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Re: Perodic Fever syndrome PFAPA

Re: Perodic Fever syndrome PFAPA

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Posted by Donna Cameron on November 14, 2000 at 09:29:08:

In Reply to: Re: Perodic Fever syndrome PFAPA posted by Amy Damele on November 13, 2000 at 19:28:23:

This message is for Amy or anyone else who may have information or want to talk about this Pfapa syndrome.
Amy my son who is now 4 1/2 has had this since he was 1 1/2 years old. His fevers would get very high
also. Sometimes to 105. Very scarey. We could count on it every 2-3 weeks. Now 3 1/2 yrs later he stilll
gets them. His fevers don't get as high but he still goes thru the same thing. Almost exactly like you said.
We can always tell a couple days ahead when he will be starting one of his episodes. I would love to hear
from you. We have been to two specialist hospitals plus our own. We have tried the steroid method once.
In my opinion it seemed to stop it in its tracks but than 4 days later it started again. So I don't know if
it just prolonged or what. The dr.s don't seem to have a whole lot of information or reason behind this
sickness. My work email is dcameron@binghamton.edu if you would like to email me.
It is nice to hear from someone who is going thru this.
take care.


: : I have a lot of information; I would be happy to forward it to you. I can give you some very good links to data. My son had it but he is no longer having the episodes. My heart goes out to you and your daughter.

:
: I WOULD ALSO LIKE ANY INFO ANYONE HAS ON PFAPA!
: My daughter is 17 months and has what doctor's think is PFAFA. She has been sick every 15 to 20 days with a high fever (101-104.5) with the exception of going 5 months in a row one time without getting sick. But then started all over again! She has had every blood test imaginable, CT scan, neck x-ray, spinal tap, bone scan, allergy test, strep tests.... which all came up negative (which we are thankful for). Her SED rate is always elevated when she is sick, but that's it. I have kept a diary on her illness and have found that she has a pattern each time. For example, a couple of days before she gets sick, she begins to sneeze, she drinks A LOT of water (acts like she can't get enough water), her eyes are puffy with dark circles under them, and she is very cranky, mean (pulls hair, pinches, very restless - just not the same kid). These are all signs that she is going to get sick and within a couple of days, she breaks out with a fever. Usually day two and sometimes day three of the episode are the worst. Her fever peaks around 104, she is very sick, won't eat, and usually vomits once or twice. I have to alternate Motrin and Tylonol to keep her fever down. She also has a sore throat (we think-she is old enough now to point to her mouth and say "ow")and has swollen lymph nodes in the sides of her neck. So swollen that her neck is usually stiff. By the 3rd or 4th day, her fever breaks and she is completely better, as if nothing was ever wrong!! The episodes do not set her back any. She walks, runs, talks,.....completely normal. The doctors have put her on Cimetidine to see if it will stop the episodes. She has been taking it for almost 2 months and no luck! Their next suggestion is to try a very small dose of Steroids on the FIRST day of her fever to see if that prevents her from being sick on days 2, 3, and 4. Any/all info would be much appreciated. If anyone has had a child with this, at what age did they outgrow it? Did it occur as often as my daughter's? Did you find anything that eased their episode? Do you have names of doctor's that you would suggest we see or is there really nothing more that they would tell us. You can see that I am worried, frustrated....My biggest concern is that the doctor's have diagnosed it correctly. They said her fevers cycle a little more often than most with this syndrome. I don't want them to miss something!! I would be happy to share any info that I have also or just be a support to anyone who needs it. Thank you for your time.




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