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.
Hi, I'm so glad I found this blog. It's as if I had written it. My 3 year old is having an episode now, and I'm so frustrated that his pedi keeps chalking it up to a virus. Im convinced its PFAPA, although he doesnt develop the mouth sores. Doctors today diagnose on a "one size fits all" mentality, and Im hoping to find a doctor that will help us find answers. I hope your son is better.
ReplyDeleteThank you, for writing keeping this journal. As I read thru your blog & comments from others I'm shedding tears. My son is 4yrs old and has been going thru this condition since 7 months. He was just diagnosed in January of this year by the medical professionals;but diagnosed by me 2yrs ago. His pediatrician is still in shock that I called it, and she still has no clue about the background of the syndrome. I'm curious can you or anyone else recall an immunization bringing out initial symptoms of PFAPA? I'm 100% convinced this is vaccine related;whether it triggers something in the gene pool or not of course I can not say. But I remember it like it was yesterday when my son started exhibiting symptoms. He went for his 2 & 4 month immunization and was literally lethargic after both, now having a little roundabout medical knowledge realized "text book" speaking tiredness,fever and discomfort was "expected" but the motherly instinct within knew something was not right. Anyways to make a long story short, I unfortunately ignored that voice within and took him back at 7months (once again instinct made me hesitate) well took him in to get the 6 month vaccination routine and he got the supposedly "normal immunization fever" and continued to get every 28days til this day. Needless to say I have decided to forgo the immunizations at this point in his life since the medical community is absolutely stumped on the why's of this illness. But, no one has mentioned the Cimetidine to us so I'm intrigued by the comments about it being extremely helpful,dare I say cure?! And after a little resesrch & from finding your site the proof is in the pudding,lol..I'll be making an appointment this week to request. So thanks again for the encouraging blog and your detailed tracking of your child's & your journey. We need more moms like you out here. May you & your family be blessed.
ReplyDelete