Infectious Disease: Looking for answers

We will be seeing the infectious disease specialist today at Akron Children’s Hospital.  The reason for this visit has to do with Emmett‘s fever disorder. 

This disorder and the horrible mouth sores that come will each flare up are out of control and not responding to the medications. 

Case in point.  Emmett is on his 3rd fever cycle in the last month.  We have never had back to back to back flare ups,  ever. We typically see about 3 weeks between these cycles. This tells us that something is not right. 

The only treatment is Prednisone. However, he can’t safely take Prednisone as often as he would need to in order to manage these cycles.

Prednisone suppresses the immune system and leaves him susceptible to things like pneumonia,  which he had a few weeks back. We’re hoping that we can find some answers and hopefully a safer treatment plan for Emmett.  Something that will reduce or eliminate these very painful flares without causing long term damage.

Wish us luck.  I will let you all know how it works out.

Thanks for all your thoughts and prayers.

**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. 🙂

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Heather Melson

Rob,

I interviewed a little girl on the autism spectrum a month ago, and she suffers from Ecto-Dermal Dysplasia, which means she can't regulate her body temperature. Could this be what's ailing your little Emmett?

Heather Melson

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