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  • Possibly PFAPA syndrome?

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    Old 10-18-2009, 03:18 PM   #1
    arrowrug's Avatar
    Join Date: Oct 2009
    Location: Kentucky
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    Possibly PFAPA syndrome?

    My daughter has been dealing with a situation that causes her to spike hight fevers (103-104) for a period of 5 days every 2-3 weeks since the end of May of this year 2009, a month-n-half before her 2nd b-day. She has had repeated cath. tests for UTI's, strep and flu swabs all of which always come back negative. Her ears always check out fine and she never has a running nose or any congestion. Her throat is always slightly red but no signs of infections. She always complains of her tummy hurting a day or so into the fevers and I've always contributed to that having to take motrin/tylenol around the clock on an empty stomach. She has a loss of appetite every time and only wants water or milk. She always throws up just once each night when her fever spikes quickly. The past couple of episodes she has complained of her lower back hurting and her leg hurting (I had contributed this to aches with fever). Her doctor has always done a CBC blood work on her everytime and her white count is always high and with each episode it is higher. She has also come up being anemic (which fluctuates when she is sick and when she is not so much so that one day she wasn't anemic & the very next day her bloodwork showed that she was). We had a complete blood culture done and every thing checked at fine except that her platelet count was a little elevated but no alarming (this bloodwork was done while she was well). Her regular doctor was ready to pass it off to a viral infection so we took matters into our own hands and went to an infectious disease doctor in Louisville Ky. He isn't for sure what she has but he was able to reassure us that she didn't have some of the more serious life threatening illnesses, so that was a relief. He is leaning towards PFAPA syndrome but would like to run more test on her while she has a fever to rule out other possibilties first before decided PFAPA is what she has. After reading what so many other parents are writing about PFAPA I'm inclined to think he is on the right path. She has been sick 8 times since May 30, 2009 and it just wears her out. After every episode she will sleep 12 hours straight and still take a 3-4 hour nap for days. But while she is up she is full of energy and feels good until she gets another fever. She also thrives in between each episode so it is not hendering her growth or development in anyway. I'm so thankful for this message board and knowing we are not along in this. I did want to see if anyone child who has been diagnoised with PFAPA have they had an anemia flutuation (this seems to stump the infectious disease doctor) so I was just curious. She isn't so anemic that it is life threaten at this point and maybe the 2 are not related.

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