My son has PFAPA syndrome

[Fluffy]

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.

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?

 

[Revolucionar]

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.

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?

 

[Revolucionar]

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?

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.

 

[Kika]

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.

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.

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.

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]

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.

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.

 

[Revolucionar]

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.

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.

 

[Fluffy]

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.

Sorry I misunderstood. 4 year olds begin preschool in Australia, then kindergarten at 5 years.