How to Treat Periodic Fever Syndrome? When my husband and I got married he had a son. Well his son's mom has another child no kin to my husband. He has periodic fever syndrome. Starting next week the boys are going to be living with my husband and I. I know nothing about the syndrome and would appreciate all the help I can get. Cause it scares me to know that I am getting this little boy who has this disease that I know nothing about. His mom took him to the peditrician who diagnosed him with it but she hasnt done anything else. Tells her to alternate between motrin and tylenol and try and get the fever down herself without taking him to the ER. I'm lost and I need help. What kind of doctor should he be seeing? Any help is greatly greatly appreaciated. Thanks!!!
My son has PFS and that's not an easy answer. I'd normally say do internet research, but there's not much out there unless you are willing to wade through heavy duty dr. reports. Even then you'll basically get clinical mumbo jumbo and symptoms. Tonight I was trying to find statistics on them.......I know they're rare, but how rare? My answer was found in the fact that I couldn't find an answer! Do you know specifically what type of PFS he has? Don't worry if you don't. It's not uncommon. PFS is rare and there are still many, many unanswered questions about it. I was told to be careful with the tylenol and motrin due to stomach ulcers. If I gave my little guy tylenol whenever he had a temp. over 101 he probably wouldn't have a stomach left!! We typically don't medicate until it's 102.5 or 103 depending on how he's acting. Of course, that's with our doctor's direction so check with yours! We go in about every 3 months for check-ups. They always check for developement of arthritis, and now we'll be doing a protein check of his urine 1 to 2 times a year. Our doctor (a rheumatologist) said arthritis and amyloidosis are the two major concerns that we will be on guard for. I hope this gives a start to answering some of your questions. I'd be more than happy to chat more if you want!
Last edited by moderator2; 02-19-2008 at 07:04 PM.
Reason: please delete the quote
I can't tell the difference between PFS and FMF (my son is diagnosed with it), FMF must be one among Periodic diseases. I was at a loss for a year, some of the doctors just kept us visiting them, having finally no idea how to deal with it. Finally we found a doctor who works on genetics and my 2 years old boy was prescribed colchicine. I know it's not completely harmless medicine, but we feel relaxed, as he actually is free from attacks and fever, and as the doctor has told me it prevents the lifethreatening amiloydoses. Just don't be afraid to face it, find the right pediatrician.
bhampton: Call around and find a referral to an infectious disease doctor who is familiar with PFS. It is amazing how much better you will feel after speaking with doctors who are educated on this particular disease. My son is 2 and has been diagnosed and it has been very difficult. We went through several doctors and we finally have a wonderful pediatrician and infectious disease doctor that work together and make life so much easier for us all, especially our son
Re: How to Treat Periodic Fever Syndrome 
