An Introduction from Los Angeles

[Guest guest]

Hello everyone!

My name is Michele. I have three girls, aged 15, 12 and 5. It is my

five year old, , who seems to have a PFS, though I'm not

really sure. Whatever she has is very mild compared to what I have

been reading since being told that she had in October.

's first episode was just before her second birthday. It

consisted of her first mystery temperature, followed by the mouth

sores. I spent the next few episodes being told that she had a virus.

I was told the mouth sores were something that some kids get and that

she would probably continue to get them periodically thoughout her life

following a fever, but that there was nothing abnormal about that. Yet

no one could give me a NAME of anything. The first time, she had the

sores for three weeks and all she could eat was pudding and apple sauce.

As with many of the other children here, she is generally REALLY

healthy. Though she sometimes loses weight with the mouth sores, she

always manages to get it back once they are gone.

I described all of this to a new doctor in the office at her five year

check-up, and she said it sounded like . I did research on it and

joined this group that night. She gave me a prescription for

Prednisone and told me about the possibility of a T & A helping.

I'm not convinced that has , though. She doesn't have

the fevers as often as the other children. Her mouth sores (and one on

the outer corner of her mouth - always the same place) only seem to

happen when I don't control the temperature, such as when the Motrin

runs out in the middle of the night and I sleep through the alarm I set

to get up and give her more. And the mouth sores don't happen DURING

the episode - only after. She does get the high temperatures, but I

can always control them with Motrin. She has no other symptoms at

all. Her last episode was in October; the one before that was in

June. I've been worried, though, for the last month; Several times I

was sure she was getting a temperature, but she didn't - just seemed

listless and cranky for a few days.

When I suggested to the pediatrician that we check for cyclic

neutropenia and the genetic things, she said that wasn't necessary

because of the mildness of her symptoms, that it had to be . Yet

it seems we should be sure, especially with the possibility of FMF. I

know that usually has more symptoms, but I've read elsewhere that in a

small percentage of cases the only childhood symptoms are the fevers.

I'd like to see a specialist, but Los Angeles is so large that I don't

know where to start looking. Is anyone on this board from the Los

Angeles area?

I don't see the need to try the Prednisone when I can so easily control

the fevers with Motrin. Once the Motrin kicks in, you wouldn't even

know she's sick.

I feel silly complaining at all about what has after reading

all of your posts in the past few months. But I want to make sure that

I'm not overlooking anything or under-responding to her symptoms.

Thanks for reading this and any guidance you can provide. I truly feel

that this is a very supportive and helpful community, and I'm glad to

have you available to me.

Michele

Mother to (15), Abigail (12) and (5 - ?)