My son has PFAPA syndrome

[Wandering Star]

Tonsils are not the amygdala

I search tonsils in english:

Tonsils are two lumps of lymphoid tissue located at the back of the throat that act as a part of the immune system, trapping germs like bacteria and viruses that enter through the mouth or nose. They are a key part of the body's first line of defense against infection, particularly in children, though their role is less critical as the immune system develops.

 

[Wandering Star]

In spanish are adenoides o vegetaciones.

When I was a child, they removed them to me.

They tied me to a chair with a sheet so I couldn't move, and without anesthesia, the doctor inserted a metal device into my mouth and cut something.

I bled a huge stream of blood from my mouth onto the sheet that imprisoned me.

Then he repeated the procedure, and I bled again.

In short, they tortured me.

I continued to suffer from allergies and colds constantly, and generally suffered from poor health throughout my childhood.

I suppose the procedure is better in this modern age.

 

[iamthatis]

So you're saying that PFAPA is not a real thing? We've already ruled out viral and bacterial infections so I don't know what else it could be. The steroid shot would not have helped if it wasn't PFAPA. That's the main diagnostic method for this condition.

And just to set the record straight, all of the many doctors involved were quite good and thorough and my wife and I were involved every step of the way.

Sorry to hear about your son. may I ask how you ruled out bacterial and viral infections? I've been reading a lot about diagnosis and treatment of stealth, chronic infections and they can be pretty hard to find.

 

[Yas]

I'm sorry that your son is going through this. As you can see it seems to be fairly "common" as you've had that in your family and some here say they've had it too.

It's interesting, I've had something similar growing up and I remember doctors saying that it was an overreaction of my immune system but I don't remember that specific name. I specifically had periodic aphthous stomatitis, pharyngitis and adenitis but not periodic fever, so I don't know if it's the same thing. At the time, many doctors wanted me to get surgery but we had another very good paediatrician who said that it was going to stop eventually. It did, I don't have that now although my impression was that it turned into periodic sinusitis and rhinitis.

In terms of symptoms management, that doctor didn't prescribe steroids but I remember my family using something topical for the aphthous stomatitis. It was a liquid that one could put on the sore spots and it would calm the pain, I'll ask if they remember what it was. Nowadays, if I have a lesion in my mouth or inflammation of the gingiva or a sore throat, I use sodium bicarbonate and it works like a charm to heal and calm the pain, so perhaps that's something you can try. I just put a teaspoon of sodium bicarbonate on a small cup of water and use it as a mouthwash and also to do gargles with it.

Adenitis was another thing, I remember it would make it difficult to breathe through the nose so I was always breathing through my mouth which messed with my teeth and sleep. The doctor prescribed nebulization for this. Every night I had to nebulize for a 10-15 minutes before going to bed and then also do some massages on my nose and cheeks with an eucalyptus ointment. That was super helpful and even nowadays when I have rhinitis/sinusitis I use a nebulizer and some essential oils to massage the area where the adenoids are, which really helps clear the airways before bed. I do the nebulization with hydrogen peroxide and distilled water or a saline solution, there's some info about it here: DMSO - Dimethylsulphoxide

I've also used a neti pot to clean the airways with saline solution and it's helpful but I find that a bit more uncomfortable and messy than the nebulization.

After a while, I realized that these symptoms usually have to do with allergic reactions. For example, dairy is particularly quick in bringing sinus symptoms, so eliminating even butter helped immensely. I say this because perhaps there's something triggering the inflammation and finding what that is may help reduce the symptoms.

Yes, it's sort of "high maintenance", so I would understand if you rather go through the surgery. As you also know, it is a pretty common surgery and most people seem to do just fine after it.

 

[RedFox]

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?

Association of Long-Term Risk of Respiratory, Allergic, and Infectious Diseases With Removal of Adenoids and Tonsils in Childhood - PubMed

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​

• PMID: 29879264
• PMCID: PMC6145787
• DOI: 10.1001/jamaoto.2018.0614

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.

Why You Should Never Remove Your Tonsils

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

Why You Should Never Remove Your Tonsils​

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.

https://www.reddit.com/r/Autoinflammatory/comments/1b564u0/does_diet_make_much_difference_pfapa_25yr

As you can see, people (with or without tonsils) who have PFAPA are still having other symptoms.

The Gut, Digestion and PFAPA – It's Not Just a Virus

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?

Periodic fevers associated with celiac disease and marked increase of NK cells - PMC

pmc.ncbi.nlm.nih.gov

Aphthous stomatitis is a common feature of both celiac disease and PFAPA syndrome.

https://www.clinexprheumatol.org/article.asp?a=12210

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:

The Association Between Vitamin D Level and PFAPA Syndrome: A Systematic Review - PMC

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.

 

[Revolucionar]

Sorry to hear about your son. may I ask how you ruled out bacterial and viral infections? I've been reading a lot about diagnosis and treatment of stealth, chronic infections and they can be pretty hard to find.

To clarify, he's only had two episodes of pfapa so far. He's a very healthy boy outside of these episodes. All, except one, test for viruses and bacteria were negative, his bloodwork didn't really indicate an infection other than very high CRP, but that didn't come with other inflammation markers. He initally had a barely positive quick test for strep but the antibiotics had absolutely no effect. Once he got the steroid shot in hospital he fully recovered within 2 or 3 hours. On the second episode, we checked strep and it was negative. He had the exact same symptoms as before. We gave him another steroid shot and again he fully recovered within 2 or 3 hours without the symptoms coming back for a couple days now. All of that is very typical pfapa and nothing else as far as we know. We need to do another CRP check tomorrow to confirm that it went down. So it's not that we're absolutely certain that there was no infection, but we can be sure that the infection didn't cause the main symptoms of high fever, sore throat and swollen glands, because the steroids wouldn't have worked in such a way. He's been feeling perfectly fine since that last shot.

 

[Revolucionar]

I'm sorry that your son is going through this. As you can see it seems to be fairly "common" as you've had that in your family and some here say they've had it too.

It's interesting, I've had something similar growing up and I remember doctors saying that it was an overreaction of my immune system but I don't remember that specific name. I specifically had periodic aphthous stomatitis, pharyngitis and adenitis but not periodic fever, so I don't know if it's the same thing. At the time, many doctors wanted me to get surgery but we had another very good paediatrician who said that it was going to stop eventually. It did, I don't have that now although my impression was that it turned into periodic sinusitis and rhinitis.

In terms of symptoms management, that doctor didn't prescribe steroids but I remember my family using something topical for the aphthous stomatitis. It was a liquid that one could put on the sore spots and it would calm the pain, I'll ask if they remember what it was. Nowadays, if I have a lesion in my mouth or inflammation of the gingiva or a sore throat, I use sodium bicarbonate and it works like a charm to heal and calm the pain, so perhaps that's something you can try. I just put a teaspoon of sodium bicarbonate on a small cup of water and use it as a mouthwash and also to do gargles with it.

Adenitis was another thing, I remember it would make it difficult to breathe through the nose so I was always breathing through my mouth which messed with my teeth and sleep. The doctor prescribed nebulization for this. Every night I had to nebulize for a 10-15 minutes before going to bed and then also do some massages on my nose and cheeks with an eucalyptus ointment. That was super helpful and even nowadays when I have rhinitis/sinusitis I use a nebulizer and some essential oils to massage the area where the adenoids are, which really helps clear the airways before bed. I do the nebulization with hydrogen peroxide and distilled water or a saline solution, there's some info about it here: DMSO - Dimethylsulphoxide

I've also used a neti pot to clean the airways with saline solution and it's helpful but I find that a bit more uncomfortable and messy than the nebulization.

After a while, I realized that these symptoms usually have to do with allergic reactions. For example, dairy is particularly quick in bringing sinus symptoms, so eliminating even butter helped immensely. I say this because perhaps there's something triggering the inflammation and finding what that is may help reduce the symptoms.

Yes, it's sort of "high maintenance", so I would understand if you rather go through the surgery. As you also know, it is a pretty common surgery and most people seem to do just fine after it.

You appear to have had a different presentation of symptoms to my son. I'm not sure if what you had would qualify, but if you didn't get those as result of infection I would say it's the same thing. My son doesn't have aphtous stomatitis at all, but does have really high fevers. That's the trouble. It's very debilitating and you need to keep giving him antipyretics every few hours to keep his temperature below 40 C. It went up to 41.1 once. It's pretty damn scary and he's a mess, of course.

 

[Revolucionar]

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.

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?

Association of Long-Term Risk of Respiratory, Allergic, and Infectious Diseases With Removal of Adenoids and Tonsils in Childhood - PubMed

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

Why You Should Never Remove Your Tonsils

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

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.



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.


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.

https://www.reddit.com/r/Autoinflammatory/comments/1b564u0/does_diet_make_much_difference_pfapa_25yr

As you can see, people (with or without tonsils) who have PFAPA are still having other symptoms.

The Gut, Digestion and PFAPA – It's Not Just a Virus

itsnotjustavirus.com

Maybe you can do some blood tests for celiac/food allergies too?

What can we learn about PFAPA?

Periodic fevers associated with celiac disease and marked increase of NK cells - PMC

pmc.ncbi.nlm.nih.gov

https://www.clinexprheumatol.org/article.asp?a=12210

That is - secondary opportunistic infection. Meaning the immune system is struggling.

Which leads too:

The Association Between Vitamin D Level and PFAPA Syndrome: A Systematic Review - PMC

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

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.

Thanks for this. Lots to dig into here. There's actually some stuff in there that suggests getting a tonsillectomy is a pretty good option. I think we might delay any surgery for awhile and see how this goes. He's only had two episodes so far and we don't know what's going to happen next and whether or not we can mitigate the situation with natural approaches. I just don't want him to have to go through more of these episodes. It's pretty bad and it really takes it out of him.

He also started going to preschool last week and he really likes going and would be really sad if he had to miss days all the time.

 

[Kika]

Bok Revolucionar,
Pridružujem se onima koji su preporučili Propolis, uz napomenu da biste trebali pronaći bezalkoholni propolis ( otopina za djecu).
Za mog mlađeg sina, koji je patio od čestih upala grla i afti do otprilike 3 godine, propolis je učinio čuda. Ali moram reći da se nisam pridržavala doziranja po kapi. Doza je bila puna kapaljka od 1 mililitra (oznaka na kapaljci) koju sam nanosila direktno na krajnike, tri puta dnevno. Upala bi se povukla za jedan dan, pa sljedeći dan nije bilo potrebe za nanošenjem. Afte su se potpuno povukle, upale su se sve rjeđe pojavljivale, tako da do polaska u školu više nije bilo problema. Sam bi prijavio potrebu za liječenjem rečenicom " Grebe me u grlu", pa smo djelovali na samom početku i visoke temperature se nisu javljale. Također bih dva puta godišnje kupovala multivitaminski sirup od Dr. Theissa i dijelila ga između oba sina.
Nadam se da bi moglo biti korisno i tvom sinu.

Hi Revolucionar,
I join those who recommended Propolis, with the note that you should find an alcohol-free propolis (solution for children).
For my younger son, who suffered from frequent sore throats and canker sores until he was about 3 years old, propolis worked wonders. But I must say that I did not adhere to the dosage per drop. The dose was a full 1 milliliter dropper (marking on the dropper) that I applied directly to the tonsils, three times a day. The inflammation would subside in one day, so the next day there was no need to apply. The canker sores completely subsided, the inflammations appeared less and less frequently, so that by the time he started school there were no more problems. He would report the need for treatment with the sentence "My throat is scratchy", so we acted at the very beginning and high temperatures did not occur. I would also buy multivitamin syrup from Dr. Theiss twice a year and divide it between both sons.
I hope that it could be useful for your son too.

 

[Gaby]

Is he experiencing sleeping issues and/or only cortisone controls the symptoms? Sleeping issues are suspected with chronic mouth breathing, hyperactivity during the day, or snoring during the night. That could definitely weight in the decision for surgery, as it really favors neurodevelopmental problems to have sleep apnea secondary to the inflammation.

 

[Revolucionar]

Is he experiencing sleeping issues and/or only cortisone controls the symptoms? Sleeping issues are suspected with chronic mouth breathing, hyperactivity during the day, or snoring during the night. That could definitely weight in the decision for surgery, as it really favors neurodevelopmental problems to have sleep apnea secondary to the inflammation.

They gave him methylprednisolone and that's the only thing that affects the symptoms. I guess that's pretty much the same as cortisone. Antipyretics reduce the temperature slightly but very short lived.

He generally sleeps through the night. O haven't noticed anything that would point towards apnea but he does tend to snore when he has cold like symptoms. He doesn't mouth breathe ever and even wakes up if his nose is too stuffy. He is a kid who you could describe as hyperactive but I just tend to see that as a normal, lively, boisterous child of the male persuasion.

You think we should look into his sleep more deeply?

 

[Revolucionar]

Bok Revolucionar,
Pridružujem se onima koji su preporučili Propolis, uz napomenu da biste trebali pronaći bezalkoholni propolis ( otopina za djecu).
Za mog mlađeg sina, koji je patio od čestih upala grla i afti do otprilike 3 godine, propolis je učinio čuda. Ali moram reći da se nisam pridržavala doziranja po kapi. Doza je bila puna kapaljka od 1 mililitra (oznaka na kapaljci) koju sam nanosila direktno na krajnike, tri puta dnevno. Upala bi se povukla za jedan dan, pa sljedeći dan nije bilo potrebe za nanošenjem. Afte su se potpuno povukle, upale su se sve rjeđe pojavljivale, tako da do polaska u školu više nije bilo problema. Sam bi prijavio potrebu za liječenjem rečenicom " Grebe me u grlu", pa smo djelovali na samom početku i visoke temperature se nisu javljale. Također bih dva puta godišnje kupovala multivitaminski sirup od Dr. Theissa i dijelila ga između oba sina.
Nadam se da bi moglo biti korisno i tvom sinu.

Hi Revolucionar,
I join those who recommended Propolis, with the note that you should find an alcohol-free propolis (solution for children).
For my younger son, who suffered from frequent sore throats and canker sores until he was about 3 years old, propolis worked wonders. But I must say that I did not adhere to the dosage per drop. The dose was a full 1 milliliter dropper (marking on the dropper) that I applied directly to the tonsils, three times a day. The inflammation would subside in one day, so the next day there was no need to apply. The canker sores completely subsided, the inflammations appeared less and less frequently, so that by the time he started school there were no more problems. He would report the need for treatment with the sentence "My throat is scratchy", so we acted at the very beginning and high temperatures did not occur. I would also buy multivitamin syrup from Dr. Theiss twice a year and divide it between both sons.
I hope that it could be useful for your son too.

I've used propolis my entire life and I do give it to him especially when he has any upper respiratory symptoms but unfortunately it doesn't seem to help with this. Btw, those unalcoholic tinctures tend to have other weird ingredients so I just go with alcohol. It's too little to have a negative effect in my view.

 

[Gaby]

He generally sleeps through the night. O haven't noticed anything that would point towards apnea but he does tend to snore when he has cold like symptoms. He doesn't mouth breathe ever and even wakes up if his nose is too stuffy. He is a kid who you could describe as hyperactive but I just tend to see that as a normal, lively, boisterous child of the male persuasion.

You think we should look into his sleep more deeply?

A child should never snore. If symptoms can get controlled, ideally without repetitive cortisone, so that the snoring is very short-lived, it could be okay. Sleep apnea tests for children exist, but not all specialists do them. It would have to be a pediatric otorhinolaryngologist specializing in sleep disorders secondary to big tonsils, children with chronic rhinitis (mouth breathers), etc.

 

[Revolucionar]

A child should never snore. If symptoms can get controlled, ideally without repetitive cortisone, so that the snoring is very short-lived, it could be okay. Sleep apnea tests for children exist, but not all specialists do them. It would have to be a pediatric otorhinolaryngologist specializing in sleep disorders secondary to big tonsils, children with chronic rhinitis (mouth breathers), etc.

I'm not really sure if it's snoring technically. When he has a stuffy nose, he kind of breathes through it so it makes some snoring sounds but I wouldn't say it's your regular snoring. When his nose is clear, he never makes those sounds. Hope that makes sense.

We will be seeing and ORL doctor soon so I'll make sure to raise that.

What do you think about all of this regardless of the matter of breathing?

 

[Gaby]

What do you think about all of this regardless of the matter of breathing?

One of them modern diseases that children in the 20th century didn't have to deal with, for the most part. If your partner is on the same page, I would remove dairy and gluten, GMOs, processed foods, keep the vaccination schedule to the bare minimum (if it's not too late already), try vitamin C, homeopathic remedies and even colchicine, an old school anti-inflammatory used for this syndrome. The later could substitute cortisone, and it has an excellent profile.

If there are sleeping issues, surgery weights in more. In children, it manifests as hyperactivity and lack of concentration.