We met with the infectious disease specialist today at Akron Children’s Hospital. He was really cool and Emmett really liked him.
Basically, he’s taking a very conservative approach, and I really like it.
Basically, before we assume anything and while we are waiting for the blood work and chromosomal micro array results to come back, we stop the Prednisone.
He wants is to document his temperature twice a day, every day at the same time. We are also supposed to take pictures of Emmett‘s tongue as well. Basically, we are wanting to see what his body’s average temperature is throughout the month.
We also need to see what his tongue looks like throughout the month as well. This will show us if there is a correlation between his body temperature and the mouth sores.
We are both stop the Prednisone because not only does it hurt his immune system but it also hides the symptoms while leaving the root cause intact. We need to make sure that we aren’t missing any other symptoms or making anything worse.
Lizze and I are both happy with this approach because it will allow the dust to settle and hopefully give us a better idea of what’s going on.
We also need to see what the very detailed genetic work up is going to show. We may find our answers when the results come in.
While Emmett is often miserable during these out breaks, he doesn’t appear to be in any obvious pain. Also, because the shape and size of the sores can change so rapidly, it may not be a systemic issue and may be isolated to his mouth and not actually tied to the PFAPA.
So that’s that. We haven’t learned anything really new but are taking a safe, conservation approach. We are stepping back and looking at everything again to see of we missed anything.
For now, we document and wait.
**Thanks for reading**
-Lost and Tired
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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂