So disappointed

[Guest guest]

We, like so many here have been so frustrated over the years. It

took us 4 years to get out of the 'virus' mode with our ped and

finally saw a ID specialist at Vanderbilt (A coworker of Dr )

and got past the cyclical neutropenia testing and have a diagnosis

of for now. We have started prednisone to treat it which

works like magic, however the fevers are coming at an alarming

rate. We started it the beginning of the month. Before prednisone

they were coming every 2-3 weeks. After the first try, the next

fever was 1.5 weeks after the last. We gave the prednisone with

that one too. Now Zachary got his fever 4.5 days after the last. :

( Our ID doc was skeptical that it was a episode, but I felt

it was, so I gave the prednisone (more to 'test' if it was), and

sure enough every ache and pain and fever disappeared after a couple

of hours. If they continue like this (we are going to try a few

more times) then we will not continue the prednisone treatment of

course. I am so sad though as this was our only option to relieve

him of these fevers.

If they continue every week, also our ID doc wants to see us during

a fever. I think my husband and I have decided to start the process

of getting to the NIH. His 'symptoms' and cycles are pretty

abnormal than the usual and our ID doc supports us to go up

there if we wish.

Deanna

mom to Zachary 4.5 yrs

Kalla 2.5 yrs

Micah 10mos

Huntsville, AL