Sorry to hear your son is suffering right now.
That must be stressful for him, and you and your wife. I imagine sleep and school are disrupted?
I understand then, why "a quick surgery" would be appealing - you have an answer to end everyone's stress and suffering.
Yeah, my brother had that but that was back in the 80s when this was unkown. They would just take out the tonsils because they though it was repeated strep infections.
My mom had a tonsillectomy, my dad too. My wife's mom, as well. All of them could have easily had PFAPA.
Edit: my wife too.
Lots of people get their gall-bladders removed. It's a "quick standard operation with no side effects". Except the effects of it are life altering, as you can no longer digest fat (or absorb fat soluble vitamins) without continual external digestive support.
The medical system will not tell you of the long term effects.
If someone is threatened by cancer - sure cut it out. But this isn't that.
What does the research say about tonsillectomies?
In this study of almost 1.2 million children, of whom 17 460 had adenoidectomy, 11 830 tonsillectomy, and 31 377 adenotonsillectomy, surgeries were associated with increased long-term risks of respiratory, infectious, and allergic diseases. Although rigorous controls for confounding were used...
pubmed.ncbi.nlm.nih.gov
Association of Long-Term Risk of Respiratory, Allergic, and Infectious Diseases With Removal of Adenoids and Tonsils in Childhood
Abstract
Importance: Surgical removal of adenoids and tonsils to treat obstructed breathing or recurrent middle-ear infections remain common pediatric procedures; however, little is known about their long-term health consequences despite the fact that these lymphatic organs play important roles in the development and function of the immune system.
Objective: To estimate long-term disease risks associated with adenoidectomy, tonsillectomy, and adenotonsillectomy in childhood.
Design, setting, and participants: A population-based cohort study of up to 1 189 061 children born in Denmark between 1979 and 1999 and evaluated in linked national registers up to 2009, covering at least the first 10 and up to 30 years of their life, was carried out. Participants in the case and control groups were selected such that their health did not differ significantly prior to surgery.
Exposures: Participants were classified as exposed if adenoids or tonsils were removed within the first 9 years of life.
Main outcomes and measures: The incidence of disease (defined by International Classification of Diseases, Eighth Revision [ICD-8] and Tenth Revision [ICD-10] diagnoses) up to age 30 years was examined using stratified Cox proportional hazard regressions that adjusted for 18 covariates, including parental disease history, pregnancy complications, birth weight, Apgar score, sex, socioeconomic markers, and region of Denmark born.
Results: A total of up to 1,189,061 children were included in this study (48% female); 17 460 underwent adenoidectomy, 11,830 tonsillectomy, and 31,377 adenotonsillectomy; 1,157,684 were in the control group. Adenoidectomy and tonsillectomy were associated with a 2- to 3-fold increase in diseases of the upper respiratory tract (relative risk [RR], 1.99; 95% CI, 1.51-2.63 and RR, 2.72; 95% CI, 1.54-4.80; respectively). Smaller increases in risks for infectious and allergic diseases were also found: adenotonsillectomy was associated with a 17% increased risk of infectious diseases (RR, 1.17; 95% CI, 1.10-1.25) corresponding to an absolute risk increase of 2.14% because these diseases are relatively common (12%) in the population. In contrast, the long-term risks for conditions that these surgeries aim to treat often did not differ significantly and were sometimes lower or higher.
Conclusions and relevance: In this study of almost 1.2 million children, of whom 17,460 had adenoidectomy, 11,830 tonsillectomy, and 31,377 adenotonsillectomy,
surgeries were associated with increased long-term risks of respiratory, infectious, and allergic diseases. Although rigorous controls for confounding were used where such data were available, it is possible these effects could not be fully accounted for. Our results suggest it is important to consider long-term risks when making decisions to perform tonsillectomy or adenoidectomy.
Doctors have been prescribing tonsillectomies for decades for those with recurrent sore throats. However, health experts now know that the long-term risks of this procedure are a detriment to overall immunity and exceed any short-term benefit....
www.sott.net
Doctors have been prescribing tonsillectomies for decades for those with recurrent sore throats. However,
health experts now know that the long-term risks of this procedure are a detriment to overall immunity and exceed any short-term benefit.
Previous research at the University at Buffalo has shown that removal of tonsils and adenoids results in less fidgeting and other non-exercise motor activity which results in weight gain.
In
another study involving 300 children aged 2 to 8 advised to have their tonsils out, those who avoided surgery had fewer annual visits to doctors and lower resulting medical costs due to fevers and throat infections.
A new study provides evidence that a critical type of immune cell can develop in human tonsils. The cells, called T lymphocytes, or T cells, have been thought to develop only in the thymus, an organ of the immune system that sits on the heart.
The study, led by researchers at the Ohio State University Comprehensive Cancer Center -- Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC -- James), could improve the understanding of T-cell cancers, autoimmune diseases and the importance of first line of immune defence mechanisms such as the tonsils.
The study identified T cells at five distinct stages of development in the tonsil. These stages, identified using molecular signposts on the cells, were very similar to the stages of T-cell development in the thymus, although some differences were found as well.
The study also discovered that the cells develop in a particular region of the tonsil, in areas near the fibrous scaffold of the tonsil, a very sensitive and important area for primary immunity.
The findings are published in the
Journal of Clinical Investigation.
"We've known for a long time that a functional thymus is necessary to develop a complete repertoire of T-cells, but whether a T-cell factory existed outside the thymus has been controversial," says principal investigator Dr. Michael A. Caligiuri, director of Ohio State's Comprehensive Cancer Center and CEO of the James Cancer Hospital and Solove Research Institute.
"I believe our study answers that question. It is the first report to describe a comprehensive, stepwise model for T-cell development outside the thymus."
It also raises a number of questions. Caligiuri notes that it's still unclear whether T-cells that develop in the tonsil also mature there or whether they leave the tonsil to mature elsewhere. Since the complete implications of this phenomenon for human health and disease are not entirely known, removing the tonsils should certainly be considered as a very last resort since their could be considerable long-term implications.
Caligiuri, McClory and their colleagues conducted the study using tonsil tissue obtained from children undergoing routine tonsillectomy at Nationwide Children's Hospital in Columbus, and thymic tissue obtained from children undergoing thoracic surgery.
Using the molecular features of T-cells as they develop in the thymus, the researchers identified five populations of maturing T cells in the tonsils. They found, for example, that the first two of those groups resembled cells of the earliest stages of T cells that developed in the thymus, while cells in the fifth group were similar to nearly mature T-cells in the thymus.
They also showed that all five of the cell groups had the capacity to develop into T cells in laboratory tests, and that the first four populations had the capacity to develop into immune cells called natural killer cells.
"Overall, our work suggests that the tonsils serve as a T-cell factory, along with the thymus," Caligiuri says. "Next, we need to learn what proportion of T-cells is derived within the tonsil compared with the thymus."
Ok - so what can you do?
If the stress and suffering of you all is great (I assume it is?), then work on that first.
When people are stressed (especially about kids) they want certainty. The surgery gives you certainty - a definitive 'end' of the suffering. Except it's not actually an end, based on peoples traumatic results and the above research.
So it involves facing some uncertainty head on. Of being strong for your wife and child by taking on that burden. And as such, managing your own stress so you can do that well.
There is a lot of mutated viruses around right now, and, IMO, I would wait with tonsillectomy and focus on building the immunity (lots of C, D, Zink, Magnesium if he has joint pains, propolis spray if he has a sore throat,....) and sorting out the diet (gluten, diary, sugar).
Is this something you can try?
Propolis can provide some good relief to inflamed throats relatively quickly.
The other supplements will take time, but will help.
The removal of gluten, dairy, sugar may cause short term suffering - but will likely 'stop the immune system overreacting' in the future.
It's not an infection actually, it's the immune system overreacting.
A lot of the health research on the forum is about exactly this topic. 99% of the time it's the immune system reacting to something real - and then continuing to 'overreact' going forwards.
It's the definition of auto-immune disease.
The simple test for this will be, that your son will continue to have immune overreactions going forward, with or without his tonsils.
Just like many of us have posted about on the forum.
Joint pain, stomach pain, skin issues, cognitive issues, allergies etc
After multiple decades of many of us suffering, their are many accounts of success and relief from suffering posted by people who gut out gluten, dairy and sugar.
All those that gave these up, also did well with corticosteroids - because the corticosteroids lower inflammation. That inflammation was coming from eating the wrong food.
As you can see, people (with or without tonsils) who have PFAPA are still having other symptoms.
itsnotjustavirus.com
Co-Existing Conditions
The first thing I want to mention here is that your child might actually have some of those conditions listed above along with their PFAPA. What I have learned is there is a lot of gut dysfunction that seems to have gone with my own son’s PFAPA.
At nearly 2 years old after one course (which we have never revisited the use only 2 other times for strep) of antibiotics, he developed c diff. This is a serious, life-threatening, bacterial infection of the digestive tract often caused by the use of antibiotics. This is highly unusual for a near 2-year-old.
I always assumed his gut just must have been compromised and never put too much thought into WHY (other than blaming myself for giving him antibiotics!). However, the more I have learned about the biome and the gut and the connections to our body the more I have put the pieces together.
My son’s PFAPA started at around 8 months old so he was already having fevers before his c. diff infection. Unfortunately, but fortunately, I guess, he refused the awful tasting medication for c. diff so we went therapeutic level probiotics and cleared him slowly of the infection (my own doing). The years following we also added supplements of b vitamins and fish oils. He took probiotics for a long time and we were able to spread the fevers out. I have talked about this in other posts and our successes (and failures).
Why do I talk about this now… because now that he is 9 years old and can help me track symptoms and look at behaviors we have located the issue, which aligns with this reference book above and we are targeting our diet and work and it’s WORKING!
What I Learned About My Son’s Gut
I used my FNTP questionnaire to ask my son questions about his gut, and I also answered some of them from the history I had for the remaining body systems. As an FNTP I look at the entire digestive tract, healthy fat use in the body, sugar handling, vitamins and minerals and the adrenals. We also see if there are symptoms in other body systems like bladder/kidney, cardio, immune and more. My work is targeted at the systems that show the most imbalance through nutrition, supplement and lifestyle changes. Learn more about it
here.
My son’s gut showed the small intestine was in serious need of balance and support! I had a hunch based on what I had been learning about the gut biome and its connection to disorders. I will admit there is NO specific research on the biome and PFAPA (yet!).
We went after the gut! I now had a targeted approach. I knew for sure the dietary changes of eliminating most grains and focusing on tubers, vegetables, meats and healthy fats with nuts was the RIGHT THING! We had that pretty much down. Then we continued with the omega 3 supplement I have shared about, the B vitamin complex, but I added back in PROBIOTICS! I had him start with the children’s version I had on hand, and added in a therapeutic level from the line I work with. I also decided to add in some evening primrose oil with his omega 3 for balance.
** Be sure to talk with your child (or your own) physician before using any type of supplement. If you would like more specific information about this or to look at your own child’s system to see what is out of balance see the form below. You should not attempt to find correct dosage or supplementation without the help of a professional.
What happened?
No episode the following month (or since)! He has been eating better, less picky, looking forward to meals, as well as no symptoms of PFAPA! As ALWAYS, I am hopeful. Do I know FOR SURE – nope I don’t. But what I know is that any extended time without PFAPA episodes is a great time!
Maybe you can do some blood tests for celiac/food allergies too?
What can we learn about PFAPA?
pmc.ncbi.nlm.nih.gov
Aphthous stomatitis is a common feature of both celiac disease and PFAPA syndrome.
Respiratory infections and oral thrush were more common among the PFAPA patients than controls.
That is - secondary opportunistic infection. Meaning the immune system is struggling.
Which leads too:
Periodic Fever, Aphthous Ulcers, Pharyngitis and Adenitis (PFAPA) Syndrome’s etiology is not well understood. The objective of this study is to explore the association between vitamin D level and PFAPA syndrome. A systematic review of all ...
pmc.ncbi.nlm.nih.gov
The Association Between Vitamin D Level and PFAPA Syndrome: A Systematic Review
Sara A Faydhi 1,
Hala M A Kanawi 1,
Talal Al-Khatib 1,
Faisal Zawawi 1,✉
- Author information
- Article notes
- Copyright and License information
PMCID: PMC9895145 PMID:
36742791
Periodic Fever, Aphthous Ulcers, Pharyngitis and Adenitis (PFAPA) Syndrome’s etiology is not well understood. The objective of this study is to explore the association between vitamin D level and PFAPA syndrome. A systematic review of all publications addressing the association between vitamin D level and PFAPA syndrome prior to May 2019 was conducted. Data were collected from online medical databases namely, PubMed, Ovid Medline, Embase, Cochrane Library, Google Scholar, and Scopus. The review adhered to the PRISMA statement and was performed in 3 main phases; an initial screening review of abstracts was performed, followed by a detailed review of full articles based on inclusion and exclusion criteria, and lastly a final review to extract data from selected articles. 3 prospective review-based and one case report articles were included with a total of 281 patients, 98 of whom were cases of PFAPA, while 183 were controls.
Vitamin D levels were deficient in 27% of PFAPA group as compared with the control. Vitamin D supplementation was given as an initial treatment in 25/98 of the patients. Only 1 patient received it as a second treatment. After vitamin D supplementation, a marked reduction of the number of febrile episodes and modification of the mean duration were recognized. There may be an association between Vitamin D deficiency and a higher frequency of PFAPA episodes. Vitamin D supplementation in children with PFAPA may reduce the frequency of episodes and help manage the condition.
So we're back to adding vitamin c, d and zinc for immune support.
Vitamin d is depleted when we suffer illness and/or stress. Without it, the immune system can indeed overreact (i.e. not calm down) - but it also can't fight things off.
Low vitamin d levels means opportunistic infections can get a foothold.
