Pfapa - Rare Disorders Message Board

huntergreen · 07-12-2008, 02:15 PM

My 21 year old daughter has been getting fevers pretty regularly (about every 4 weeks) that hover between 102-105 for about 5 days. Basically that is her only symptom, other than just being generally lethargic and/or irritable. Otherwise, she almost never gets sick.

One time her temperature was almost 107 and we took her to the emergency room after giving her Motrin. By the time we got there it was around 105. There are some 6 doctors in her pediatric practice and she has seen them all. Every time, they say it's just a virus and that it is common for kids to get sick this often. They even tell us not to be worried about a fever of 105 if she seems ok otherwise!

Never, have they been able to tell us what type of virus it is. They suggested it may be Roseola at least 4 times already. Our main pediatrician even said he didn't believe her temperature was ever almost 107 & that our thermometer must be wrong (we've tested it and it's right).

Finally, we insisted that they dig deeper because we don't believe this is normal for a child to get sick so often & with such high fevers, especially since none of the other kids at her day care were getting sick.

I had been web surfing and found info about Persistent Fever Syndrome & asked our doctor if this were a possibility. He said he had not heard of it. Nevertheless, he referred us to a rheumatologist at UCLA medical center. The rheumatologist has sent her blood out to be tested and we are waiting for the results but she suggested (without our prompting) that it could be PFAPA.

We are not of Mediterranean descent so that pretty much rules out FMS. We have never noticed any canker sores and the doctors have never remarked about her throat being inflamed or her lymph nodes being swollen. This brings me to my questions:

Do the other symptoms (canker sores, pharyngitis, swollen glands) have to be present for it to be PFAPA?
How is it detected?
Can it be detected through blood tests?
Are there other types of PFS that do not include these types of symptoms.
Is it contagious to other children (at day care)?

I see a lot of experience on these boards. Hopefully someone can give us some answers.

francis66 · 07-18-2008, 01:24 PM

My daughter was diagnosed a few months ago with PFAPA after 8yrs. of searching on why she was getting fevers every month. Many doctors many antibiotics pushed. We noticed her fevers started around 10mo. In the beginning symptoms wer stomach pain, vomiting, fever. As she got older she would complain of joint pain, headache eyepain now she gets it all along with swollen lymph nodes ulcers on back of throat. Fevers last 3-4days. We are trying Prednesone to see what happens during fevers at this time. There is no blood test for PFAPA. It is not contagious. There are other Periodic Fevers that can be tested for Hyper IgD syndrome,Familia Medditerianian Fever google PFs will show more.She was tested for PFs blood work showed nothing so PFAPA fit her symptoms after other blood work was ruled out. Also CRP levels were checked during fever episode they were very high. Not many docs know about this syndrome yet, its not really being studied yet in the USA.

huntergreen · 07-18-2008, 04:08 PM

So, is it just diagnosed by process of elimination?

francis66 · 07-18-2008, 04:37 PM

Yes,after you find a Doctor that believes in Periodic Fevers he will do the blood work for the different fevers. Then he went through all the Periodic Fevers and their symptoms and that is how we got are answer after eight years. PFAPA is one of the fevers they say that they could grow out of, but I also heard of Adult PFAPA in which they had alot of fevers when they were little it went away in teen years then came back in 20s. You know your child better than anyone. Hang in there. Once you have a name behind the fevers it takes aload off your shoulders, even though we dont know the outcome. How old is your daughter?

huntergreen · 07-19-2008, 05:07 PM

She is 21 months. This has been going on since she was about a year or so. Our pediatrician really just kept ignoring it until we pushed. Then he referred us to UCLA medical center & the doctor there is doing tests. She doesn't have the mouth sores, sore throat or swollen glands but she certainly fits the pattern. It would be nice to have a diagnosis that we can at least treat.