sharing options...
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