As of today, Sunday, August 26, 2012, it has been about five weeks since our son spiked a fever. He had one small episode of feeling slightly unwell, which happened a few days before his dad had a mild case of the flu. He has been on cimetidine since late March, about five months, and it is true that the fevers have been less frequent and less intense. I'll take what we can get for as long as we can get it. He's been looking a bit tired lately, but I attribute this more to various relatives visiting over the last month.
Tomorrow is my first day of graduate school. Wednesday is his first day of second grade. Please, please, please let him stay healthy.
hello dear,
ReplyDeleteI'm sorry for not having written more but here is the holiday season and I returned home yesterday after five weeks in the mountains ...
I read of cimetidine you're using on your son ... in my group only a mother tried but did not get any benefit even had to stop for the side effects of his son ...
I always use vitamin b, and then I try to be as serene as possible ... with the child of 8 years I leave the vent because the last episodes were lighter ... with cortisone and everything disappears in a few hours ...
have you tried the prednisone?
with the little I used cortisone because the attacks are very strong ... and I'm very tired ...
I'm glad for your specialty ...
a big hug for you ... Laura!
That is ok -- I hope you had a wonderful five weeks in the mountains.
DeleteI am glad that the episodes weren't as bad (did any occur while you were away?). We have not tried prednisone, though if things flare up again, we might, if only to see if he responds. I am very hopeful that he is either growing out of it or that the cimetidine is helping.
Hugs to you, too! I hope that your 8 year old is feeling healthy.
p.s. I advertised your special pfapa-blog on my pfapa-blog! ;-)
ReplyDeleteThank you! :-)
DeleteHi Jennifer,
ReplyDeleteI just found your blog today while I was looking for info on treating canker sores. I hope your son is doing better. My (almost 8 year old) second grader started having fevers at 1 year old and suffered until we got his PFAPA diagnosis at 2 1/2. He was on prednisone (one dose of at onset and one, if needed, the following morning) until we pushed for and finally got a T&A when he was almost four. He has been fever free ever since - it was four years in September. He now gets the same illnesses everyone else gets (when PFAPA was full blown, he only had PFAPA - no colds or other problems, but PFAPA every 28 days like clockwork) but he is a strong, healthy boy. He has two ugly sores in his mouth at the moment, and an ear infection, but we hope it's not PFAPA coming back (I've read it can recur at around 7-8 and then again at puberty) but time will tell. Anyway - just thought I'd leave a note about our experience and wish you and your son the best.
Catherine
Catherine -- Thank you for your comments and reassurances. The boy has not had an attack since July. Whether it's the cimetidine or time, I don't know (and am not sure I want to stop the cimetidine to find out).
DeleteI am so glad that the T&A worked for your son and also hope that he is staying healthy.
And my apologies for the extremely long delay in responding.
My son also has PFAPA. He had T&A in July but had gone into remission a few months before that. I am going to share your blog on pinterest because I want to get the word about PFAPA out there. I think it is MUCH more common than is suspected. Thanks for this blog. I never found it when I was searching for info last fall.
ReplyDeleteThank you -- yes, it's been over two months since your comments. Once the boy stopped having attacks (and I went to graduate school), the blog has been neglected. I'm glad your son went into remission and I also understand why a T&A would be a good idea, too. I keep on wondering if our rheumatologist will question the cimetidine and we'll be back to the days of fevers.
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