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Thursday, March 1, 2012

Periodic fever, Aphthous-stomatitis, Pharyngitis, Adenitis (PFAPA) Syndrome

I think we have an answer. Thank You, Lord!

Maddie has been suffering from blisters in her mouth almost constantly for 2 years now. By constant, I mean just about always having a blister, or two, or three in her mouth at all times. We have been to the peds, to a couple of specialists, tried an anti-viral medication for 8 months with not much help there. We manager her pain with Motrin, but that really only just takes the edge off. It has been a difficult two years for her. Her eyes have been blood-shot for at least the past year with no change, as well. The blisters on the inside of her mouth only, and the red eyes, led us to the allergist (today), thinking maybe she had a food allergy. We did remove and reintroduce several foods with not much luck, though--but a Mama never quits when her babe is hurting.

Unfortunately, her condition had to worsen in order to receive a diagnosis.

The fevers started the day before Thanksgiving and haven't quit. They come with a sore throat and always, a new blister(s). Her voice gets hoarse, too, to the point that it reduces her to a raspy whisper.

With these new symptoms, today's specialist was able to make a probable diagnosis--this isn't his field, but his colleague is an expert--so you know where we will be going next. I am cautiously optimistic. My little girl has been suffering too long. All her symptoms are an exact match. And the good news--this should clear up on its own after 10 years of age. Maddie will be 10 in 4 months.

This condition is considered genetic and there are various forms of the syndrome--one that strikes those from the Mediterrean, for example. One way of diagnosing it, of course, is knowing if it runs in your family. We have no biological history, so that didn't happen. Other than that, it takes genetic testing or a worsening of symptoms to arrive at a diagnosis. I'm hopin our experience will help other adoptive families.

I have been in steady prayer about this and feel that God is shedding His light on us. I am so grateful!

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