My son has PFAPA syndrome

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So my son, 6, was just diagnosed with PFAPA syndrome. Periodic fever, aphthous stomatitis, pharyngitis and adenitis - Wikipedia

The recommendation is to get a tonsillectomy. This reduces the number of episodes significantly or even stops them altogether in most cases.

On the other hand, each episode can be stopped by giving a shot of corticosteroid.

The syndrome goes away on its own after 5-7 years.

I'm not sure what to do. Are there any alternative approaches to this?

If you asked me yesterday, I would say just get a tonsillectomy, but then I found that between 1 in 2500 and 1 in 55000 kids actually die from the surgery. Many more have serious complications.

Steroids every few weeks for the next 5 years doesn't sound like something I would want to do to my son either.

Any advice is welcome. Thanks.
 
Before you decide on tonsillectomy, have you tried to improve your kids immunity; i.e. daily dose of vitamins, homeopathy, etc?

The condition will go away in a few years, so in the meantime perhaps try to minimize the frequency of episodes by improving the body resistance?

In a quick search online I read that kids otherwise develop normally so from the description of the symptoms, I assume it’s an immunity problem.
How exactly does this condition manifest in your child?
 
Before you decide on tonsillectomy, have you tried to improve your kids immunity; i.e. daily dose of vitamins, homeopathy, etc?

The condition will go away in a few years, so in the meantime perhaps try to minimize the frequency of episodes by improving the body resistance?

In a quick search online I read that kids otherwise develop normally so from the description of the symptoms, I assume it’s an immunity problem.
How exactly does this condition manifest in your child?
It's not an infection actually, it's the immune system overreacting. It's not well researched and it's not clear what the cause is. His immunity is quite good otherwise. He doesn't get sick very often and when he does, he handles it pretty quickly.

This just started last month. These episodes present like a strep infection with high fever, swollen glands and sore throat, but there's no actual infection. Antibiotics do nothing.

Foregoing tonsillectomy, this would most like entail another 5-7 years of episode every few weeks.
 
I found the following in the sessions, and I think I remember reading something from Laura somewhere about the amygdala and why the medical system removes it from children.

YI hope it helps you and serves you:
Session 10 February 2018

Q: (L) The Developmental Trauma book talks about how you have to have knowledge of what's going on. That's the top-down thing. You have to know your survival style and your thinking errors so you can watch for those. At the same time, people who have been going along with these thinking errors for a long time, or those who developed thinking errors in response to a specific situation as they were growing up, also have an elephant that's kind of spring-loaded to be fractious and unresponsive to guidance and direction. That's where the bottom-up treatment comes from. It seemed to me that the neurofeedback was probably the most efficacious way because it helps to calm the brain down so that the rider of the elephant has a chance to grow and develop.

(Pierre) Yeah, and if I understand correctly, neurofeedback prevents this shift into sympathetic mode where the elephant gets all the power; once you've shifted into sympathetic mode, it's uncontrollable.

(L) Yeah, it's the amygdala hijack.

A: Good analogy.

Q: (L) You mean the rider and the elephant?

A: Yes
 
This just started last month.
So, this has been going on for a month, the doctors diagnose it as a general condition in kids and the solution is to chop off the tonsils?
Sounds like Croatian medical system at it´s finest. :lol:

All of the descriptions for PFAPA I found online, i.e.
  • Aphthous stomatitis: Painful mouth sores or canker sores.
  • Pharyngitis: Sore throat, sometimes with redness or white patches on the tonsils.
  • Adenitis: Swollen lymph nodes in the neck.
  • Other possible symptoms: Headache, joint pain, abdominal pain, or rash.
point to some viral condition.

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).
 
I would need to ask my mother about it but it could be that I had something similar as a child. I know that a tonsillectomy was done on me and that I had rather extreme and painful aphthous-like ulcers in my mouth (for a number of years) as well as pretty high fever at some point.

I would recommend trying alternatives first too but wouldn’t discount the tonsillectomy as a possible needed solution either.
 
Added: I‘m pretty sure that the operation was done with general anesthetics on me and I distinctly remember that it wasn’t that easy and pleasant to wake up from the operation and narcotic afterwards. I think one of the things that freaked me out the most was that I was so taken out and couldn’t move for a while while waking up from the narcotic and becoming conscious. It was quite a bit of a traumatic experience I think.

I would highly recommend that if you decide to do the operation, that you make sure to be right next to him after the operation until the point when he wakes up and afterwards and calm him down and say things like: that the narcotic is why he can’t move and that it will get better very soon and such. And possibly say he should sleep and that you are right here and holding his hand and such.
 
I found the following in the sessions, and I think I remember reading something from Laura somewhere about the amygdala and why the medical system removes it from children.

YI hope it helps you and serves you:
Session 10 February 2018

Q: (L) The Developmental Trauma book talks about how you have to have knowledge of what's going on. That's the top-down thing. You have to know your survival style and your thinking errors so you can watch for those. At the same time, people who have been going along with these thinking errors for a long time, or those who developed thinking errors in response to a specific situation as they were growing up, also have an elephant that's kind of spring-loaded to be fractious and unresponsive to guidance and direction. That's where the bottom-up treatment comes from. It seemed to me that the neurofeedback was probably the most efficacious way because it helps to calm the brain down so that the rider of the elephant has a chance to grow and develop.

(Pierre) Yeah, and if I understand correctly, neurofeedback prevents this shift into sympathetic mode where the elephant gets all the power; once you've shifted into sympathetic mode, it's uncontrollable.

(L) Yeah, it's the amygdala hijack.

A: Good analogy.

Q: (L) You mean the rider and the elephant?

A: Yes
Tonsils are not the amygdala
 
So, this has been going on for a month, the doctors diagnose it as a general condition in kids and the solution is to chop off the tonsils?
Sounds like Croatian medical system at it´s finest. :lol:

All of the descriptions for PFAPA I found online, i.e.
  • Aphthous stomatitis: Painful mouth sores or canker sores.
  • Pharyngitis: Sore throat, sometimes with redness or white patches on the tonsils.
  • Adenitis: Swollen lymph nodes in the neck.
  • Other possible symptoms: Headache, joint pain, abdominal pain, or rash.
point to some viral condition.

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).
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.
 
I would need to ask my mother about it but it could be that I had something similar as a child. I know that a tonsillectomy was done on me and that I had rather extreme and painful aphthous-like ulcers in my mouth (for a number of years) as well as pretty high fever at some point.

I would recommend trying alternatives first too but wouldn’t discount the tonsillectomy as a possible needed solution either.
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.
Added: I‘m pretty sure that the operation was done with general anesthetics on me and I distinctly remember that it wasn’t that easy and pleasant to wake up from the operation and narcotic afterwards. I think one of the things that freaked me out the most was that I was so taken out and couldn’t move for a while while waking up from the narcotic and becoming conscious. It was quite a bit of a traumatic experience I think.

I would highly recommend that if you decide to do the operation, that you make sure to be right next to him after the operation until the point when he wakes up and afterwards and calm him down and say things like: that the narcotic is why he can’t move and that it will get better very soon and such. And possibly say he should sleep and that you are right here and holding his hand and such.
Yeah, that's something we've already decided on. If we go through with the surgery, we'll go to a private clinic so we can be with him throughout. That must have been traumatic for you.
 
If it improves with tonsil removal, it's possible that it's largely an immune-related problem associated with them and the mouth in general. I've seen alternative treatment suggestions for this syndrome such as the use of probiotics such as Streptococcus salivarius.

I didn't have this exact condition as a child, but I've mentioned here in the past that they were close to removing my tonsils along with my adenoids. In the end, they were only able to remove the latter because I was in too much pain during the operation. Luckily, for me, quitting dairy years later was enough.
 
I didn´t say that.

You asked at the beginning of the thread:

So I offered an alternative.
Sorry for misunderstanding. It sounded like you were saying that he doesn't have this syndrome but rather some kind of viral infection and that boosting his immune system should help because it's just an infection.
 
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