? about doing T&A but not having mouth sores or swollen tonsils

[Guest guest]

Hello group - four year mom member here, w/ a son Joe, age 5, w/ . 

This diagnosis was by two different doctors, one in NC and one in TN.  The

TN dr. is Dr. Lawton at Vanderbilt who has many years of experience w/ periodic

fevers and did not recommend genetic testing since Joe had no other symptoms of

other PFS, like a rash, and he did not have a neutrophil count indicative of

cyclic neutropenia based on his bloodwork.  We tried cimitedine daily for 6

months w/ no improvement, tried the acai juice for about 30 days w/ no help, and

we currently treat the fevers w/ small doses of prednisone.  We've been through

cycles where the fevers got closer together so we stopped the pred. usage and

only used motrin/tylenol after that.  The cycles would then spread out BUT

we've NEVER had more than a 7 week break between fevers. Joe has had a total of

55 fever cycles!

 

Anyway, w/ Joe's four-year anniversary of and no end in sight, we are

seriously considering a T & A.  My husband and I are typically very anti-surgery

unless it's absolutely necessary but due to the recent study results posted on

this board indicating success, we are becoming convinced that the surgery would

be the best thing for Joe and our family.  My question is this....if a

child has NO evidence of mouth sores, canker sores, swollen tonsils, etc. like

our Joe, will the T & A success rate of stopping the fevers still be high?  I

would be extremely interested in anyone sharing this piece of information w/ us

to try to solidify our decision to have this elective surgery performed.

 

Thank you very much.

Kathleen

Chattanooga, TN

mom of Joe, age 5 - , and Ben, age 3