If there was one lesson I learned from my painful struggle with FQ toxicity, it was to be vigilant and informed about what goes into my body. I learned a great deal about the abundance of chemicals and genetically modified organisms (GMOs) in our food supply. I became an advocate for organic food, natural products and a life with as few medications as possible. One thing I still failed to question, however, was the safety and efficacy of vaccines.
Vaccine Side Effects: Learning the Hard Way
I’m a health psychologist, a teacher and researcher by trade. I have read about and believed in the public health benefits of vaccines since I became pregnant. After all, no matter your stance on the vaccine issue, no mother wants to see their child get severely ill from a preventable illness like measles. Having suffered tremendously in the early years of my child’s life with my own health issues, I wanted to make sure she was as healthy as possible, and I believed that vaccines were the best way to protect her health and her life, for that matter.
My daughter had her first fever of unknown origin at just 16 months old, shortly after a round of vaccinations. The fever reached 104 degrees and did not respond to Tylenol or Ibuprofen. She had no appetite and vomited when the fever would spike. I took her to our pediatrician and was told it was likely a virus. However, the doctor was perplexed as to why the fever was not coming down with fever reducing medication. We put her in tepid baths and held her for three days until the fever finally broke. My daughter seemed to bounce back quickly and we believed the pediatrician’s diagnosis that she had somehow caught a virus that caused her high fever. When the same fever returned four weeks later, I took her back to the pediatrician for answers. This time, she presented with a red throat, but the rapid strep test was negative. We were sent home with a diagnosis of another virus. My daughter again recovered after 72 hours, but I was uncomfortable with the diagnosis. Something just did not seem right. We were told that kids that young often get viruses and we should expect up to 7-12 illnesses a year. However, my daughter was not in daycare, and I was notorious for washing hands. Where was she picking up these viruses? To my knowledge, she had not been exposed to anyone who had been sick.
Four weeks later my daughter spiked another high fever in the middle of the night, and would vomit when the fever would reach it’s highest, generally around 24 hours after it first began. Tylenol and Ibuprofen only took the fever down one or two degrees, but this time I knew what to expect. I took her to our pediatrician, and once again, my daughter presented with a red throat and a negative strep test. We were sent home yet again with a diagnosis of a virus, but I knew in my heart something more complicated was going on. The month before, I had become even more vigilant about hand washing, and would use hand sanitizing wipes whenever we went out. I kept her home and out of the public as much as possible, because I had a feeling that we might be dealing with an immune system issue.
Mystery Diagnosis: Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis (PFAPA)
Given my training as a scientific researcher in the health field, the first place I went was the scientific literature. I typed “cyclical fever” into the Pubmed search engine. I came across this article and was introduced to a periodic fever syndrome called PFAPA (periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis). With PFAPA, children spike a high temperature every 2-8 weeks, usually with eerie periodicity, and often present with pharyngitis, swollen glands, and mouth sores. Fever reducers are usually ineffective. My daughter certainly had the high fever and the sore throat that seemed to come almost exactly four weeks apart. I continued with my research, and read that PFAPA can present with a variety of combinations of the above named symptoms (and other possible symptoms such as joint pain and headaches), but the hallmark is the regularly occurring high fever. PFAPA is generally not harmful to a child’s growth or development, and children eventually grow out of it before their teen years. Regardless, it is still extremely difficult to watch your child suffer month after month for days at time. PFAPA children often miss up to 30 or more days of school a year; vacations and childhood activities are often interrupted by illness, and children can suffer distress over being chronically ill. Many PFAPA children also experience febrile seizures from temperatures consistently reaching 105 degrees or higher.
I called my pediatrician, who had heard of PFAPA but assured me that it was rare and not a cause for concern at the moment. He suggested taking a watchful waiting approach. I agreed, as I did not want to subject my daughter to unnecessary testing. But when the fever occurred again three and a half weeks later, I became more forceful in my request for additional testing. Periodic fevers can also be caused by serious syndromes including cyclic neutropenia and juvenile rheumatoid arthritis (JRA), and I wanted to know what we were dealing with so I could get her treatment as soon as possible. We were referred to an infectious disease specialist at our local Children’s hospital who was able to rule out those alternate diagnoses.
After meeting with my pediatrician, PFAPA literature in hand, I requested a referral to a pediatric ear, nose throat specialist (ENT). In my research I discovered the only known cure for PFAPA (besides the natural progression of “growing out of it”) was a tonsillectomy, which fully ceases attacks in about 80% of cases. Although there is still much unknown about the etiology of the disorder, scientists have found that during PFAPA flares, IL-1–related, and IFN-induced genes are overexpressed, and when the child is healthy, gene profiles look normal. To put it simplistically, as an attack develops the body creates an inflammatory response to a phantom infectious agent by retaining T-cells in the tonsil tissue. By removing the tonsils, there becomes no place for these cells to congregate and episodes abort. I was granted the referral to the best pediatric ENT in our region of the country. He was familiar with PFAPA and agreed to perform the tonsillectomy on my daughter at the tender age of just 27 months. At the time of her surgery, ten months after her first fever, she had experienced twelve PFAPA episodes. Since her surgery, I’m happy to report that my daughter has been PFAPA-free for one year.
Autoimmune/Autoinflammatory Syndrome Induced by Adjuvants (ASIA)
Although I’m beyond grateful for her recovery, the story does not end there. I was still plagued with the “what caused this?” question. From my detailed and lengthy research, its seems doctors are still uncertain. What they do know is that unlike other periodic fever syndromes, there has not yet been a definitive gene identified for PFAPA, leaving much speculation to environmental causes. PFAPA is classified as an autoinflammatory disorder with the involvement of both innate and adaptive immunity. What could have caused her immune system to become so erratic?
My research revealed some possibilities. The first and most likely, in my opinion, was vaccinations. It was once believed that adjuvants in vaccines, such as aluminum, were not harmful and caused no independent threat, but more recently, scientists have concluded that adjuvants can induce autoimmune and autoinflammatory disorders in both human and animal models. In fact, adjuvants like aluminum are designed to create an inflammatory response in order to better facilitate the body’s production of antibodies to the antigen in the vaccine.
Only in the last few years has the scientific community began to formally recognize the role of adjuvants in inducing autoimmunity/inflammation. To date, a handful of syndromes have been identified as being associated with exposure to an adjuvant: siliconosis, the Gulf war syndrome (GWS), the macrophagic myofasciitis syndrome (MMF), and a less specific cluster of symptoms referred to as “post-vaccination phenomena”. PFAPA children show many of the clinical manifestations of ASIA post-vaccination phenomena, including fever, arthralgias, increased erythrocyte sedimentation rate, skin rashes, and sleep and gastrointestinal disturbances. Furthermore, PFAPA children would meet many of both the major and minor criteria for diagnosis of ASIA.
I am not arguing that PFAPA is likely induced by vaccines alone. I recognize that my daughter likely holds an unidentified genetic susceptibility to this syndrome. In fact, although not conclusive, new research is beginning to identify candidate genes for the syndrome. I do believe, however, that vaccines were the environmental trigger that likely caused the gene(s) expression to be altered. I am also not arguing that all cases of PFAPA are induced by vaccinations. Other environmental triggers in combination with genetic susceptibility such as illness, stress, trauma, allergies or other toxins may play a role.
Vaccine Safety and Advocacy: Incompatible Arguments
As mentioned before, I had always supported vaccination programs and acknowledged them as a pillar of public health efforts. Since my daughter’s diagnosis, I feel discouraged and confused regarding vaccinations. I’m discouraged because it seems parents have no other options for immunization other than vaccinations that contain harmful adjuvants like aluminum. Although I recognize that my daughter may have had a genetic susceptibility for PFAPA, I have put together an evidence-based argument that her syndrome was triggered by her vaccinations. I have done so through careful research, collaboration with her physicians, and through the process of elimination of other causal factors. My research has also convinced me that many children who suffer from autoimmune or autoinflammatory syndromes may have had healthy childhoods had they not been exposed to routine vaccinations. Unfortunately, medical science has not yet reached the point of being able to easily identify susceptible children and prevent this phenomenon from occurring.
With that being said, I still do not want to see my daughter suffer from something worse than PFAPA, including deadly diseases like meningitis. How can one argue for vaccine safety while still acknowledging the benefits of being protected by immunizations? In my experience: you can’t. They are incompatible arguments that create cognitive dissonance. You simply cannot say, “Vaccinations are a good thing, except they are not safe.” The minute you begin fighting for vaccine safety is the minute that you begin to be ousted by the medical community and anyone else that vaccinates their children, for that matter. You are immediately put into the category of “anti-vaxxer”, and people stop listening before your argument even begins. The backlash against those who question vaccine safety is quite biased, largely unwarranted and, in my opinion, offensive.
I am still unsure of how to proceed regarding my daughter’s remaining vaccinations. I have spoken with her physician about formulating a plan on what is best for her health at this time. By discontinuing her vaccinations, I run the (probably small) risk of exposing her to potentially dangerous diseases. If I choose to continue vaccinating her, I run the (probably large) risk of negating the effects of the surgery, which to date is the only known cure for PFAPA. I have heard several stories from parents of PFAPA children whose child’s fevers returned post-surgery after a round of booster immunizations. Apparently, in these cases, the body chooses another route for the inflammatory response after the tonsils are removed. Alas, the vaccine argument is not as black and white as many propose, and it is unfair and inaccurate to treat it as such.
Vaccine and Medication Side Effects: Neither Rare nor Insignificant
The vaccine manufacturers and even some scientists maintain that adjuvant-induced syndromes are rare. In contradiction, however, the literature also states that (like with fluoroquinolones) the manifestation of these syndromes can be delayed for weeks or even years after exposure to the adjuvant. Therefore, it is unlikely that we have any sort of accurate estimate of how many individuals have developed autoimmune or autoinflammatory syndromes caused by vaccinations. As one scientist states,
“…this global view of ASIA probably represents only the tip of the iceberg. Encouraging physicians and patients to report adjuvant-related conditions will enable a better estimation of the true prevalence as well as the width of ASIA spectrum. It seems that the role of adjuvants in the pathogenesis of immune-mediated diseases can no longer be ignored, and the medical community must look towards producing safer adjuvants…”
Indeed, with the rise of complicated idiopathic illnesses occurring alongside the rise in prescription drug use and lengthened vaccination protocols in America, scientists and medical practitioners should be increasing their focus on pharmaceutical safety. Although this correlation does not imply causation (one could argue that the rise in prescription drug use is due to the rise in illness caused by other factors), causal relationships between adjuvants and these types of illnesses have already been demonstrated, warranting further investigation. Many people, including children, are suffering tremendously with complex and painful syndromes while their causes continue to be ignored by the medical community despite overwhelming scientific evidence for their existence. Their suffering is viewed as rare, therefore insignificant. I’m left wondering, how can a child’s suffering ever be insignificant?
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This story was published originally on Hormones Matter in May 2014.
I hope this thread is still open? I am just wondering about peoples thoughts on the covid 19 vaccine? Will you vaccinate your child/children and risk the return of PFAPA after a successfull tonsillectomy and being fever free?
Thank you for this article. Our grandson. He was a babbling happy. Then he was given a round of vaccines and we noticed an immediate change. His baby talk seemed to almost cease and he lost the twinkle in his eyes. He began singing as time progressed, we were scared to death of autism. His babysitter swears it was the vaccines (she noticed the change too). After significant research a few parents experienced the same. They recommended fish oils, vitamins, Rife, chiropractic, a healthy organic diet and eliminate gluten. We don’t know if was one, a mix or all that helped him start talking. We understand Rife can eliminate toxins and metals, and were told not to cook or bake with aluminum or foil.
I was so happy when I read this. My daughter went through the same thing. It is hard to say if brought on my genetics or vaccines. My daughter diagnosed with PFAPA at 18m (started at 1 year) then got her T&A out when 4 years old the fever episodes stopped almost completely. Going to the chrio has helped and she barely gets them now, maybe 1 to 2 times a year. We also stopped vaccinating at age 2 and she is the healthiest she has ever been (she eats organic and non gmo when we can) purified water, we boost immune natural ways. She is extremely smart and ahead of her time. I hope nothing bad develops later in life from the PFAPA or that we vaccinated her as many harmful adjuvants and God knows what in them. Thanks for the article.
I can see how some may think its linked to vaccines and it surely could be, however my daughter had PFAPA and has never been vaccinated, not ever had blood taking until the fevers, nothing. So I do believe it’s more than that.
Thank you for completing and sharing this research. I have two children with PFAPA and identify with so many of these fellow parent’s comments and concerns about how PFAPA is effecting our children. My son was “accidentally” given his MMR twice due to a clerical error. I was furious when I discovered the error as I was already so concerned about possible side effects of this particular vaccine. It was a nightmare and still troubles me. He has struggled in so many ways because of PFAPA, but thankfully has been nearly episode free since his T/A (at age 4) and is now 12. He still struggles with a sensitive stomach and other symptoms and side effects from the difficulties of PFAPA though. My daughter is just 2.5. Our two other children have not been effected.
I was just wondering how did you daughter do getting her tonsils out at 27 months. My son is 2 and I’ve been dealing with PFAPA for about a year and for the past three months the episodes have been coming every two weeks which has been very difficult. I know 2 is young to get tonsillectomy but if it continues this frequently I was contemplating maybe doing it at 2.5. Just wondering how she recovered from surgery.
Marisa, I was 1 year old when my tonsils were taken out. Since it was me who had it out, I have no idea how my recovery was, but I have lived all my life without tonsils and have been doing great. So don’t be concerned. Some things just need to be different for some people.
I am 17 years old and have suffered from PFAPA since i was around 8/9 months old. I have had vaccines, but like other people commenting have never had a flare up related to/around the time of a vaccination. This is interesting research and something I will look into further.
Hi Sarah, thanks for shedding some light on this strange syndrome. I’m with you regarding the vaccines. I’d like to know your opinion on vitamin d and tart cherry supplements? And could give us an update of your daughter’s health now. Thanks
Thanks so much for sharing your insight! My 12 year old son had his first high fever (104F) after receiving his 2 month old vaccines. Our doctor’s nurse at the time, said that it could in no way be related to the shots he had received just a few hours earlier. “He must have picked up a virus while he was here at the office.” For the first 4 years of his life, the many pediatricians we brought him to would write off his fevers as a bad virus or urinary tract infections. We finally found a doctor when he was 4 who did some research in his personal time and after some blood work diagnosed him with PFAPA. For years we held onto hope that he was outgrowing it and by eliminating gluten and dairy, they were mild and spaced out. The diet was/is hard for him to maintain. He finally had the T&A a year ago. After the surgery, he had a 5 month break. Unfortunately, the fevers are back every 25 days and between fevers he says he feels bad almost every day. I’m wondering if this ASIA syndrome is causing his Chronic Fatigue. Do you have any additional insight since you first wrote this article? Do you know of any treatment that helps with ASIA and/or PFAPA? We’ve started back on supplements–Vitamin D, tart cherry tabs, probiotics, Omega 3’s. Also, we’re having an ENT see him in another week to see if his adenoids have grown back. We’re very frustrated and feeling depressed. Thanks!
I have my girl suffering pfapa since she was 16 months old she is now 2and half years. The attacks at first waw occuring every 3 weeks like a clock. Then it became irregular some attacks showed aphthous ulceration and some dont. Over the past 3 months it occurer every 6 weeks. Unfortunately the fever is not responding to antipyretic ttt and my daughter already had 4 attacks of febrile convulsions. Every time i m admitted in hispital trying to minimize the risk of getting her into fits and after failure of controlling fever at home. I m now considering tonsillectomy strongly. Any advice about the proper timing of removal just after the attack or before the next. Would it differ in the presence of the auto made antibodies or it doesnt matter the time of doing it on its prognosis after tonsillectomy?
I am local to you and my daughter is getting referred because the pediatrician is concerned for PFAPA. I would love to know which physicians you saw in this area. I doubt I will find anyone else in Lexington who has much experience with this.
We saw Dr. Cotton at Ciny Children’s for the tonsilectomy. Our pediatrician wasn’t the best help so we ended up switching to Dr. Michael Simon here in Lexington.
My son’s first PFAPA fever came just three hours after his last vaccine (HIB) at 17months old. I agree with this article!
I also have questioned the role of vaccines with my daughter who has PFAPA. I would very much like to speak witb you in person.
My number is 414-915-3578.
I am so pleased to hear your daughter continues to do well. Your story resonates with me so much, it is very validating to read. I’m just wondering whether your daughter went through any genetic testing prior to her T&A? We are in the process of considering both the advantages and disadvantages of going down this path e.g some genetic AutoInflammatory conditions have a lower success rate with T&A. Any thoughts?
Our Doctor didn’t feel the need to do it because her symptoms were Classic pfapa, but if there are more uncommon symptoms present he said he would do it. I think it’s a personal preference and your doctor can help guide you as to if it’s necessary. We are still pfapa free 3 years later!
How wonderful Sarah!!!! It must be such a life changer for you all! Thanks so much for sharing your story!! It really gives us much hope that change is possible. Thanks again!
I am happy to come across this page, as I am just entering my journey in researching PFAPA, as we are fairly certain this is what our 4 year old son has. Being new to this, I am loving all of the advice and support here, but feel compelled to give all of you a bit of support myself from a different perspective. We actually made the decision from birth NOT to vaccinate. Neither of my children have ever received a vaccination, and this still occurred with one of them. I want to stress I am a HUGE advocate for not vaccinating and am certainly not saying this cannot be triggered by vaccines. In fact, I was just saying how thankful I was that we didn’t vaccinate, as I am assuming it could have made this so much worse or caused an even scarier vaccine reaction if he is in any way predisposed to auto inflammatory issues! My only point is to just give all of you who did decide to vaccinate, and are now facing PFAPA, a virtual hug and the comfort of knowing that there are people out there experiencing this without the trigger of a vaccine, and not to be hard on yourselves feeling like without vaccinating, “maybe this wouldn’t have happened”. I know as a mother, we only want to do the very best by our children. All of you are amazing.
Thanks Kristen, I needed to hear this tonight.
Thank you so much! What a thoughtful response. Hug appreciated!
My son suffered from PFAPA until he was five years old. I believe it started around age one. We had a very long road to a diagnosis. He had a T&A at age 5 and thankfully it worked. He is now 12 years old and last year needed his eleven year boosters. I was hesitate, fearing PFAPA could return. We went ahead with the vaccinations. Within a week my son had a fever, bodyaches,and mouth sores. His fever was not high, stayed around 101 (funny how we PFAPA mom’s don’t blink an eye at that). His symptoms lasted 4 days and did not return. It was a one time thing but I believe it wasn’t just a virus. Even though my son didn’t fever after his T&A I still felt there were remnants of PFAPA. He still gets frequent headaches. He still gets occasional mouth sores. We no longer get 105 fevers every two weeks, so we can handle the rest.
It’s nearly 3 am and I am up with my sweet 5 year old boy who keeps calling out for me in his fevered delirium. I can’t tell you how comforting it has been to read this. I have been telling my doctors for 3 years that his recurrent fevers were from his vaccine. I have struggled with the doctors because they insist it’s an infection and keep giving him high doses of antibiotics. At least now I can be armed with something that might keep him from having to endure that.
As for Sarah, your question about whether you should continue vaccinating. I want to express that I did choose to keep vaccinating and as a result this is my third vaccine injured child. My first had a severe reaction that developed into epilepsy, and my second has terrible skin lesions and digestive disturbances that I cannot seem to cure after 4 years of trying. If I were able to give advice to my younger self, it would be to quit while I was ahead. Although without my current personal body of evidence against vaccinating for my own kids, I’m not sure I would have been convinced either, as I was a strong proponent of vaccines as well. I wish you the best in your difficult choice. .
For the record, I have had enough. I won’t be vaccinating again.
I am so sorry you are going through this. We have decided with support from her pediatrician to cease all remaining vaccines. She is medically exempt. We cannot risk the return of pfapa. Please let me know if there’s anything I can do–if not just offer support. Prayers for your little one!
That’s great news. I was given medical exemption for my epileptic daughter by my pediatrician, but it has only been the health nurses who have encouraged me to stop vaccinating my fever guy. The doctor still theorizes infection every time. He goes through all possible invisible infections and whatever theory he was on on day 5 (when it goes away) is the diagnosis that goes into his chart. So his chart looks like a dozen different infections and I have to convince the new ER doctor (or remind the family doctor) that “actually, no, all those episodes were completely identical and no evidence of infection was ever found. Only hypothesized”. But the fevers are just so scary and severe that they can’t help themselves and they start plying it with antibiotics just in case. And it was hinted to me that if it came down to it, my doctor would call in social services if I really tried to refuse antibiotic treatment.
But with PFAPA describing him so perfectly I will have some direction to give my doctor- which is all he really needs. He is a good man and a great doctor. I think we can finally end the medical confusion.
Rachel, there is a great FB group ( PFAPA child) with lots of resources and support and ideas on how to ‘educate’ your health care provider on PFAPA and avoid unnecessary antibiotics. Plus, it is a wonderful community of parents who understand your experience. Check it out!
Hi Sarah,thank you so much for sharing your research. Can you please send me a copy of all your research data to date? I am very interested in your findings.
I haven’t collected any data, only searched the literature which you see reviewed in this article. Check out some of the studies I cited.
Thank you for this interesting article. I had always wondered if there perhaps was a cause and effect relationship with vaccines here, as my oldest son presented his first PFAPA fever several weeks after receiving his first set of vaccinations. They were rushed because of an overcrowded clinic and scheduled closely together at 3,4 and 5 months old (this could have been the environmental trigger…) At 1 year after receiving his MMR, the fevers increased in intensity, lasting 4-5 days, not responding to fever reducers, and were accompanied at each episode with a febrile seizure. Over the next year and a half, our doctors, suspecting a virus treated him with 5 separate courses of antibiotics, none of which had any effect. The fevers continued each 4 weeks. After one particularly bad case with two febrile seizures that led to a a temporary paralysis of his left arm, he had a long stay at the Calgary Children’s Hospital. They could find nothing wrong and we were sent home. Later that year, an infectious disease specialist who had just learned of PFAPA was able to diagnose him. At this point we were weighing either surgery or steroids as treatment options.
Amazingly, at exactly the same time we came in contact with a specialist upper cervical chiropractor who had learned of our case, and thought he could help. With some “fear and trembling,” not ever having received chiropractic care ourselves, we decided to try this method first.
This ended up being a life changer for us. The chiropractor was able to identify that our son’s atlas (C1) was twisted and putting pressure on his brain stem. Immediately following treatments, the fevers came farther apart and were markedly less severe. Several months later they had stopped altogether and only presented if he had a hard fall playing or riding his bike. On these occasions the fever/swollen adenoids would present within 24hrs. We would take him immediately into the clinic, often with a high fever/vomiting, and he would respond immediately to the treatment.
Our son celebrated his 9th birthday two days ago and has been fever free since he was 3 1/2.
We have since moved, but our original chiropractor has been open and willing to share the specifics of his treatment with several other chiropractors around the world who have been treating PFAPA patients. We are so thankful!
Jessica s. -Thank you so much for your comment! I have been trying to learn as much as possible @ pfapa…my 16mo.old has been suffering the same symptoms for about 6-7 months now. Would you be able to send any more info on your chiropractor/treatment plan? I am very interested in learning more! Thank you!
I’m very interested too! Thank you so much for posting your story here, my son is 3 1/2 years old he’s been with PFAPA since he was 2 months old. I’ve tried everything and now thinking in tonsillectomy… I’ve just found your post and I think i have to try that treatment too. Please let us know a lot bit more about Your treatment
I think my 4 year old has this too. She has been getting fevers every 4 weeks for months and before that it was every 6 weeks. 105 degrees and vomiting with sore throat ever single time. I’d like to avoid a tonsillectomy but am hesitant about using a chiropractor on a child. Is it more manipulation or do they crack the spine? I’d love some more details.
Thanks very much!
Hi Jessica S.,
I am wondering if you could put me in touch with your chiropractor? I have found a chiro in New England, and during the first session she discovered my 5 yr daughter’s neck was extremely tight, (in fact she had never seen a child’s neck this tight). I would love to have her get in contact with someone who has experience in dealing with Pfapa. Feeling hopeful.
I would like to add to the discussion here that this is my second child with Pfapa. My son is now 8, and had it for several years starting at age 4. We did the specialist thing, received the diagnosis of Pfapa, turned down the steroids, and the surgery. At age 7, after a particularly bad episode (fever spiked to 106), and an ER visit, the fevers ceased.
It seems obvious in our case that there is a genetic component. Incidentally my husband also had weird fever episodes as a small child, and grew out of them around age 8 or 9.
In both cases with my kids the Pfapa began after a round of vaccinations. The doctors are not willing to make this connection and I understand why. Unfortunately none of this is being documented or studied and we are left to find solutions through anecdotal experiences from other parents.
I offer this in case it might help others in their research.
I wanted to leave an update for those parents who are obsessively reading through posts looking for answers (as I was).
We had my daughter’s neck adjusted by the chiropractor without her having any knowledge about the Pfapa. She told us her neck was extremely tight. We had her adjusted every week. She had an episode five weeks later, (normally they were two to three weeks apart)during which her neck was extremely tight again. It has now been eight weeks since that episode. I am reservedly hopeful, trying to not get too excited yet.
I was nervous about the adjustments, and I do not enjoy watching her get adjusted. But it is SO much better than watching her suffer with the fevers. In our case the fevers were quite rough on both of my kids, basically they lie in bed and feel miserable, unable to do anything for three or four days.
So I offer this as yet another voice hailing the benefits of a chiropractor. I will post again in the future to let you all know if it continues.
The Pfapa was really rough on the whole family. I developed stress induced insomnia which caused a whole rash of other health problems (during episodes I would sleep with her and listen to her breathing all night). We became unable to plan a lot of away from home adventures for fear of having an episode away from our pediatrician, (I still suffer from the fear of this). And yet we would tell ourselves that, as the infectious disease specialist told us, Pfapa is largely benign, and there are much worse things. Even still it was grueling when it was happening. I know I don’t have to explain all of this since you know it first hand. I worked very hard to be in the moment and really enjoy the non-episode times, and to accept the episodes when they were happening. In between we lived with the hope that each episode might be the last. And I still do. There is hope.
my 4 year son has same problem. we are so tensed and depressed about our only child.
please elobrate how it can be treated by chiropractic.
We don’t fully understand why the chiropractic works. Somehow it reduces the inflammatory response in the body, (something to do with the Vagus nerve perhaps?).
We seem to have my daughter’s Pfapa under control now. My 10 yr old son who we believed had outgrown it, has been having episodes again. This is after he received the chicken pox vaccination. Our doctor was very adamant that he get it because chicken pox in older children can be very severe. I did not want to do it, but I also did not want to live with the stress of fearing chicken pox, so we went ahead. Regretting that now. The episodes are slightly different now, low fever (100) with stomach pain and nausea & vomiting for three days, but this time there is no schedule that I can figure out (three episodes in 6 months). I only recently made the connection to Pfapa as I read years ago that some kids have more gastrointestinal issues with it. So we are going to start him with the chiropractor this week. I have also read that low vitamin D can also be a factor, so we will try that too. I offer this to any of you who are also looking for answers. The doctors only offer us drugs, and surgery without really looking at it in a wholistic way. And they still will not entertain the idea that there is a link to the adjuvants/vaccines. In this case of my family there is a definite correlation. I believe the resurgence of my son’s Pfapa after the chicken pox vaccine proves it, (first episode was 24 hrs after the vaccine). And yes I am sure that there are many other things that can turn the Pfapa switch on. But until there are more studies we may never know. The specialist we were taking my son to when he was little, after the episodes slowed then eventually stopped, revoked her diagnosis of Pfapa saying “It doesn’t just go away at age six.” They also said they don’t really know what causes it. What I know is that they offered us no help and we were left on our own.
On a personal level I do not feel confident about the tonsillitis surgery because I have read many accounts of it not working. That combined with the fact that we now know that tonsils are extremely important to the immune system. That said, there comes a point were you will try anything.
Thanks for the insightful article & scientific approach Sarah. I found this really encouraging. My four year old son is likely PFAPA & we are trying to decide on best approach at this time. With respect to vaccines, I’ve personally found that he’s had an extremely exaggerated response to his shots, where I can see quite plainly that his immunity and emotional state are highly affected for months afterwards. Perhaps this was one of the triggers for him. I hadn’t considered that until now. We’re also investigating whether there are dietary triggers at play in his instance even though I know the literature currently suggests otherwise. He’s been affected with PFAPA since 18 months of age & has had episodes every 28 to 35 days for the past three years. We recently took him off gluten however & he went 60 days fever free until we had some slip ups occur with his diet. Just thought I’d share… thanks again.
I’m so glad diet is helping! That’s wonderful! Best of luck.
An encouraging article to say the least! I personally am a vaccinating mommy, but a huge supporter of “what mommy thinks best”. We are waiting to take our 4 year old to the ID specialist and immunologist to begin testing for PFAPA. She has had 5 fevers sine June 21, lasting 5-7 days. Her last 4 fevers have been 15 days apart. The internet has provided so much information and I have only just begun questioning the role vaccines may be playing in her episodes. What advice would you offer, as far as what questions to ask, when we meet with these specialists? I want to be the best advocate I can be for her, so any help would be so incredibly appreciated.
I find this fascinating. I have MTHFR defect, which is what led me to look into epigenetics for my second child. I vaxed them both – the first child got horrible tonsillitis at 4 – and if the tonsils hadn’t been infected everything else matched PFAPA, we did the T&A and her snotty symptoms started to return but not fever within 6 months. We took out gluten for another family member and her sinus issues resolved as did my lifelong sinus infection issues and most of my youngest’s eczema. Then my youngest got her 4-5 year old boosters right before school last year and suddenly bizarre high fevers. my doctor hasn’t believed me all year. Her tonsils aren’t swollen. So we looked up a new doctor who immediately put her on some Vitamin D and a few immune boosters – this weekend her fever was much better (as scheduled but maxed at I think 102) and only lasted about 2 days. She ordered blood work so I think she’d onto PFAPA. I’m calling her this week. Your article is exaclty what I was in the middle of compiling. I hope you keep up on research – I will too. I’m hoping the gene expression can help avoid surgery because I am sure that if the genetic expression is the case, there will be a recurrence in my oldest. I hope AncestryDNA and 23andme and the other places that will give raw data will also include this so we can start out by having these younger ones spit instead of get bloodwork done. I am waiting about 3 weeks til the next fever to get her bloodwork done. Please keep updating this article!
Very interesting article – thank you. I have identical twin girls – one with PFAPA and one without. The child with PFAPA was accidentally given a Hepatitis vaccine intended for another child in the nursery ward of the hospital. She was subjected to an unneccesary vaccine within a few hours of life and I have always suspected that this may have been a trigger for her illness. She is 8 years old now. We had her tonsils removed at 33 months and she was fever-free for 5 1/2 years. Unfortunately, they seem to have returned within the last six months and I am at a loss as to what to do – especially now that she is school age. Good luck with your daughter – I hope she remains fever free!
My son had 105 degree fevers every two weeks for two years. It started around six months of age, which is about the time he received his second round of shots. PFAPA also runs in our family. He had a T&A a year ago, and it stopped his fevers. However, after reading about how many fevers come back after a trigger (whether it be from vaccinations or illnesses), I am scared to give him his 5 year old shots. What conclusion have you come with your child’s booster shots?
Thank you for your thoughts everyone. To be clear, I recognize and state in the article that vaccinations may be one of many triggers for PFAPA. Certainly PFAPA happens in non-vaccinated children, and there may be other triggers such as allergies, toxic exposure, previous viral illnesses, etc. I do believe there are many forms of PFAPA, and in my newer research I’m wondering if the kids who respond to the T&A are likely ASIA kids, as we are simply removing the inflammatory source (as long as no further exposure to the toxic adjuvant is introduced) for kids who’s triggers are allergies and are in constant contact, perhaps that’s why they see symptoms return after T&A. That is all speculation, however.
Sarah I am writing from New Zealand and I wonder if you would let me have an email contact. I am interested in following up with you re PFAPA.
everyone loves to blame vaccinations because they’re an easy target. My daughter has PFAPA as did her aunt, most likely my husband and her grandma and great aunt. The grandmas didn’t feel the effect as at the time a tonsillectomy was standard practice. the Dr’s here were not very informed and it took a pediatric immunologist to diagnose her correctly after two years of being called an overly reactive mum. We don’t consider that many cases went undiagnosed because of the old tendency to just remove the tonsils
Very interesting article. To be upfront I’m an anti-vaccine Mom. None of my kids have been immunized. So with that being said, I’ve just recently come to realize that my youngest son probably has PFAPA. He will be 19 next month. I can’t tell you how many times I would take him to the Doctor’s starting when he was an infant with the typical symptoms of PFAPA. Every time they would tell me it was viral. Nobody else in the family would be sick. A few months before he turned 16 I finally decided to have his tonsils removed (they were always enlarged, with big holes in them and white) hoping that maybe this would do the trick for him. But unfortunately no that was not the case. When he was younger it looked like the fevers were becoming less and more time in between episodes. That was happening until he was in 5th or 6th grade. In 5th grade he started in a new school that he was highly allergic to. His nose would be streaming all day long in the school. After a year and a half I had to pull him out as his health was deteriorating so much. At that point his digestive system was pretty much shut down and he started having more of the fever attacks.
So while I have no doubt that vaccines may be what starts PFAPA, it clearly isn’t the only thing as my son is not vaccinated and for him, having his tonsils out did not stop it either.
I’m going to be taking him to a specialist as soon as possible to finally get him diagnosed.
I hope someone comes out with a good alternative type of treatment soon.
Good luck everyone!
I’m glad you found something that is currently helping your child. I am all for alternative therapies (if they work). We tried several with no success. Just to be clear on that statistic:
The statistic is a meta-analytic one, meaning it has been generated by combining the effects of several different studies to give an overall picture of how effective the surgery is. So it takes into account the fact that some studies found 100 percent resolution and some have found 40 percent, etc. I personally do believe T&A can be a cure for many children. Our bodily systems have plasticity and can make adjustments. Our gene expression can be altered by anything from biological agents to interactions with others in our environment. I also believe there are different classifications of PFAPA that may respond differently to different treatments. Some may relapse and remit while others resolve completely.
Thank you for your concern. I have read about the link between these issues and anesthesia. However, I feel that the risk was worth the benefit in our case. Luckily, my daughter seems to be doing very well and shows no signs of trouble at the moment. She is thriving in every way.
We just took my 5 yr old son to our pediatric ENT and he’s pretty sure he has PFAPA, fever and swollen lymph glands every two weeks. When doing the Tonsillectomy is it best to remove the whole tonsils or have you had any research that shaving them down can help. My oldest who does not have PFAPA had her shaved for sleep apnea at 8, and it was a 2 week recovery. Just worried to make the wrong choice on whether to shave them or remove them totally on my 5 year old PFAPA son.
Great article and while I agree with most of your points (especially “I do believe, however, that vaccines were the environmental trigger that likely caused the gene(s) expression to be altered”) I disagree with the T&A info. There is no “cure” for PFAPA and no one knows why the T&A works on some children. I have heard the 80% statistic, but have also seen 60%, 40%, etc. There is just not enough information in my opinion to subject my child to a major surgery if I don’t know why or if it will work. We have had success with chiropractic adjustments and supplements. My 9 year-old hasn’t had a full blown episode since we started having him adjusted 8 months ago. I don’t dare say he is “cured”, but we have certainly found a safe treatment that has given us back our lives. I hope more of us continue to share our stories and inspire each other to continue researching and helping others. Thank you so much.
I am glad that the child is better. Now this person needs to watch for add, and learning disorders, which happen to children who are given anesthesia. This happen around pre puberty ages. Good luck.