I am Beth Ann and I have been reading your questions on the cyclical (recurrent) fevers your children have been having. I have an answer and was fortuntate enough to stumble on to it when I was doing research for my daughter. It's called Periodic Fever, Aphthous stomatitis, Pharyngitis, and Adenitis (PFAPA). It has been researched for over 20 years but a lot of Dr's aren't aware of it and try to dismiss it as a virus and say they will outgrow it. There is a great group with thousands of other parents discussing this very fever, how they deal with it , Dr's they see and medication to control it. It is run by an RN whose child has PFPAP I suggest you check it out http://groups.yahoo.com/group/PFAPA/
My 3yr old has the cyclical fever every 4 weeks (28 days to be exact) like clock work. I went and saw Dr. Shapiro at Yale New Haven Children's Hospital and that was a TOTAL waste of my time. He said its a virus like any other and she probably caught it from daycare or a family member. He was very dismissive and didn't like that I came in challenging him on PFAPA which he didn't know anything about. All he said was the symptoms didn't match. Ugh, very frustrating. He also told me not to take her temperature and just send her to school and see if I get a call. What kind of advice is that from a specialist? She goes from 0 - 103.5 fever and I am just suppose to send her to school? He should NOT be seeing children because he does not care about her well being. Once I am able to get medication to help manage or halt the fevers (which there are 3 - Predisone, Cimetidine and Singulair) I will be writing a letter to him and the hospital.
Let me know if there is anything else I can do to help but hopefully this is enough to get you started and talking to your Dr.'s. Don't give up there are Dr's out there that take this syndrome serious and care about the well being of a child
I wanted to share my son's story of overcoming PFAPA in the hope that it may help someone's child, who suffers from the same. Here is our story:
My son's recurring fevers started at 6 months of age. Initially the fevers, occurring every 4 to 6 weeks like clock work along with swollen adenoids were his only symptom. No runny nose, cough infection or anything else. The fevers lasted 5 days and did not respond to tylenol and motrin. They would peak at 40'C every 5 hours. We were in despair, my husband was missing so much work, and we could do nothing for our sons suffering! At just over 1 year old he started to have a febrile seizure once during every episode. We were in the ER every month with no help. In August 2008 he had two seizures during one fever episode and spent 5 days in the Calgary Children's Hospital where he had a host of blood work and tests done, along with a brain scan. We were discharged with no answers, only a referral to a pediatrian. At this time I began to do as much reading as I could and learned about PFAPA and it's various treatments but our pediatrician had never heard of it and wouldn't even entertain the idea that he might have it. The pediatrician sent us to an infectious disease specialist who diagnosed him with PFAPA, after just coming back from a conference on it and learning about it for the first time. We were very reluctant to start steriod treatment, and opted to go the route of adenoidectomy (we also read about the ENT in the Washington Post article), although at younger than 2 our son was not yet old enough. So we prepared ourselves to wait.
Now for the good news! At around the same time as the diagnosis, we were contacted by an Upper Cervical Chiropractor in Calgary who had heard of our son's case and asked if he could see him. I was hesitant at first, not even knowing what "Upper Cervical" was and whether a chiropractor could possibly cause more damage than good. However we went ahead... The Dr. explained to us that Upper Cervical chiropractors specialize in the treatment of the very top bone in the spinal column, which encases the brain stem, called the atlas. They take very precise and careful measurements to assess whether it is subluxated (out of place). After performing x-rays on Benjamin it became apparent the his atlas was rotated and shifted over to one side, putting definite pressure on his brain stem. They also found on that very first day that the temperature on one side of the base of his skull was 1'C hotter than the other, another indicator of pressure on the brain stem. The day after his first adjustment, the difference in temperature was less than 0.25'C. Now for the best news! Treatments started at 2 to 3 times per week. The first month, he developed a fever, but it was entirely less severe and lasted only 2 days. He had a very minor seizure. The next fever was 8 weeks later, very mild and manageable with Motrin and no seizure. Then nothing for 3 months. Then a mild fever, but after a visit with the chiropractor, the fever ended after 30 hours. And now we have been fever and seizure free for 5 months! My son is himself again. He only goes to see the chiropractor once a month just to check up and they never adjust him unless there is a need. He loves to visit "Dr. Dave" and we have been so encouraged! If anyone has questions please let me know. I hope this brings encouragment!
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