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Off Topic :
Medical Peeps- What about P F A P A

Topic is Sleeping.
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 WhatsRight (original poster member #35417) posted at 5:02 PM on Thursday, December 1st, 2022

My granddaughter has been "diagnosed" with PFAPA. And she has episodes every 4 weeks…almost to the day.

Last week when it flared up again, her mama gave her some prescribed prednisone… One dose, five units.

Her fever almost immediately disappeared and she felt great for several days. Then last night came down with another fever.

Another treatment sometimes used is a tonsillectomy. I have been reading some about it, and I was wondering if any of you all had any special insight about the situation.

Sometimes the tonsillectomy, they say, can take away the flareups and then the condition goes away at about age 10.

But, I’m also reading that removing the tonsils can increase the chances and severity of respiratory illnesses later in life. Also, the prednisone scares me.

I think her mama is leaning toward having the tonsillectomy in hopes that it will just alleviate the situation. She hates to have her miss a lot of school, be sick every 4 to 6 weeks, etc. I am concerned about the effects of the treatments, i.e. prednisone/tonsillectomy. My thought is if the episodes don’t too strongly impact her, that she should just let it run its course.

Does anybody have any insight into this condition?

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8193   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
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Jeaniegirl ( member #6370) posted at 6:43 AM on Friday, December 2nd, 2022

Whatsright, what is PFAPA?

As a kid I had constant tonsilitis. Our family doctor - someone my Mom placed sitting next to god - refused to remove tonsils as he said they were 'put there for a purpose.' I would miss school two weeks at a time, I'd be so sick. I wouldn't even be able to talk. Finally when I was around 12, my left tonsil actually ruptured. I will never forget it. Mom had taken me to dr. god and he had actually painted my tonsils with a swab with iodine! I even had scars on my throat after the rupture. But the tonsilitis stopped. BUT then at age 28 I got tonsilitis again and thought ...'oh hell no!" and went to a throat surgeon and had them removed.

Does PFAPA cause the tonsils to swell? Does she have high fevers?

Poor kid. Hope she's fixed soon.

"Because I deserve better"

posts: 3726   ·   registered: Feb. 1st, 2005
id 8767641
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 WhatsRight (original poster member #35417) posted at 3:11 PM on Friday, December 2nd, 2022

The letters stand for "Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adentitis".

Basically means repeated episodes (about every 4-6 weeks) of fever, mouth sores, sore throat, and swollen lymph nodes.

From what I understand, it means that she has an extra sensitive immune system, and her body thinks there is an illness and goes into fight mode. It is not contagious, because there is not actually an illness, and at about 10 years old just goes away. In the meantime, however, kids have to deal with being sick for sometimes one week out of four, and have to miss a lot of school.

The steroids and/or tonsillectomy sometimes stop it in its track. I’m just wondering, with the tonsillectomy, if the cure is as bad as the condition… If it causes more respiratory issues in adulthood.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8193   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8767779
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Ariopolis ( member #75786) posted at 6:56 PM on Friday, December 2nd, 2022

I too had chronic tonsillitis. It was a curse that lasted through my twenties.

It happened so often that I simply had to learn to work through the pain. That was my life. It was like a curse. I learned all the syrups, all the drops, even codeine that I signed for at the drugstore.

I was thirty when I was toughing another episode out. Eventually I started getting weak and dizzy from the soreness and sharp pain of the tonsils and went to First Care or something like that.

They told me I had an hour to go home, grab an overnight night bag and return to the hospital where they scheduled surgery for the next morning.

I had a double tonsillectomy the next morning and spent three days in the hospital because getting your tonsils out as an adult is not easy. I don't know if tonsils have roots or something but mine were not snipped out, they were carved or scooped out and cauterized. It was awful. It looked awful, all black and burned back there.

But I was so happy. I was never going to suffer from that again in my life. I had thick white cotton socks on and I'd take my IV on its rolling stand and skate down the halls in my socks, I was so happy. (It was a holiday weekend and pretty empty.) I heard the nurses ask a relative, she must be a pretty active person, isn't she?

I was just so happy.

Because the tonsils get infected, and that infection is so near your brain stem in back, it had become a life threatening situation.

You think of the mouth and throat and maybe chest when the tonsils get infected but we never consider the entire neck and the brain stem which is also involved.

My parents had been told about and bought the stories of the wonderful benefits of keeping the tonsils but the cold hard truth is I'm a much healthier person without them than with them.

I do not have respiratory problems and get no more nor worse colds than anyone else.

If only I had the tonsils out when I was a kid. I would have suffered so much less.

posts: 264   ·   registered: Nov. 2nd, 2020
id 8767857
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 WhatsRight (original poster member #35417) posted at 8:08 PM on Friday, December 2nd, 2022

Thanks for that. It’s reassuring.

I think it is not actually considered to be inherited or passed on, but her mother has recently told me that it has just occurred to her that as a child, she had strep throat it seems like every month or so, and had to skip a lot of school. And when she got older, it went away. So she is thinking now that she may have had it and they just didn’t know exactly what it was at that time.

I am very homeopathic by nature, and my husband and I have always valued homeopathic care over modern medicine quite frankly. Nowadays, I am more blended. I believe in all different facets of medicine working together. So I’m not sure about the sources of what I’m reading, about more respiratory illness as an adult if your tonsils are taken out as a child. I never know which one to believe.

Anyway, it’s not my call. Her mom will make the decision, I guess along with my son… But he usually just goes by what she thinks is best. She’s a very good mother and cares a great deal for her child. She will make the right decision.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8193   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8767867
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tushnurse ( member #21101) posted at 8:53 PM on Friday, December 2nd, 2022

If it were my kidney get them yanked immediately.
This can also cause sleep apnea when they are big and sore and it is unpleasant for the kid going through it and yes steroids help but its not a fix.

My youngest had terrible ears we did tunes at 8 mos and a second set at 20 mos. I begged them to pull adenoids and tonsils they refused the tonsils but the adenoids being gone helped significantly but even now at 23 her tonsils are huge. Like drs will say wow those are big and thats when she is healthy when she gets sick they touch each other. Very unpleasant for her.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20137   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8767874
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 WhatsRight (original poster member #35417) posted at 12:15 AM on Monday, December 5th, 2022

Well, turns out she has the flu…onset of symptoms about 2 hours after she left our house. Ugh!

My sister, who was also here, is already sick as a dog.

My H and I are w a I t I n g…

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8193   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8768156
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 WhatsRight (original poster member #35417) posted at 11:53 PM on Wednesday, December 7th, 2022

Just sayin’…H and I dodged the bullet with the flu thing. Thank God!

It’s really bad here.

"Noone can make you feel inferior without your concent." Eleanor Roosevelt

I will not be vanquished. Rose Kennedy

posts: 8193   ·   registered: Apr. 23rd, 2012   ·   location: Southeast USA
id 8768574
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Jeaniegirl ( member #6370) posted at 11:57 PM on Wednesday, December 7th, 2022

Flu is bad where I am too. Some schools closing or going to virtual learning because of students and staff being out sick.

One thing after another .....

"Because I deserve better"

posts: 3726   ·   registered: Feb. 1st, 2005
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Topic is Sleeping.
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