Comments on Singing and Spinning: PFAPA update

I so wish I had both of your email addresses to re...

2010-07-28T11:58:22.645-06:00

I so wish I had both of your email addresses to respond.

Ivy had her tonsils out and we went 5 months without a fever. We just had her first fever last week since the tonsillectomy. It is amazing how much she has changed since she had her tonsils out. She has more energy and she's enjoying everything more than she ever did before.

Was it a cure? It doesn't appear to be, but we've only had 1 fever in 5 months and it only lasted about 36 hours.

For us, the decision came down to was the risk of a fairly simple procedure worth it for the chance that she would not have to have a fever every month for the next 3-10 years. We opted for the risk, the procedure went smoothly and we're still glad we did it.

Sure, it is only an 80% chance of a cure. But depending on the source, a child won't grow out of PFAPA until they are 6 (the youngest I've heard) or going through puberty. If she outgrows it when she's 13, that is a really long time to have to deal with feeling like crap every 3 weeks for a week.

But, bottom line is that you have to do what feels right for you and your child.

My son has had pfapa for the past three years. We...

2010-07-28T11:44:50.427-06:00

My son has had pfapa for the past three years. We have seen all kinds of specialist. All but one doctor told us to wait it out, and avoid getting his tonsils out. "why bring mortality into a benign condition" was what I was told by one and I have never been able to get that out of my mind. He has the syndrome as I type, perhaps this will be the last month...

I'm pretty certain that my 3 yr old daughter has t...

2010-07-24T22:05:29.341-06:00

I'm pretty certain that my 3 yr old daughter has this. She's had the fevers for 2 yrs already & we are finally getting close to having some answers (I think). Her regular ped. just kept blowing us off until I finally demanded to see a specialist. We're taking her to an immunologist now and are in the process of awaiting lab results to rule out other possibilities. She has the mouth ulcers as well & now that I know about PFAPA and have been reading up on it - I feel it describes her syndrome well. How is your daughter now? Did you do the tonsillectomy?