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"The only thing that all of the people with APS Type 1 have in common is the will to survive" -- Pablo Ramírez

 
September 2010
 
 
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I was writing regarding Joseph's problems with oral thrush. Perhaps someone in the group has some advice based on their experiences. I just don't know where to turn for help with this. I was hoping that I could hear what others did over email or even through a phone conversation. It is really troubling me.


Joseph started with thrush when he was 9 months old and now he is almost 3 and we are still treating it every month or at least every two months. I am feeling frustrated becasue I don't seem to have a handle on how to best manage it. When it started we tried Nystatin and it didn't resolve so we used Diflucan and it resolved immediately within 24 hours after just one dose. Then he continued to get it again every month. We have tried to manage it with alll sorts of probiotics and reducing sugar intake etc. but we always had to treat with Diflucan anyway. A couple of doctors said treat it when you see it yet now I wonder if that approach is best. Would it be better to keep him on a maintance dose. We continue to treat it every month and it has been 2 years. He has thrush again right now and it has not responded to Dilfucan as quickly as he once had. I have given 3 days of Difluc! an and still the thrush has no resolved. He actually had a bloody bottom lip from the thrush which has gotten better but his tongue still appears to be covered with yeast. It looks like a thin grey or white transparent irregular coating on his tonque. I sometimes second guess myself it is thrush so I try to get in to see a local doctor when he has it and I never can get an apt right away with a specialist. It is frustrating but I am so worried that resistance to Diflucan may be occuring and then what do we do? Joseph is only just about 3 years old and he has a lifetime ahead of him to deal with this candida problem. Any advice?? Should I continue the Diflucan and hope it resolves?? Have others had this problem and what has worked to resolve it. What do you do to manage it over a course of a lifetime?


Thank you for your help. Any emails would be great....and if there is someone I can call about it too, that would be wonderful.  

Response

Posted by dr at Nov 18, 2009 08:24 PM
Whereas the conazole drugs have transformed the care of thrush in APS-1 (Diflucan in particular), oral thrush often also needs to be treated with oral mycostatin or Genitian violet. The latter gives a purple tongue which at least the boys like to display.

Kind regards,
Noel Maclaren MD