Went to ID today

[Guest guest]

Well we went back to ID with calendar in hand. He's thinking -

but is going to rule out cyclical nutropenia (spelling?) first by

taking blood again today - and every 2 weeks for the next 6 weeks.

He is also checking SED etc. again.

I brought up NIH and genetic testing for Traps, HIDS and FMF and he

said that Aidan wasn't sick enough to worry about those. And that

typically the only reason that kids go to NIH is because they are

showing some strange symptom that isn't consistent with or any

of the other PFSs.

I know that this goes against everything that I have read here . . .

but he's all I have right now - and he says that his office (the ID

clinic at Cooks Childrens Hospital in Fort Worth gets a kid in

every few months. He says it's more common than people realize.

He gave me a perscription for Pred. but told me not to use it unless

we have a ball game, a test or a vacation or holiday that comes up

when he is fevering. Of course he's only three - so I guess tests

and ballgames are out.

We are meeting back with him in 2 months - I guess to check

progress. He's not leaning towards any genetic testing at this time.

Although he told me that one of the countries experts - Dr. Punaro

in Dallas - on would be able to help us - but there is a wait

time of like 5 months if they even see you. So I know my Ped. is

working on getting us with her . . . which is good.

So - that's my update . . . I guess I can pretty much guess that you

all don't agree with his decision on the Genetic PFS because Aidan

isn't sick enough?

Thanks for reading . . . prayers for all!

Hannah

Aidan - 3 - fevering 15 months

Sid - 5 - fine fine fine