Update

First, I would like to apologize for not keeping the blog up to date and not responding to comments. One of my impressions of other PFAPA blogs (there aren't many) is that they would suddenly and abruptly stop, often after the announcement of some new treatment, such as a T&A. When the illness isn't knocking at your door every two - four weeks, it becomes less important to blog about it.

My son hasn't had an episode since the summer. So far, he has missed one day of school in second grade, and that was for a tummy bug. I can only assume the cimetidine can take the credit. Or time. Or maybe he just had a really bad year last year (though I really think it was PFAPA).

I may not be able to keep up with the blog over the next semester. If you want to talk to me directly, please feel free to email me:  writingtosurvive@gmail.com. Just put PFAPA in the subject line. Your comments are welcome, too. Eventually I will respond to them and in the meantime, they may help others.

Tempting fate

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.

Cimetidine, PFAPA, and the blogging gap

As someone who has blogged regularly for over four years (my other blog is writing to survive), I am not used to both leaving a blog hanging without posting as well as not answering comments or following up. Since my last post, I've taken two short and very intense psychology classes (both requirements for the counseling master's degree program I am entering in the fall) and ran out of time and concentration to do much else but study and do (most of) the other things life requires. So I apologize if you've been looking for information or if I've left you hanging. I'm thinking of you in particular, Laura. But I am back! And I promise to update this more frequently, especially when the boy develops fevers.

Because the fevers have not gone away. We were heartened when he went for an unprecedented 36 days without a fever, and also when that fever was mild and lasted only three days. Was this the slow work of the cimetidine? Was this the beginning of a trend? We still don't know, because a week ago -- 28 days after his last bout -- he became sick again, and the fever lasted for four long days.

His symptoms are definitely milder. Generally, his fever stays in the 101 - 102 degrees Fahrenheit range. His head doesn't ache as much and his throat is  dry, but he does not complain of it hurting. He still vomits at least two or three times during the bout. We saw a new rheumatologist recently who doesn't believe this is PFAPA, but given she was wrong about the expected effects of cimetidine (she confused it with prednisone, at least that's how it appeared), I am not putting too much stock into her opinion. She was pushing for familial Mediterranean fever. Doesn't seem like it to me. Still, I can't be positive that his periodic fevers can be called PFAPA, which makes me think we should try the prednisone once to see if it has an effect. I don't want to treat the fevers on a long-term basis with steroids, but I would like to see if the fever immediately goes away with one treatment, which would identify it more firmly as PFAPA.

As far as the cimetidine goes, he's been taking it since March and the fevers are still with us. I'm beginning to think his fevers are part of a chronic, perhaps not curable illness, one that is hopefully temporary.

Still sick

This is day four.

This time around has been milder in some ways than before. Slow build-up. No sore throat. His fever hasn't gotten above 103 degrees. Still has stomach issues and intermittent headaches, and the ibuprofen isn't as effective. He's also been pretty miserable, has barely any appetite, even when the ibuprofen has brought down his fever. He isn't sleeping well. Based on past cases, it wouldn't surprise me if this lasts another day, though it can disappear pretty quickly.

Since September, the boy has been sick for thirty-eight days.

Weary. Trying to feel lucky that we didn't deal with this when he was really little. And trying to remind myself that as health problems go, this could be much, much worse.

UPDATED:  This fever lasted five days.

And on the 29th day

The boy came home early from school today, complaining of a slight headache and general malaise. Fever is now 99.5. I think this is just the beginning. Threw up in the afternoon and slept two hours. No complaint of sore throat.

I will update this post as the fever progresses or when it ends.

28 days since the last fever

I've been afraid to write it down officially because I don't want to jinx it, but the boy has been fever free for a month now. I assume it is the cimetidine doing its mysterious work. We're still not sure if it will lengthen the time between fevers, lessen the symptoms, or both, but for the moment every extra day between fevers is a wonderful thing.

The first seven months

Thanks to careful notations in my calendar and Facebook status statements where I kvetched about the boy's frequent illnesses, I have a good record of his fevers going back to October 2011 (initially I did not include the October fever in this tally, but now wonder if this was the beginning). The more frequent the fevers, the more information I recorded. Fevers got as high as 104 ℉ and always respond to ibuprofen. Nearly all of these episodes included vomiting, often at the beginning of the fever, as well as sore throat, swollen lymph glands, and a headache. His appetite diminishes and food doesn't taste the same. No mouth sores.

According to comparisons of blood tests from when the boy was healthy and when he was in the middle of an episode, his SED and C-reactive protein rates rose during the fever and went back to normal again during his time of health.

Fever dates are bolded and times in between fevers are in parentheses.

2011

Oct 11-15
(corresponding with his father's hernia surgery: fun!)

Nov 9-11 (29 days)

Dec 1-4 (22 days)

Dec 25-26 (24 days)
very mild

Jan 13-17 (19 days)

Jan 20
Doctor's appointment; since the boy is very healthy in between fevers, reassures us there are probably no immune system issues

Feb 7-10 (25 days)

Feb 29-Mar 3 (22 days)

Mar 1
Doctor's appointment while sick; various tests on four vials of blood; appointments with specialists set up

Mar 7
Pediatric infectious disease specialist; boy looks very healthy; orders more blood work during non-fever time

Mar 9
Pediatric gastroenterologist; boy looks great

Mar 22
Pediatric rheumatologist; boy is very healthy, possible PFAPA diagnosis; prescribes cimetidine (aka Tagamet)

Mar 24-26 (24 days)
Gets fever while on weekend trip; mild at first, fever shoots up when he gets home

Apr 19-22 (26 days)
Complains of headache on April 18, but no fever; fever develops at school and he goes home early