There’s boisterous then there’s hyper-active, a child should be able to relax and focus, play quietly and calmly, self soothe, follow directions etc, increasing in capacity to do so with age. Does he chill out as well as being a busy 4 year old boy?
My son has PFAPA syndrome
- Thread starter Revolucionar
- Start date
He's never eaten any processed foods, no sugary stuff other than fruit. We eat almost only organic meat and vegetables. He doesn't do dairy other than some aged cheese sometimes. Gluten we could work on. He doesn't reallybeat bread but we do eat pasta sometimes and pizza on occasion.
With vaccinations we stopped when he was about two. My wife wouldn't budge on that and I hadnto back down. She got around to it during covid though so he didn't get any of the booster shots. He did have some kind of issue that I think may have been vaccine related when he was 6 months old. He had like green poop. The doctors found nothing. Later he got this weird rash on his inner thigh twice right after vaccinations. He didn't get any more shots after that.
I will definitely look into his sleep. There might be something to it. In that case, you're saying surgery might make sense?
What sorts of homeopathic remedies do you recommend?
He's 6 actually. I think he can strike a pretty good balance. But he could be a bit more focused sometimes. Depends on what he's doing at the time. He can really get into drawing for example.
I recommended alcohol-free because of the irritation of the alcohol itself on the sore spot. My son was very young and I don't think I would have gotten his cooperation, if the pain had been even greater with each application.
But I completely overlooked your post (I probably wrote mine).
There is a "rule" when children first attend kindergarten that for the first two to three months, about 1/3 of the children are constantly missing from the group. Viruses, colds, fever. "Aunts" and nurses in kindergarten explain this phenomenon by saying that each child brings with them a kind of family microbiome, to which they are immune, but not to the microbiome of other children. So during those months, there is an exchange/infection between children and immunization of the group. Those who do not attend kindergarten experience this at the beginning of school (first grade of elementary school).
If your son's problem coincides with starting kindergarten (I know that you need to do a medical examination first, which requires staying in the clinic with already sick children), then I would wait and endure for another two to three months and monitor the development of the situation.
If it's not related to that, I would opt for the lesser evil, removing the tonsils, because long-term use of corticosteroids (according to your prediction, several years) has far greater consequences/side effects, especially on the child's development. This is my opinion, but I certainly wouldn't rush into the decision.
SasaM
Jedi Council Member
To understand you right:
He did get the usual vaccines according to established schedule, like smallpox, mumps, scarlet fever and all other stuff they give to babies and kids today, and on top of that he also got a covid vaccine? If so, which one, i.e. which brand?
If he got the regular ones, somewhere around age 6 and certainly before going to school as it is a prerequisite, or at least it was 10 years ago, there is going be an additional, IRC, the TBC one. The son of my ex-ex had rather a reaction to it soon after he got it, with fever and affecting his immune system.
In that regard, if you aren't going to manage to avoid that 'obligation', maybe @Regulattor might have some useful info or advice to share.
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No you misunderstood. He got all the regular shots up until he was two years old. He didn't get any of the booster shots for mumps and all of those. Covid clotshots? No way. None of us would come near that stuff. I've been running a stalling strategy on the doctors since then and it's been working out so far. Next year he's supposed to start school so I just need to get him to that and we should be good. This summer I managed to get a paper from the doctor so that he could enroll into preschool, which is also mandatory, but we got him into a small private one so we avoided the whole application process for the state run ones.
I started stalling by saying that I wanted to see the insert papers from the exact ampule they wanted to give him. They acted in a way that basically told me that that paper doesn't exist. They told me to go online. Then we just started going to private clinics where they don't check on this stuff outside of asking you if he was vaccinated on schedule. We just lie every time. Lol.
One time we had to go back to his regular doctor and she started saying that I was trying to get into their refrigerator. She was acting like I was doing some crazy stuff there. What a lunatic. Anyway, I told her I just want that insert and she never reported us. Now he's got a new doctor and this one told us to go see an epidemiologist which I'm now delaying since she gave us the paper for preschool anyway.
Cat and mouse game. I think they're not that interested in actually engaging with people like us. They just try to intimidate you and it works on the vast majority of folks. If it doesn't, they don't seem to bother. I didn't even get a fine.
Sorry I misunderstood. 4 year olds begin preschool in Australia, then kindergarten at 5 years.
Surgery will make sense only if his tonsils are so obstructing that he's having sleeping issues from them. Surgery would do very little or nothing to reduce overall inflammation, so that still needs to be worked out.
Unfortunately, the vaccine schedule is so busy that by 2 years old, most of the vaccines are done.
Children respond well to homeopathy, but for that, you'll have to visit a dedicated practitioner.
Colchicine is something that mainstream medicine offers, at least in the U.S., for this pediatric syndrome.
From what I can find in the literature, tonsillectomies work very well for PFAPA.
The role of tonsillectomy in the Periodic Fever, Aphthous stomatitis, Pharyngitis and cervical Adenitis syndrome; a literature review - PMC
Tonsillectomy (TE) or adenotonsillectomy (ATE) may have a beneficial effect on the clinical course in children with the Periodic Fever, Aphthous stomatitis, Pharyngitis and cervical Adenitis (PFAPA) syndrome. However, an immunological reason for ...
pmc.ncbi.nlm.nih.gov
I’m really sorry to hear what’s happening with your child.
When I was young, I had the same problem — constant courses of antibiotics and corticosteroids. My mother was a nurse in a pediatric ward, and she would always take me there whenever I got sick. I still remember it vividly: there was an elderly doctor who, unlike many today, made decisions based more on personal judgment, knowledge, and experience than on strict protocols.
Many other doctors recommended having my tonsils removed, but that older doctor advised against it. He told my mother not to worry, saying that everything would change once I reached puberty.
Sometimes my tonsils would become so inflamed and swollen that I could barely breathe — it felt like I was suffocating. During those episodes, I would receive corticosteroid injections, and they would help me recover.
And indeed, once I reached puberty, everything disappeared. I’ve never had those episodes again, and my tonsils have never been inflamed or swollen since.
On the other hand, over the past 15 years I’ve met many parents whose children had the same issue. Most chose to go ahead with tonsil removal surgery, and all of them said their kids felt much better afterward. The surgery is performed under general anesthesia, and the children are usually discharged the next day. From what I know, none of them experienced any side effects or complications following the procedure.
When my son was little, he had a similar problem — we were constantly dealing with coughs, fevers, and bouts of bronchitis. Every visit to the doctor ended with another course of antibiotics or corticosteroids, but none of them really helped. One day, his condition worsened, and he developed bilateral pneumonia. He spent ten days in the hospital receiving strong medications.
He had never received any vaccines except the ones routinely given to newborns.
To make a long story short, the underlying cause of his recurring illnesses turned out to be a casein allergy. Even after discovering that, we spent several more months trying to help him, but he still suffered from persistent phlegm, coughing, and fevers.
Eventually, I found a skilled homeopathic practitioner who was also a pediatrician. She examined our son carefully and asked my wife and me many questions — she wanted to understand not only his symptoms but also his environment and daily life. She prescribed several homeopathic remedies and explained how and when to use them. It was a slow process, but it helped tremendously.
About a year later, he was noticeably stronger, and his immunity had improved significantly.
So yes — based on my experience, I can genuinely recommend homeopathy as a helpful and holistic approach to dealing with health issues.
When I was young, I had the same problem — constant courses of antibiotics and corticosteroids. My mother was a nurse in a pediatric ward, and she would always take me there whenever I got sick. I still remember it vividly: there was an elderly doctor who, unlike many today, made decisions based more on personal judgment, knowledge, and experience than on strict protocols.
Many other doctors recommended having my tonsils removed, but that older doctor advised against it. He told my mother not to worry, saying that everything would change once I reached puberty.
Sometimes my tonsils would become so inflamed and swollen that I could barely breathe — it felt like I was suffocating. During those episodes, I would receive corticosteroid injections, and they would help me recover.
And indeed, once I reached puberty, everything disappeared. I’ve never had those episodes again, and my tonsils have never been inflamed or swollen since.
On the other hand, over the past 15 years I’ve met many parents whose children had the same issue. Most chose to go ahead with tonsil removal surgery, and all of them said their kids felt much better afterward. The surgery is performed under general anesthesia, and the children are usually discharged the next day. From what I know, none of them experienced any side effects or complications following the procedure.
When my son was little, he had a similar problem — we were constantly dealing with coughs, fevers, and bouts of bronchitis. Every visit to the doctor ended with another course of antibiotics or corticosteroids, but none of them really helped. One day, his condition worsened, and he developed bilateral pneumonia. He spent ten days in the hospital receiving strong medications.
He had never received any vaccines except the ones routinely given to newborns.
To make a long story short, the underlying cause of his recurring illnesses turned out to be a casein allergy. Even after discovering that, we spent several more months trying to help him, but he still suffered from persistent phlegm, coughing, and fevers.
Eventually, I found a skilled homeopathic practitioner who was also a pediatrician. She examined our son carefully and asked my wife and me many questions — she wanted to understand not only his symptoms but also his environment and daily life. She prescribed several homeopathic remedies and explained how and when to use them. It was a slow process, but it helped tremendously.
About a year later, he was noticeably stronger, and his immunity had improved significantly.
So yes — based on my experience, I can genuinely recommend homeopathy as a helpful and holistic approach to dealing with health issues.
There's a saying in Spanish, "The devil knows more because he is old than because he is the devil." And as a former heart surgeon with decades of first line experience in the medical field, my blink of an eye found this part of the study in less than 3 seconds and that I'm highlighting for you because it's almost always the case (i.e. I'm yet to find the exception):
As a general practitioner, who knows several that got better after having their tonsils removed: the inflammation either remains or morphs. His immune system is just not normal, i.e. it is not normal to develop this syndrome. He'll move on to develop allergies, bronchitis or related.
You're looking into a vulnerable immune system, compounded by environmental factors, probably related to the childhood vaccination. This child can have its tonsils removed, but he definitely needs help, i.e. homeopathy, supplements.
You can also check the Mallampati score of your child, that could definitely be a factor favoring sleep apnea (grades III and IV favoring it):
Mallampati score - Wikipedia
His soft palate is Class 1.There's a saying in Spanish, "The devil knows more because he is old than because he is the devil." And as a former heart surgeon with decades of first line experience in the medical field, my blink of an eye found this part of the study in less than 3 seconds and that I'm highlighting for you because it's almost always the case (i.e. I'm yet to find the exception):
As a general practitioner, who knows several that got better after having their tonsils removed: the inflammation either remains or morphs. His immune system is just not normal, i.e. it is not normal to develop this syndrome. He'll move on to develop allergies, bronchitis or related.
You're looking into a vulnerable immune system, compounded by environmental factors, probably related to the childhood vaccination. This child can have its tonsils removed, but he definitely needs help, i.e. homeopathy, supplements.
You can also check the Mallampati score of your child, that could definitely be a factor favoring sleep apnea (grades III and IV favoring it):
Mallampati score - Wikipedia
en.wikipedia.org
The full paragraph that you quoted reads:
So it's saying that there were three high quality studies that point to TE being curative in 92% of patients. The caveat you pointed out refers to case series. Apparently there was only one high quality RCT that shows significant improvement.
Alltogether it seems pretty promising. Our infectologist told us that she only had one case where a tonsillectomy didn't help. Parents who opt out of the surgery end up giving steroids for every episode.
This PFAPA syndrome doesn't seem to be an autoimmune issue.
Review of autoinflammatory diseases, with a special focus on periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis syndrome - PMC
There have been remarkable developments in the field of autoinflammatory diseases over the last 20 years. Research has led to definitions of new conditions, increased understanding of disease mechanisms and specific treatment. The polygenic ...
pmc.ncbi.nlm.nih.gov
I don't think outcomes of kids who get tonsillectomies for other reasons necessarily apply to PFAPA.
This is what I would really like to avoid.
This is what I hear anecdotally, as well. Obviously, I can't know how true that is exactly. They may be more susceptible to infections than they would have been otherwise, but that might be a good tradeoff. I don't know.
The point is that they can sell these surgeries very well on studies. It all sounds pretty on paper, but behind the scenes is all pretty biased. You can see good results even in people who thought they had a surgery, while they actually just had a placebo surgery with only a scar. Still, it's not black and white. Dr. Mary Talley Bowden, working in this field and famous for her stand during COVID, was interviewed by Joe Rogan and Tucker Carlson. She didn't agree with Bobbie Kennedy on the subject of "against tonsillectomies". The procedure often improved quality of life in children, particularly if there are sleep/respiratory disorders.
See how your wife feels about the procedure. If both parents are reassured, the child would do much better.
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