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Old 12-08-2007, 09:22 AM   #1
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Location: grand marais, mn, usa
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true07 HB User
Respiratory symptoms with PFAPA anyone?

Hi everyone, I just found this website yesterday. The information & threads on PFAPA are a relief. My husband and I have felt like we were loosing our minds. I read over fifty pages of post yesterday & so many of them mimic our frustrations & feelings. Our son is twenty two months old & started having the fevers about 10 months ago, but we have really been watching them closely for the last six months as they have increased in frequency (every 14 to 18 days). We have been told over & over again that is just a virus.... here are some stronger antibiotics. We kept asking the questions I see so many of you have asked, Why then are his symptoms always the same?, Why are they exactly the same number of days apart each time?, Why don't we or our six year old ever catch the virus from him? After reading all of your post his symptoms all seem to match except one. Do any of your children experience any respiratory symptoms or labored breathing? I have not seen mention of this symptom & I was curious. When we take him to the doctor they always say his lungs are clear, but his breathing remains labored for the duration of the fever. Any comments or information anyone could share would be greatly appreciated. Thanks

 
Old 12-13-2007, 04:20 PM   #2
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Join Date: Dec 2007
Location: Northern Virginia
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Mom2Drew HB User
Re: Respiratory symptoms with PFAPA anyone?

Currently my son has not been diagnosed with PFAPA, but I'm pretty sure that is what he has. So far we have done the following:
-Genetic testing for various flavors of Peroidic Fever (waiting on results, one came back negative so far)
-Spinal Tap, showed no bacteria
-Never any step, bloodwork just shows slight signs of possible virus
-Tons of bloodwork
-He's very healthy otherwise.

This has been going on since he was about 9 mos and we noticed a pattern just after his 1st b-day. His episodes are about 22-24 days apart, but this last one was 20 days apart:-( Each healthy day counts!! He is now 19mos old.

Yes, my son has labored breathing during the episodes. I have dismissed that because of the chronic crying durning attacks and just the exhaustion he experiences during an attack. He tends to have a very slightly stuffy nose during attacks, but his lungs and heart always sound good to the doctor.

Our next stop is Childern's Hopspital in DC. I called them and their Pediatric Immunology Dept has LOTS of experience with these kids. A doc readily talked with me on the phone about the disorder.

I have heard getting the tonsils removed sometimes helps, after the doc runs a few more tests and if nothing still comes back, I will JUMP at the opportunity to remove the tonsils. We are desparate for some relief. Sometimes I feel like I'm going insane...I'm having such a hard time holding down my part-time job and don't know how much longer I can keep it together.

It feels so good just knowing other parents are experiencing this with their tots.

 
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