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is a disorder of exclusion. It appears there are a few new members asking

if other disorders should be looked into etc..

YES

A few years ago, it seemed FEW doctors heard of this disorder and were

unfamiliar with ALL the Periodic Fever Syndromes. Lately the word has gotten out

about in the medical community and there appears to be an INFLUX of

children diagnosed RAPIDLY with the disorder without ruling out other illness

which present in a similar fashion.

Read read read....

Periodic Fevers come in an assortment.

FMF is the most common and the genetic mutations were isolated the earliest....

HIDs, TRAPS, NOMID, Muckle Wells are other PFSs which present in a somewhat

similar fashion.

Please GO to the file section and the Links and READ about all of the disorders.

There are genetic markers which can be tested for however depending on the PFS

there are 10-40% of people diagnosed with the other PFS who do not actually have

a KNOWN genetic marker. Research is currently going on at the NIH (National

Institute of Health in Bethesda Md).... and new markers are being isolated.

We have seen NUMEROUS children come to us with a diagnosis of who later

had their diagnosis changed to a genetic disorder. The importance of knowing is

critical as the genetic disorders lead to secondary disorders including vision

loss and kidney failure. So treatment and monitoring is different.

There are also other diseases such as cancer, auto-immune diseases such as JRA,

lupus, chron's etc... which present with periodic fevers and have swollen lymph

nodes and mouth sores may present.

Doctors all of a sudden are labeling people (and little people too!) quite

rapidly. Many will say if Prednisone aborts the fever it is . THIS IS NOT

TRUE. Prednisone WILL work on almost ALL of the fever disorders and may work on

other illness' too... it masks symptoms not ONLY in .

Please advocate for your child and educate yourself. There is an ENORMOUS amount

of information in the file section.

Once you learn and are confident in a diagnosis... (which many of us are still

not) Understand the 3 methods of treatment SPECIFICALLY for (and ONLY FOR

)... the first is Prednisone at onset of fever to abort fever, the second

is Cimetidine over approximately 6 months twice a day every day which works as

an auto-immune regulator in some children aborting the fever OVER time and then

if it works the child remains fever free... and the LAST recommended treatment

is tonsil removal. There is no ACTUAL documentation of how many children have

remained fever free for a LONG period of time however some research states about

30-40 percent of the children do become fever free. HOWEVER follow up has NOT

been more than a year in the studies and we have found here at this site that

there are some children who later on do develop fevers again. HERE we still do

not have good statistics because MANY of these children had the surgery without

genetic studies done and may have a genetic disorder thus fevers return....

The medical community following patients do not recommend tonsil removal

until the 2 other more conservative methods are tried.

Hope this helps... read read read!

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

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