New Member - Northern California

[Guest guest]

Hi. My name is Cassandra and my daughter, Jayden, just turned 3 at

the end of April. She has been fevering consistently since 18

months old, although looking back she began getting fevers at about

9 months. Her pediatrician kept telling us it was viral and also

attributed it to her starting daycare at about age 16 months,

meaning she was being exposed to new germs. Her fevers came at

about every 4-5 weeks, until last fall when they started coming

every 3 weeks. She also started getting ear infections last summer

and had tubes put in early this year. Her ENT diagnosed her

with " tonsilitis " 4 times between Jan and April of this year. I

finally got a referral to a ENT at UCSF in San Francisco, who

immediately predicted that my daughter has . We have been

referred to an Infectious Disease Specialist there and have our

first appointment on 6/20. Her new ENT at UCSF said that her

primary doctors in our town would have probably never figured this

out. While we do not have a true diagnosis yet, my husband and I

are educating ourselves about this syndrome and trying to find other

families who are going through this. Jayden is just getting over an

episode now, which last only 3 days this time and actually went 6

weeks between episodes. We are not medicating her with prednisone

or anything other than Motrin or Tylenol during fevers at this time,

mostly because this is all so new to us and other options

(medications) have not yet been presented to us. Her fevers have

never gone over 104, which it appears we are lucky for.

I look forward to getting to know everyone on this board. It looks

like a great place for support and information.

Take care,

Cassandra

Ukiah, CA