- diagnosis w/ no mouth sores

[Guest guest]

Hi ,

My daughter Ella has been diagnosed with (although she has not

had any of the genetic tests done or been tested for cyclic

neutropenia), and we have never noticed any mouth sores with her

either. She is only 19 months old, so she doesn't really tell us if

she hurts or where. Most of the time she just gets a fever and

there are no other symptoms. A handful of times (I'd say 3 or 4)

she's had swollen tonsils and swollen glands (the swollen tonsils

and glands seem to go hand-in-hand with her). Anyway, when she had

her last fever, I tried to look in her mouth to see if there were

any mouth sores, but she didn't cooperate at all, but again, I've

never noticed any.

mom to Ella, 19 mos.

Annika, 4

Evan, 6

> I had a long chat with our pediatrician who hasn't diagnosed my

daughter with , but

> just a Periodic Fever Syndrome, I guess because my daughter

doesn't get mouth sores. It

> seems to me I've read about several kids on this board who have a

diagnosis but w/

> out the mouth sores or w/ variations in time between fevers. Can

you have a

> diagnosis w/out all four symptoms and w/ fever variations?

>

> This raises questions for me about how is diagnosed. Are

some docs/parents

> opting out of indepth testing (like for neutropenia and genetic

disorders) and diagnosing

> based on history, symptoms and general blood tests? I'm getting

the sense that there is a

> greater variation in how this condition manifests than the name

leads one to believe.

>

>