Infectious Disease Appointment

Ella wanted to eat at the Flying Biscuit after her appointment!  So of course her wish was granted!  Little bit of crazy hair because of our sad little fit during our blood work :( 

We are very glad that appointment is over and behind us. Ella was a very brave girl!  Here's a summary of her appointment -

We met with a fairly new doctor first. She was wonderful with Ella. Ella has some anxiety (inherited from me of course) and gets very nervous at doctor appointments and anything that is new to her. The doctor talked to us for almost an hour about Ella's symptoms and past infections. Ella then needed to have a pretty standard basic physical exam. We then met with the senior infectious disease doctor and talked about what she thought the diagnosis is and where we go from there.

Basically, she is 99% positive Ella has pfapa (again there is no test out there that 100% diagnoses it - based on documentation and blood work and frequent doctor visits). She did want to run one more blood test on Ella's SED rate to rule out another syndrome. We will hear back from them in a week with those results. However, since the doctor felt very confident that Ella has pfapa we discussed her treatment plan. She does want us to try the prednisone for a while to see how Ella responds. She was not leaning towards removal of tonsils because of studies she has read saying the tonsils are important for the immune system. I am not anywhere close to being a doctor or any medical professional, however, I have read just about everything out there on pfapa - from informational sites to tons of personal stories. And I like what I read in regards to the success rate of removing the tonsils.

Many have said that infectious disease specialists are not an advocate for removing tonsils but other specialists are in regards to pfapa. So our journey obviously continues with getting a total cure for Ella if that can happen before she outgrows this. We, of course, are going to listen to the doctor and try the prednisone but if Ella's symptoms occur at a much more frequent rate then we will speak to yet another specialist and our pediatrician and see what we should do. Bottom line is we are taking steps towards fixing this for Ella and at least I feel one step closer to that goal. And most importantly we wanted the specialists' diagnosis!!

The doctor also confirmed that Ella has slightly swollen nodes on her neck and 2 sores in her mouth. An episode is likely to occur this week and when her fever reaches 101 we will give her one single dose of prednisone and see what happens!

Will keep you updated!  Thanks for the prayers!!!  Keep them coming :)