I've posted these on another thread but it probably makes more sense to start a new thread:
Has anyone else had something similar - recurring fevers every 20-something days that possibly started after strep?
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...
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 :-)
So the latest fever in this saga occurred 20 days from the 1st day of the previous fever as opposed to 17 which I had expected.
Unfortunately, this one lasted 3 days and was high all three days. I didn't do much in the way of measuring this one since I had tossed all the used thermometers and couldn't find the new ones.
After some new theories - such as there's something I didn't bleach that he came in contact with that was full strength - and much frustration and disappointment, I happened to have a conversation with a coworker and found out about a "holistic" treatment that can find various viruses and bacteria in the body. The practitioners prescribe herbal treatments. So I figured, why not give it a try.
Called up the practitioner and he gave me some recommendations. Xylitol is a natural herb, a sweetener that kills or reduces strep colonies. I googled it and got confirmation. He told me to purchase Xylitol toothpaste, mouthwash and nasal spray.
So I started thinking about it - we had switched my son from Orajel toothpaste a while back to Nature's Gate (I believe he may have tried a Tom of Maine's one first but that didn't last very long.) Nature's Gate has Xylitol. He used that for a couple months I think, then switched to a Kiss My Face toothpaste that also has Xylitol. I think the switch from Orajel happened in January. And that was the month he missed a fever.
He stopped using toothpaste either in April or March. After the March fever my previous post says.
So now I wonder if that's the variable that made a difference rather than bleaching. There are so many variables.
I have an appointment with the practitioner next week but it may get moved since his next fever will be close. Mouthwash, toothpaste and nasal spray are on order.
So we started using a xylitol toothpaste (as recommended by the holistic center when we called to make an appt) about 10 days before his last fever. Spry Xylitol toothpaste. That fever came 21 days (instead of 20) after the previous one. The fever lasted 2.5 days. Unlike the last time it was 2.5 days after using a xylitol toothpaste, this time, I believe it was high all 2.5 days. Last time, it was high the 1st day, low grade the remaining time.
We are also using probe covers on the thermometers to be safe.
I'm not sure the Spry toothpaste has as much xylitol as nature's gate (cherry). It says use 3-5 times daily. Who has time to brush a toddler's teeth 3-5 times daily?! So after that fever, purchased Nature's gate cherry again and this time, thank goodness, he says he likes it. Spry has the same texture as Orajel. Nature's gate is thicker.
In between these fevers - we had him looked at by the holistic dr. He did a scan and says he has strep all over his body and in his intestines. He also diagnosed one other thing, and something else he's not sure of, and prescribed a treatment plan. none of these included xylitol which i was surprised by.
Also took him to an infectious diseases specialist (IDS). She said that their theory is the immune system overreacts and it's triggered by a bout of infection. Could be any infection. So the diagnosis is PFAPA.
I find it easier to believe what the holistic dr would say and that is that the infection never left the body. I asked the IDS if strep could still be lurking in the body - told her of the coincidence with xylitol reducing his fevers to 1 day during the time he took it and how it went back to 3 days after he stopped.
She said it was outside her realm to comment on that (fair enough) and she would be interested if we continue w/ Xylitol. She recommended Prednisone. There are 3 treatment plans - Xirtax (I think), Prednisone and Tonsilectomy. Predinsone is used once at the fever onset and usually the fever is gone for that episode. Used again once at the next fever episode etc. Sometimes after a few treatments, it goes away. But can return again in 6 months or so - but at that point the fevers could be random - not every 21 days, so you can't be certain.
Tonsilectomy works 80-something% of the time - or maybe it was more.
Before going to the IDS, we showed his pediatrician the logs, and he had a ton of tests done. Malaria, TB, strep in blood (I don't understand the reading), many others. They drew about 5 vials of blood. These were sent to the IDS. All negative.
Anyway, we are using the xylitol toothpaste - nature's gate cherry. and we used the mouthwash once. he didn't like it. the nasal spray we haven't started yet due to issues. we aren't taking the holistic supplements for fevers, but for the other stuff. and we don't plan on taking prednisone just yet.
his next fever was due yesterday (20 days) and he did not have a fever today. so we are past 21 days.
I wish I knew why he skipped a fever after December. And I long to know what brought the fevers down from 5 days in dec to 1 day in march or april - i forget which. The Dec fever - he had a ton of yogurt in the morning that day, and he ate well (he normally does the day before the fever). Around 8pm he vomited and had a fever then. And then he missed a fever. The dec fever was the only one that lasted 5 days. They started at 3 days and went to 4 days before the dec fever.
I know that when we started using the xylitol toothpaste, he was using it twice per day, then i was concerned because he got sick so often and I felt salt water kills germs, so we used the toothpaste once per day and the salt water the other time. at the time, he didn't know how to spit the toothpaste out and was swallowing it. we did not have him rinse with salt water since he would swallow it.
now, he can spit - though he doesn't always spit the toothpaste out. We brush twice per day now with toothpaste and he rinses after with salt water.
He missed the last fever. It was due Jun 10th. It might be too early to say and I was planning to wait until his next one was due (overdue?) to post, but this is too exciting.
He has been using the Nature's gate cherry toothpaste since the end of the last fever in May. Twice daily. I'm not sure if it has to be ingested or just in the mouth. So I purchased a xylitol probiotic - Probiolicious gummies by Rainbow light. He's been taking that since after the last fever was due. Takes 1 daily. It tastes quite like the toothpaste.
Both toothpaste and probiotic can be found on Amazon and at Whole Foods.
I jinxed it. He did get sick but it was 33 days from the last time.
Since I have been writing it down, the most he's ever gone between fevers was 21 days until now. The fever lasted roughly 3 days - a bit longer than last time.
I wonder if the other toothpaste - Kiss My face brand - had anything to do with fever reduction in the number of days. That one has Xylitol but also Tea Tree Oil. Tea tree oil is a pretty nasty naturally occurring substance that kills bacteria and fungus. He never swallowed this toothpaste. I also tried it, and there was no way I could bring myself to swallow it - I even gagged a few times - not that it tasted bad in any way. It's very minty. I'm a bit afraid of it because of one bad review on Amazon - someone reported that it was just awful and I bet they had a quality control issue with the Tea Tree oil.
We started him on the holistic dr's supplements when the fever started and he has been on that daily. Burdock intrinsic and echina intrinsic (along with the other unrelated stuff.)
To add to the mix, my husband thinks the lengthening in time may have to do with putting hydro-cortisone on his rash. He says that hydrocortisone is a steroid and steroids suppress the immune system. The application is topical so I question that. We did use it extensively (2 weeks) at one point- then it went away for about 6 months. I don't recall the timeframe. Now we use it fairly randomly. It's 5% I believe (prescription strength).
His next fever is due in 4 days (20 days from last.) We'll see what happens.
The next fever occurred 20 days from the last. So I immediately took him off the holistic meds for the fever (burdock & echinecea).
My dad says that Xylitol does not kill strep, just causes it to coagulate and become ineffective. So maybe the burdock/ech is un-coagulating if anything.
The next fever was 23 days after that, then the following one was 31 days later. Seeming to mimic what happened after he started on the Xylitol toothpaste before the Burdock - where it went from 20 to 21 or so, then 33 or so.
Sometime between this last fever and the next one (40 days later) we started using the Kiss My face toothpaste again. This one has tea tree oil in addition to Xylitol. The next fever was 40 days later.
Following that, we did not do so well giving him the probiotic. I've been trying to remember to toss his daycare toothbrush as well. The next fever was 23 days later.
We were diligent again with the probiotic. Skipped brushing his teeth one night this period. Next fever was 36 days later. That was the last one.