Expert: Dr. Frederick Blount - 7/19/2006

Question
They told me that it stood for Periodic, Fevers, Apthous stomatis, pharyngitis, and cervical adenitis (spelling might be off. Pretty much just the periodic fever syndrome or I've also heard it called Marshall's syndrome. I have read many things about it on health boards, and it seems like people are getting more help than I am. I hear them talk about appointments with their local children's hospital periodically to do tests, but I've had none of that for my son. The only testing that has been done is during his hospital stays. I just get more and more nervous each time it happens, because we go through almost a whole bottle of tylenol and motrin during his fevers. I am scared that there will be long term affects, and not sure what my next steps should be. I hear a lot of people that travel to specialists, but I don't know of any.
Thank you
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Followup To

Question -
I was wondering if you had any experience with PFAPA? My son is 3 years old and has been experiencing the fevers and other symptoms since he was 1. He was finally diagnosed with this in January. My son's fevers have gone all the way to 106.7 degrees, and he has been hospitalized several times. I have heard from many people, and also from research on the internet that having his tonsils out might help. There is only one problem! I have gone to an ENT, and they told me that they didn't really believe in that diagnosis and they wouldn't do a tonsillectomy, because he is only 3. As a child I had the same problems, but was never diagnosed with anything. When I was 3 I had my tonsils taking out, and did much better after, but my mom said it was a fight. When my son has these episodes every four or five weeks, we go through almost an entire bottle of motrin and tylenol because his fevers are so high. I am afraid that all of the motrin and tylenol will take a toll eventually also. When he has these fevers, I have to give him tylenol, then three hours later motrin, then another three hours later tylenol again and so on! Even when he is on the motrin and tylenol, his fevers are still around 102. What would you recommend for me to do? I am lost now! Thank you!
Erica

Answer -
I think you are describing recurrent fevers of undiAgnosed cause but I don't recognize PFAPA. Send me another message telling me what those letters stand for. It is hard to evaluate many procedures in children and their effect because no one will ever know what would have happened to you if you had no had a tonsillectomy. Let me hear.

Answer
 You are describing several diagnoses usually caused by the same organism, usually  a virus. To decide about the tonsillectomy I think you would need several throat cultures that are positive, usually for the streptococcus. I don't think  you need be concerned about the medication being a problem being used for an extended time. On the other hand, I don't think you need to try to get rid of fever except as it might be making the child uncomfortable. These medicines make the body sweat and it evaporates and cool him off. You can do the same with tepid baths, by removing clothing so he can lose heat and at this time of the year, by keeping the air conditioning going. If he has 102 he will sleep; if it is 104 he is usually so uncomfortable you want to do something. All the while be sure he is drinking lots of fluids. If you are in USA every state has a medical school and perhaps a medical center besides. Tell your physician that you would like A second opinion and ask him/her to refer you to such a center. If that doesn't work out call the pediatric deprtment in the school and tell the receptionist your problem. Most medical school are eager to help. Since state medical schools are tax supported the facility is only serving one who is paying for the facility. good luck