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PFAPA

A community dedicated to sharing information about Periodic fever, aphthous ... more

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Reply: Do you know anyone that suffers from PFAPA syndrom...

My 7 year old gets very high fevers (103-105). tHis has happened since infancy. She has eye pain with the...

Posted by kmarieemerson

9 Replies | Reply | Watch This Discussion Report This | Share this:Do you know anyone that suffers from PFAPA syndrome? My 7 year old gets very high fevers (103-105). tHis has happened since infancy. She has eye pain with the...

PFAPA and Eosinophilic GI disorders

My 8 year old was diagnosed with PFAPA 3 years ago when she was 5. She has been having severe stomach aches...

Posted by mjrivera

0 Replies | Reply | Watch This Discussion Report This | Share this:PFAPA and Eosinophilic GI disorders My 8 year old was diagnosed with PFAPA 3 years ago when she was 5. She has been having severe stomach aches...

PFAPA and Eosinophilic GI disorders

My 8 year old was diagnosed with PFAPA 3 years ago when she was 5. She has been having severe stomach aches...

Posted by mjrivera

pfapa

My 15 yr old grand-daughter was diagnosed with pfapa as an infant after too many tests on her tiny body. Her...

Posted by grammaof9

0 Replies | Reply | Watch This Discussion Report This | Share this:pfapa My 15 yr old grand-daughter was diagnosed with pfapa as an infant after too many tests on her tiny body. Her...

Reply: 22 years of PFAPA

Hi there, I hope you still check and read this post. I just want to share a little of my stories with you both...

Posted by Fver14

Hi there,

I hope you still check and read this post. I just want to share a little of my stories with you both in hope that it could offer some help maybe. I am from Australia, I have PFAPA when was about 18 years old, I was not properly diagnosed until 25/26 years old, most doctors old me I have chronic fatigue syndrome. I have this nearly 12 years now. How I found out for sure was my doctor did full blood test on me every time I have a fever, after three tests I was referred to an immunologist/ rheumatologist. I have high white T cell count, lymphocyte, every time I have fever and c reactive protein.

I did not vomit however I came close to it many times, I often have this silver test in my mouth, upset stomach, lost of appetite, nausea, high fever sometimes up o 41 degree Celsius, swollen glands around the throat area, ulcer, sometimes headache of the fever is very high, my skin feel sensitive,, feel ache like as if it is coming deep down from my bone, my skin feels tingly at times sometimes like small little lightning strike running through parts of my body. I do not have big swollen glands in the groins area, but they sometimes feel sensitive and tender and once in a while I have could feel little lumps. I used o have the fever every two weeks, and it was so severe, until I started on Prednisolone 25 mg, nearly two years ago. I have now decided to stop taking the steroid as my my fever are not as strong and lengthy as they use to be anymore, I now just take paracetamol when I have the fevers. I wrote this to you because I do not think tonsillectomy will help our daughter. Because I do not have a tonsil and I still have the fevers. Tonsils are quite important in protecting you from other viruses and disease. I recommend you see an immunologist or rheumatologist if there is one near you.

If you have any questions about my Prednisolone dosage, what I do to cope or anything questions at all concerning PFAPA please free to contact me on this site or thread.

Kind regards SashaView Thread

Posted by Fver14

7 Replies | Reply | Watch This Discussion Report This | Share this:22 years of PFAPA Hi there, I hope you still check and read this post. I just want to share a little of my stories with you both...

Reply: Fevers undiagnoised

One more thing. He gets cronic sinus infections, like every few weeks completely unrelated to the fevers....

Posted by mommaculley

1 Reply | Reply | Watch This Discussion Report This | Share this:Fevers undiagnoised One more thing. He gets cronic sinus infections, like every few weeks completely unrelated to the fevers....

Reply: new diagnosis

My son was 4 when he started with fevers and got them regularly about every 21 days for a year until he was...

Posted by D1001

3 Replies | Reply | Watch This Discussion Report This | Share this:new diagnosis My son was 4 when he started with fevers and got them regularly about every 21 days for a year until he was...

A very desperate mom...

My 5 year-old-son has been very sick for four years now. He is blood transfusion dependent, suffering...

Posted by Bravelittlegabe

0 Replies | Reply | Watch This Discussion Report This | Share this:A very desperate mom... My 5 year-old-son has been very sick for four years now. He is blood transfusion dependent, suffering...

We have had success with a chiropractor

My daughter just turned 5 in August and we have been battling reoccuring fevers for over a year. Like many...

Posted by caseyjdoyle

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0 Replies | ReplyReport This| Share this:We have had success with a chiropractor My daughter just turned 5 in August and we have been battling reoccuring fevers for over a year. Like many...

Reply: exhausted

Hi Bcoby, I can relate to everything you have written. My son just turned 20 months old and we have been...

Posted by MommyHoover

2 Replies | Reply | Watch This Discussion Report This | Share this:exhausted Hi Bcoby, I can relate to everything you have written. My son just turned 20 months old and we have been...

Reply: Remission??

Dear Disney I am wondering what has happened with your son's voice in the last 2 weeks. This is...

Posted by Concernedmom1234

1 Reply | Reply | Watch This Discussion Report This | Share this:Remission?? Dear Disney I am wondering what has happened with your son's voice in the last 2 weeks. This is...

A group run by a RN Mom of a Child with PFAPA

http://groups.yahoo.com/group/PFAPA

A Yahoo group, with about 1500 members, dedicated to PFAPA.

Posted by An_220603

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0 Replies | ReplyReport This| Share this:A group run by a RN Mom of a Child with PFAPA A Yahoo group, with about 1500 members, dedicated to PFAPA.

Ask your physician if your child could have PFAPA

If your child suffers from periodic high fever at intervals of about 3—5 weeks, accompanied by a sore...

Posted by An_220596

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0 Replies | ReplyReport This| Share this:Ask your physician if your child could have PFAPA If your child suffers from periodic high fever at intervals of about 3—5 weeks, accompanied by a sore...

PFAPA Syndrome (periodic fevers with aphthous stom...

http://my.clevelandclinic.org/disorders/periodic_fever_sy...

Article from merckmanuals.com about PFAPA syndrome...

Posted by An_220602

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0 Replies | ReplyReport This| Share this:PFAPA Syndrome (periodic fevers with aphthous stomatitis, pharyngitis, and adenitis) Article from merckmanuals.com about PFAPA syndrome...

Periodic Fever Syndrome

http://my.clevelandclinic.org/disorders/periodic_fever_sy...

Article from my.clevelandclinic.org regarding several periodic fever syndromes, including PFAPA...

Posted by An_220601

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0 Replies | ReplyReport This| Share this:Periodic Fever Syndrome Article from my.clevelandclinic.org regarding several periodic fever syndromes, including PFAPA...

Marshall's syndrome (aka PFAPA)

http://www.orpha.net/data/patho/GB/uk-PFAPA.pdf

Article from the Orpha.net site about Marshall's syndrome, also known as PFAPA...

Posted by An_220600

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0 Replies | ReplyReport This| Share this:Marshall's syndrome (aka PFAPA) Article from the Orpha.net site about Marshall's syndrome, also known as PFAPA...

Wikipedia article on PFAPA

http://en.wikipedia.org/wiki/Periodic_fever,_aphthous_sto...

This is an excellent article about PFAPA, even if it is not a professional journal.

Posted by An_220599

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0 Replies | ReplyReport This| Share this:Wikipedia article on PFAPA This is an excellent article about PFAPA, even if it is not a professional journal.

I would like to see an article on WebMD about PFAP...

I would like to see an article published on WebMD about this condition in order to increase awareness about...

Posted by An_220605

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Would you like to request that WebMD write an article on PFAPA?

0 Replies | Reply | Watch This Discussion Report This | Share this:I would like to see an article on WebMD about PFAPA. I would like to see an article published on WebMD about this condition in order to increase awareness about...

Article from Pediatrics Journal: Differentiating P...

http://pediatrics.aappublications.org/content/124/4/e721....

Citation from the article: "The periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis...

Posted by An_220598

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0 Replies | ReplyReport This| Share this:Article from Pediatrics Journal: Differentiating PFAPA Syndrome From Monogenic Periodic Fevers Citation from the article: "The periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis...

PNAS article abstract: Periodic fever, aphthous st...

http://www.pnas.org/content/108/17/7148.abstract

Introduction from the abstract: "The syndrome of periodic fever, aphthous stomatitis, pharyngitis, and...

Posted by An_220597

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0 Replies | ReplyReport This| Share this:PNAS article abstract: Periodic fever, aphthous stomatitis, pharyngitis, and adenitis (PFAPA) is a disorder of innate immunity and Th1 activation responsive to IL-1 blockade Introduction from the abstract: "The syndrome of periodic fever, aphthous stomatitis, pharyngitis, and...

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Wikipedia article on PFAPA

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Article from Pediatrics Journa...

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