My 8 year old son has had unexplained fevers for 15 months now. Doctors are in the process of diagnosing periodic fevers. My biggest question is can you get PFAPA at this age (7) as most posts I read here have kids that are between 1 & 5 years old that get it. Not as late as 7. And my last question is - is PFAPA hereditary like the other periodic fever syndroms? He's being genetically tested right now for all of the hereditary ones.
My son was diagnosed with periodic fever syndrome as well. He did not start getting sick until the age of 7. Before that..... I cannot even count on one hand how many times he was sick (with even a cold). We just continued to write EVERYTHING down when we noticed consistancy and they kept telling us "fever virus". He is now 15. For the past two years he has been on 0.6 mg. a day of colchicine. He would take one pill every morning and the fevers stopped. We tried this past summer taking him off the pill to see what would happen and he just got sick again. After two episodes we put him back on the pill. Then we started noticing that every two months he would come down with all of the same symptoms (except the fever)???? and be sleeping for 3 days, just dragged down. Called Dr. Miller of Childrens Memorial who said his body may be getting used to the dosage so now we have doubled the dosage. He takes 0.6 mg. of colchicine in a.m. and 0.6 mg. of colchicine in p.m. Since this, he has not been sick. So for now, with him being so active I don't dare take him off of it being that it works. Don't know what will ever happen when we do decide to try again. I heard the same thing as you - usually happening between 1 and 5. I too was confused that he started at age 7. No, it is most likely NOT hereditary. No one on either side of my our families has anything like this. They said for some unknown reason, he has a mutated gene. The body sees it as a foreign object and wants to attack it. Even though there is nothing wrong with him, that why all of the million of tests came back normal. But the colchicine works to fool the brain telling it "that foreign object you see is ok., leave it alone". All I know, is thanks to this little pill - his life is finally back to normal!!! 6 years we dealt with that - every 21 days!!!!! Best of luck to you!!! Believe me, for the amount of people I've talked to regarding this..... even though they call it rare, it is much more common than people realize. There is an institute in Maryland that is ACTIVELY researching a cure for this. I think its called the Maryland Institute of Health. If you look on the website - for ABC7, Sylvia Perez Health Beats, back in May 2009 I think - - - she did a show on frequent fevers. It explains it further. It was a helpful show.
One last note, I was told children diagnosed with PHAPA have the same symptoms as PERIODIC FEVER SYNDROME, the only difference is with PHAPA - the child needs to go on steroids because their bodies do not react to tylenol, motrin or advil. My son, fortunately was ok with tylenol and motrin to subside the fevers. Hope this helps.
The Following User Says Thank You to Marley01 For This Useful Post: karlsberg (09-03-2011)
My son does respond well with advil. Not so much tylenol. My biggest puzzle is that he does not get swollen glands, no rash, no mouth ulcers, his episodes are NOT consistent (anywhere from 3-7 weeks mostly or 11 weeks once). he now gets the body aches first than fever sets in for 3-5 days. then he wakes up completely fine. Was your sons episodes consistent? did he have severe body aches? swollen glands? mouth ulcers? Has he been diagnosed with PFAPA? what kind of a doctor to you see to deal with this? All the doctors I've seen now just keep referring onto the next one, as none have a clue what to do with us at this point. It's so frustrating. What are the long term and short term side effects of colchicine? Does this drug stop inflammation in the body? As it would seem to me that my son has some kind of autoinflammatory syndrome and his body isn't able to control inflammation. This is why he gets body aches and then fever due to inflammation. Although its definetly NOT juvenile arthritis as his joints are not sore and he doesn't have the same symptoms as JRA (and blood work would not come back fine). The only thing his blood work shoes in some inflammation in the body.
Re: 8 year old son - unexplained fevers for 15 months
I've been trying to get in touch with Marley. I'm new to this board so please be patient... I do want to thank Marley for posting her original and in so much detail. I think it helped track down what may have caused my son's recurring fevers. I hope someone will find this post useful.
My son started having recurring fevers a few months after age 2. He had recurring ear infections starting at 3 mths, lasting for 6 mths until the ear tube surgery, so I thought his immune system was catching up since he had always been on antibiotics then, and eardrops. His tubes closed in May of 2010. He then had Roseola sometime after that, then strep in October of 2010. After about 9 months of the fevers - they would last for 3 days - I started keeping track and noticed that they seemed to occur every 21 days. I kept track by looking at emails of when I was out from work so not very accurate. The last few months, it's been every 20 days but it seems to be 19 to 23 days. I looked up recurring fevers and found Marley's post. She seemed to think it started with strep so I did due diligence with checking when his started and lo and behold, it started the month after strep. (Back in those days it may have been 4 weeks apart). There was a fever episode in November 2010. Following that, I don't have records until May of the following year. From May of that year, I have records that are every 19-23 days. It's possible he had fevers between Nov and May but I'm not certain. So after 9 months of fevers, I started to think this was abnormal and told our doctor who said to keep close track of it and if it kept recurring that he would refer us to an infectious diseases specialist.
He's been to the pediatrician during the fevers and had blood drawn and everything looks normal each time.
At the time I started tracking, the fevers were starting to be 4 days instead of 3 like at the beginning.
But here's the kicker. At the time I started to track it- writing it down, my son drank from his sibling's bottle and so I sterilized all the bottle parts. and guess what, he went 46 days (23 x2?) without a fever (from december to feb). not only that, but his fever was back to 3 days long. i realized we stuck a thermometer in is mouth during that 46 day period. the thermometers i had washed with soap and hot water but never thought to bleach them - i know, pretty stupid. never had sterilized the bottle parts either. So I started to wonder if there is still some lingering remains of the strep on stuff he'd had in his mouth. Also want to point out that he played a lot with christmas toys after december (the fever was end of december). My husband bleached the thermometers and I sterilized bottle parts again and I bleached a bunch of toys. then shortly after his fever, i saw him stick a harmonica in his mouth that hadn't been bleached. i don't know if that had anything to do with anything. his next fever was in march and this time only on the first day did he have a high fever 102+ underarm. The next 2 days it was a low grade fever that didn't get past 99.6 underarm. No need for any meds the last 2 days. also want to point out that i used the thermometer underarm the entire time (at least the 2nd 2 days, not sure what my husband did the 1st day.) The day after his fever ended, I stayed home and I removed all toys for bleaching, bleached most surfaces he's touched, including mirrors, handrails, doorknobs, table. So now i'm waiting for the april fever, due next week. i don't have high hopes though that it'll skip. sterilized bottle parts, bleached thermometers and made sure to wipe the entire surface of the thermometer w/ bleach solution. also bleached the tylenol/ibuprof dispensers.
Notes on sterilizing - i washed the parts first w/ soap and water. Heated water to a rolling boil. Put parts in, waited for the water to reach rolling boil again (lid on). Timed 15+ mins. Our dishwasher has a 'sanitize' mode. i guess that means the temp gets high enough to sterilize things. so bottles go in here, and the brushes i wash the bottle parts with after a sterilization session, and the containers i used to hold the non-sterilized parts. yes i get very fastidious here. :-).
so i have a theory - the strep virus in some form or other is somewhere in my house. he comes in contact with it on a near daily basis. it's dormant for about 19 days of a 23 day cycle and is then active 4-5 days of that cycle. it's not dying - probably lives for years and weakens with time. he didn't come in contact with it the first 23 day cycle for that 46 day period that he was fine. he came in contact with a weakened version last time since his fever was high one day and low the next 2.
It sounds as though colchicine suppresses fevers. I'm afraid of the side effects given how young my son is. I'm going to go with my theory and see if I can't kill this thing. but i'm not feeling very optimistic...
Re: 8 year old son - unexplained fevers for 15 months
So my son had his recurring fever (April fever). It lasted one day. It happened 17 days after the first day of the last fever. On the night he had the fever (we noticed night - he was talking in his sleep and so we checked his temp), his temp was 100.6 oral. Gave Tylenol.
The next day, around 8:30am, his temp was 99.3 oral. At lunch time, 100.5 oral, and bedtime 99.6. He was back at daycare the following day.
The 17 days instead of 19 or 20 intrigued me and after some thought, I came up with a new theory. This one makes more mathematical sense than the last one.
I think he is getting infected after his last high fever, 17 days from the last time that something infected with strep was stuck in his mouth. In this case, I think the thermometer is the culprit. (In Mar, we used the thermometer underarm for the last 2 days.) This theory explains why he skipped a fever after the December fever.
We were visiting relatives when he had his fever in December of 2011. On a prior trip, I had noticed that packing the kids toiletries and meds took forever - locating them is what took a long time. So I had purchased and pre-packed new meds and toiletries (including Tylenol, Ibuprofen, thermometer, toothbrush and toothpaste.) None of these items were infected, and he missed a fever. When we thought it was time for his next fever, sometime thereabouts, we checked his temp.
This theory also meshes with another mom's posting I came across searching for recurring fevers. She said that her child didn't get a fever when they were on vacation. And another poster says that her child's fevers now last about a week and takes about 4 weeks to recur but used to be every 21 days for 3 days. Who knows...
When he had 3 day fevers, the time between the start date of two consecutive fevers was 20 days. I may be off by a day or so with the 17 day theory.
So only the bleached legos made it back into the playroom. After his last fever, I tossed his toothbrush, toothpaste, all medicine dispensers, all opened Tylenol and Ibuprofen and all thermometers. Sterilized bottle parts.
One more thing... he has been brushing his teeth with salt water. Not sure exactly when that started - probably after the March fever. It certainly helps to avoid recontamination of toothbrush and toothpaste if he is contagious during these fevers.
For the longest time, he has been rinsing with salt water after brushing his teeth with toddler toothpaste. So the salt water is not something new - the avoidance of toothpaste is.
Marley had wondered if what her son had could be genetic. The child's father was of German descent. In case there is a genetic component to this, if anyone's wondering, I'm Asian ****** (why does this website have issues with the word meaning from india?), my husband is part English, German and possibly dutch. (His father's mother was German.)
Given the fact that bleaching and sterilizing seems to be making a difference, I can't help feeling that it's more of a virus lurking around. It could be that a genetic factor makes him more susceptible.
Some background regarding his catching strep. He had a fever that lasted 3 days. It was gone either on the 3rd or 4th day but we had a pediatric appt and took him in. He tested positive for strep and we gave him the antibiotics. (It was either Amoxicillin or A....) He was not severely affected by strep in ways I've heard of others being affected - he was able to eat a little bit, not much. I thought he fought the strep so one of the reasons I recall now that I only used hot water and soap and didn't bother sterilizing everything was because I figured he had fought it and was therefore immune.
His next fever is due (17 days from last) tomorrow.
The thermometers last used were bleached to my satisfaction prior to use :-)
I'm holding my breath.
Last edited by momAJ; 04-26-2012 at 08:47 PM.
The following user gives a hug of support to momAJ: karlsberg (04-27-2012)