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.
How terrible this all must be for the whole family!
ReplyDeleteIs this the same illness that used to be called the Epstein-Barr Virus Syndrome (or the Chronic Fatigue Syndrome)? It had some of the same symptoms: periodic fevers, sore throat, fatigue and lymph node enlargement, among other things.
(I've replied twice, but my new tracking blocker on Firefox seems to have made it impossible for me to publish the replies!)
DeleteThank you so much for your empathy -- this is tough for everyone, but most of all for Galen, who is miserable.
PFAPA (originally called Marshall's syndrome) was identified in the late 1980s. It's an auto-inflammatory syndrome; during attacks there are high levels of c-reactive protein and high SED rates (which came through in the boy's bloodwork). A dose of prednisone at the first sign of fever will stop an attack in its tracks, but also tends to bring the attacks closer together. Kids usually grow out of it by the age of ten, but most kids get it before they are five. I'm guessing that we will end up going the tonsillectomy route, which is often (but not always) successful in stopping the fevers.
I'm so sorry you all have to go through this. I was actually one of the first diagnosed cases with pfapa. I'm 20 now. I still have a lot of health issues from the experimental testing and treatments that they tried when there were no known cures or treatments to work. There were 120 of us in the world at the time. I was one in the first rounds to start trying steroids like prednisone. I'm thankful looking back that some of the things we had to undergo at least are proving successful to treat children with pfapa today. I have had no spells in 8 years. I have had other health issues and undergone two surgeries in the past couple years that are not necessarily related to pfapa, but then again, who knows what is. It's hard being one of the oldest and it knowing what to expect later! but otherwise, I live a pretty normal lifestyle now. I'd be glad to help answer any questions if I can. My prayers are with you and your son! -Kate sashatodd_91@hotmail.com
ReplyDeletePFAPA is so mysterious -- why do some children get it? What happens to them later in life? I hope that you don't have any negative long-term effects, though I am also curious about what your other health issues are (and I am sorry if some of them were caused by the treatments). Did the steroids help? Did anything else? I assume you grew out of it, at least, though I've heard of people who haven't.
DeleteMy family has a history of autoimmune disorders and I've wondered if that is part of the reason our son has PFAPA.
Thanks for reaching out.
Hello, my first child who is 8 years old suffer from PFAPA. The PFAPA he was diagnosed at age 4 years after that for about a year had attacks every month with high fever, lymphadenopathy, and tonsillitis plaque always treated with antibiotics ... I discovered only after the diagnosis that they are useless.
ReplyDeletePFAPA when I found out my child was alone and it was difficult for me, finally last year I met another girl with a baby who suffers from PFAPA, we created a Facebook group that has received less than one year 100 friend requests from parents of children with PFAPA and we created a forum where we write the diary of PFAPA of our childrens, where we tell our stories ...
We are Italians, but the exchange of ideas between parents and comfort is always important ... if you want we can exchange opinions and ideas ...
tonsillectomy in Italy is not recommended for all children who have PFAPA but only for those who have a compromised quality of life because of the attacks... the doctors suggest cortisone but many of our friends using homeopathy and other natural methods to help their children in the attacks...
best regards ... Laura!
P. S. sorry if my English is not very good ... I hope that you will understand me. ;-)
Thank you so much for commenting, Laura! (And I think your English is pretty good -- much better than my Italian would be.)
DeleteIt really does help to know that there are other people out there dealing with the same thing. I love how the Internet can help us join together. I've read about people using chiropractors for PFAPA with good results. I am curious about what other natural methods are using. Tonsillectomy is a big thing (especially since the tonsils clearly play a role in the body's immune response). At the same time, this feels very disruptive. Today is day 24 and I am hoping we go beyond day 29, but we will see.
Anyway, I would love to exchange opinions and ideas, one way or another (since I can't speak Italian . . . )
Hello,
Deletesome moms in my group / forum have tried chiropractic, homeopathy, vitamin supplements and lactic b .... if you want to visit us on the forum: http://mammeepfapa.forumattivo.it/
There are some mothers who speak very good English and we could make a section just for you in English and other foreign mothers who want to participate, I think is very important to exchange experiences between parents ...
otherwise I will come here to chat with you ;-)
oops I meant supplements of vitamin b sorry ...
DeleteI'm sorry for not replying to you sooner -- I am taking a college class that is very short and intense and my abilities to juggle and concentrate on more than one thing at a time are diminished.
DeleteAn English section of your group sounds like a good idea. I would happily participate (in between my schoolwork, etc). There is a group on Facebook (that seems to be made up solely of Americans, but I could be wrong): https://www.facebook.com/groups/310757090457/
Thanks so much for reaching out. My silence doesn't indicate disinterest. Just a bit of stress.
Thank you dear, i've created a new section in my forum.
Deletethe forum is more useful to store more conversations and messages, facebook groups are immediate, but unfortunately the post down right away and you can not recover ...
to participate in the forum you must register ... ;-)
I recommend not to worry if you do not have much time, I also understand there is much I want to do when there are, indeed we are :-)
http://mammeepfapa.forumattivo.it/f14-mothers-and-pfapa
Thank you!
DeleteThis is day 29 and so far, no fever. I am hopeful that the medicine is working. This is one of those things that when it isn't happening, I like to pretend it isn't there!
I will register. ;-) (though I may have done so before? the Italian stymied me!)
Hello dear, sorry but I had a bit too busy these days I could not pass through your blog ... I too am like you when times get longer still hope it is finally the right time ... and hopefully for years now ... my big boy suffers from the age of 3 years now has 8 ... but we had also long pauses in between ... ;-)
Deleteto register for the forum you need to click on REGISTRARE and after putting a username and password ... in the meantime I will receive an email with your activation request and give you the ok... Then you can browse the forum...I will ask the mothers who speak very good English to do the translations of your posts for other ... excuse I use google translator to talk to you ... is probably full of spelling mistakes on my post ... sorry again ...
kisses Laura!!!
Yes -- I am sorry to leave your comment here without replying. It's true, when there are pauses, I like to pretend (or hope) that PFAPA has gone away. I am also taking two classes right now and time has been difficult to find. Now the boy is feverish again, though the symptoms aren't as bad.
DeleteI will register.
Thank you. And now I apologize for my bad Italian! :-)
Translation from google translator below.
Sì - mi dispiace lasciare il vostro commento qui senza rispondere. E 'vero, quando ci sono pause, mi piace far finta (o speranza) che PFAPA è andato via. Sto anche prendendo due classi in questo momento e il tempo è stato difficile da trovare. Ora il ragazzo è ancora febbricitante, anche se i sintomi non sono così male.
Voglio registrare.
Grazie. E adesso mi scuso per il mio cattivo italiano! :-)
Traduzione dal traduttore di Google qui sotto.
you are great and also your google-italian...... ;-)
Deletewe were on vacation this week on the Island of Elba ... both of my children have had their attack PFAPA but I have not done to scare ... and we fought the PFAPA but we also went out to sea and in the evening for ice cream ... soon greetings laura!
It's been a long time since I dealt with PFAPA in my daughter, but it was such a difficult time both of us still remember it. Like your son, my daughter's symptoms started when she was older - a couple of months before she turned six. She missed a lot of school the end of kindergarten and in first grade until we finally found out what was going on. Prednisone would stop the fevers and symptoms very quickly but brought the episodes closer together. We finally started her on cimetidine in 2nd grade and she was symptom free for the 18 months she was on it and an additional 6 months after she went off of it. Unfortunately, in the fall of 4th grade the symptoms came back - that fall, then 6 months later, then 3 months, then six weeks ... a definite pattern developing that did not go over well given her age. We decided it was time to remove the tonsils. They came out in January of 5th grade (age 10) and (knock on wood) she's been symptom free ever since. She's a healthy 16-year old now finishing 10th grade so it's been over 5 years. We resisted removing the tonsils when she was in 2nd grade because we wanted to try the cimetidine and I'm glad we did as it was worth trying and helped for a couple of years. I will say though, that she's very sensitive emotionally when she gets sick. It probably doesn't help that her older brother never got sick as a child so it made it even harder on her. Now she hates being sick and hates being fussed over when she's not feeling well! I will say - she has NEVER had strep even when exposed to it so mostly her immune system works fine. She did manage to get H1N1 though but other than a cough that lasted 3 weeks, she was pretty much fine after a very high fever day 1. It is hard to go through and hard to watch them suffer with such high fevers that come on so quickly - her worst was during a New Year's Eve party at our house when she was six and all of a sudden she had a fever of 105! But it does get better and I'm so glad we had her tonsils removed - there's no way she could have managed middle school with the fevers continuing and coming closer together. Good luck to all of you!
ReplyDeleteI've called these days of illness time under water -- and when it happens so frequently, it's very hard on everyone. Did cimetidine work quickly for you? Our son has been on it since March or so and we're just waiting to see if he develops a fever over the next few days.
DeleteThank you for sharing your experience (and my apologies for waiting to reply -- I'm taking a summer class that has taken over my mind!).
Hi! I am not sure if anyone still checks this blog, but I am searching for others that are dealing with PFAPA. My son has been dealing with it since he was barely 3 and he is now 6 and in kindergarten. We used prednisone for at least one year and it worked to get rid of the fever, but the incidences continued to happen monthly or sometimes twice per month. We had his tonsils removed in August of this year, and he has only had 3 episodes since then. I am not sure if we should go back to the prednisone as I hear of so many negative side effects and long term side effects, but the tonsillectomy obviously didn't take care of the fevers. I am feeling discouraged and not sure what to do next. Does anyone know how prednisone effects children who take doses every month for several years?
DeleteHello,
DeleteYes, the blog has been neglected -- you may get answers from people who arrive her via internet searches. Have you tried the PFAPA group on Facebook (https://www.facebook.com/groups/310757090457/) ? I also wonder if trying cimetidine would be helpful. It could be that the fevers will slowly start to fade.
I feel for you -- PFAPA is relentless, draining, and tough on the little ones and parents.
I have a 5 year old with PFAPA and like the rest of you have really struggled with the days off work/school and the general misery that it all involves. For us, we have been using homeopathy which has really helped. He has had less that 2 episodes in 4 months (which is an all time record for us!). It is such a horrible condition and as it is quite rare, it has been difficult to find a specialist who knows much about it. I have tried the steroids but personally didn't like the risk of long term effects and found the homeopathy to work better for us. Not sure that helps but hope it gives you more options.
ReplyDelete