Tuesday, March 15, 2011

PFAPA

(read pee-fap-uh). Not like Price Pfister.
This is where you get to learn about how we're going to handle this weird disease.
Today we went to see the immunologist at Primary Children's Riverton hospital. First I was really happy we didn't have to drive all the way to Salt Lake City as originally planned (Thank you!!!!), second, that place is AMAZING! It is so kid friendly, you don't feel at all like it's a hospital!
I love, love, love this doctor! She knew all about periodic fever syndromes and was able to answer all my questions. She noticed an indicator in Munchkin's blood work which was a marker for PFS that the doctors office missed. It was only slightly elevated, but she said it was an indicator. She was so thorough in her questioning and it made me feel a lot better about treatment options. I have to admit, when her primary care doc said "it sounds like PFAPA. I don't know a lot about it, but we usually just take their tonsils out and it goes away" it was a little unnerving. The immunologist said that yes, it seems to work for a lot of kids, but she's too young for that.
I agree!
My munchkin with a 105.3 fever. :o(
So the current plan is to give her prednisone as soon as her fever spikes. If that works and brings it down, we'll know it's PFAPA. If it doesn't work and her fever stays up, we have to do genetic testing for a disease called TRAPS. She doesn't seem to fit this one because it's genetic and as far as I know no one in our families have ever had something like this.
The last blood draw was pretty traumatic so if we can avoid that again we'll all be happy. We'll see how the next 3-4 episodes go and then we go back for a review in July. I finally feel like I'm not just being shrugged off because the regular doctors just don't know much about this. I feel like someone cares about my child, even if she isn't dying.
I'm feeling relieved, validated, and also happy I got to see my friend who lives right by the hospital. Pretty good day :)

6 comments:

  1. I'm so glad you got some answers - and from competent doctors! That makes all the difference.

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  2. Fantastic!!!!!!! So glad for progress and a PLAN!!

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  3. Hey, guess who also lives by that hospital? Yep, me. I do, it's true! So come visit me next time!

    So I hope she has PFAPA because that sounds better than TRAPS, but really I hope she just gets better and it all goes away.

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  4. Poor Munchkin! Wondered why we hadn't seen much of you guys lately... Thanks for the update!

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  5. My daughters PFAPA fevers stopped after 3 months of Upper Cervical Therapy. We could not go for T&A since she was/is younger than 3 years. Today is 134th day with out fever. If the upper cervical spines are not alligned correctly it triggres periodic inflamation. I learnt about these from a case in Calgary after months of internet research. I strongly recommend you to have you child be seen by an upper cervical chiropractor before you resort to any surgery. Since PFAPA is rare it is very likely that the Chiro might not have seen or knowm cases like this, but if he/she tries there is a good chance that the fevers not return. Let me know if I need to supply you will all the details related to my daughter. Google Upper Cervical chiropractic care to learn more.

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