Follow-Ups to Answer from Expert Dr. Frederick Blount

---

Jeny-Mason wrote at 2006-10-11 20:51:46
My infectious disease Dr. informed us that PFAPA is not caused by a virus, thus, streptococcal tests come back neg.  The child gets strep. symtoms though.  Studies have shown that after children with PFAPA have their tonsils removed, this resolved the syndrom.  Why shouldn't these children get their tonsils taken out instead of taking steroids every month for 8 years or more to treat PFAPA?  

---

PFAPA Parent wrote at 2006-11-21 06:11:16
Dear concerned Mom,

Very few Pediatricians understand PFAPA.  We have gone through all the same experiences you are currently going through.  We finally found a Pediatrician in Columbus OH that really helped.  We learned that the PFAPA is really a hyperactive immune system.  We used pediatric prednisone first in large dosed then worked with the doctor and put him on small doses that really helped.  We only used the prednisone for a short time and only when his fevers were over 104.  He has some what grown out of the main symptoms now.  He is now 9 yrs old and only gets the occasional headaches.  We know and understand all you are going through.  Good luck in finding a Pediatrician that will really listen and help.

---

Val wrote at 2007-07-19 19:37:19
My son went through this for a few years as well.  He was hospitalized the first 3-4 times and when I got fed up with the doctors not giving me answers, I took him to Children's Hospital.  It took a year (it wasn't well-known back then) but they figured it out, his tonsils removed immediately, etc.. and afterwards, he had minor "attacks" and eventually they stopped.  I would not take "no" for an answer if I were you, get the tonsils removed - it helps and there is no need for the child to suffer needlessly.  

Good luck and please feel free to contact me if you have any questions or concerns.

---

Jennifer wrote at 2007-08-05 12:31:38
Hello Erica    I just wanted you to know that there is indeed a fever syndrome named PFAPA. This doctor needs to research PFAPA... a simple google will get you all the answers you need!  My son had PFAPA and it was a horrible experience, and I was amazed at how long it took to get diagnosed and the horrible things my son had to experience before we got a diagnosis and treatment.  He outgrew the PFAPA by the time he was 9 yrs old, but the experience of blood draws, antibiotics every month, countless xrays and hospitalizations traumatized him.  Advocate for yourself and your child!  Don't let people tell you it's "just a virus" and don't be satisfied until  you find the answer you need!   The internet is a great tool, use it to your child's advantage!     Jennifer

---

Hannah wrote at 2007-10-30 18:55:27
PFAPA is a very real syndrome - and the strep test will show negative. My son is 4 1/2 and he's had it for 2 1/2 years. You need to see an infectious disease doctor or a ped. rheumalolgist. We have NOT had the T & A because it scares me - but we are trying Singulair and I am about to see his Ped. Rhuem. in one month - and I will try Tagament with him as well. See someone else - and YES - a T & A MIGHT work (in 30% of cases) . . .

---

PFAPA parent wrote at 2008-06-03 18:37:28
I hope no concerned parent googles for information on PFAPA and finds this answer. PFAPA is a real syndrome, not a virus. There is much good information on diagnosis and treatment on other websites. Children do not need to suffer with these debilitating fevers. Perhaps a knowledgable doctor can update this answer.

---

bob wrote at 2008-07-12 21:11:33
PFAPA is a legitimate syndrome characterized by the findings you described.  Although the cause is unknown, individual episodes seem to respond to one or two doses of steroids.  If the condition is recurrent, it may respond to tonsillectomy.  There is no reason to do multiple laboratory testing as long as the examiner performs a careful exam to rule out other causes of fever.

---

Gina wrote at 2009-03-07 02:43:30
We have the same problem with my 2 year old daughter.She has been hospitalized many times. Our doctor prescribed us a medication. I believe it is a form of cortozone.It is a little white pill and we crush it and put it in her ice cream or yogurt to eat and within 1 hour the fever is gone and doesn't come back until the next episode

anywhere from 3 to 6 weeks. We have gone through this for over 1 year and the doc said taking her tonsils out when she is older is an option.Good Luck!

---