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Old 06-18-2012, 04:00 AM   #1
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Hello..

Hello..my name is Laura, i'm from Romania, and i have a doughter-4 yars old. She may have PFAPA. Is someone who want to talk to me about that?

Last edited by alexa28; 06-18-2012 at 04:01 AM.

 
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Old 06-20-2012, 03:48 PM   #2
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Re: Hello..

Hello Laura. I'm sorry your little girl may have PFAFA but i did some reading on this and treatment with cholchicine can really, really help her. She can live a full and happy life if taking this drug with few attacks or even no attacks.

Has she been given colchicine yet and if so, has it helped her?

gentle hugs............Jenny

 
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Old 06-21-2012, 04:01 AM   #3
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Re: Hello..

Dear Jenny,
thank you for your fast reply. My doughter has been treatred with prednison (cortizone) and since march she is doing very well, no fever at all. they have been treated her with this medicine because it was the only thing that gave results. I have not heard about colchicine. pleaase tell me more about it and what are the risks..what about the attacks?
Best wishes,

Laura

 
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Old 06-21-2012, 08:30 AM   #4
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Re: Hello..

Byna ziya Alexa- domnishora! La myls ani!

I read about this syndrome thinking poor kids why they have to go through this... But don't know much about it unfortunately.
But I have suggestion for you. You may find some answers if you go on Auto-immune diseases and also to check Diet and Nutrition boards.
Sometimes people with rare diagnoses go there and you may find some answers.
Personally, I would check Vitamins and Nutrition for your child, often all the symptoms come from deficiencies... I am sorry you have to go through this and I wish to be more helpful.

Best wishes
Moldova

 
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Old 06-21-2012, 09:19 AM   #5
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Re: Hello..

Hello..thank you so much for your reply..i read about auto-immune diseases..but in PFAPA nothing is for sure..
Thank you..i will read more about what you said..it is a year since fever came..but since march she is doing very wel.

Best wishes,

Laura

 
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