Thursday, July 5, 2012

mystery fever

Keira woke up last night super agitated and upset.  Her body was rigid and she was kicking the side of her bed so much so that she hurt her ankle.  Also concerning was that Keira told me, "Something is wrong with my eyes, I can't see you very well" :(  That is a red flag that something is going on with her eyes and a possible sign of an OMS flare.

Once I was able to calm her down it was apparent that Keira was running a low grade fever.  It's never good for kids with OMS to be sick and in the midst of trying to wean her off prednisone the anxiety increases.  After we were able to convince her to take some Tylenol (she kept insisting that she only likes her "regular medicine" - which most people would protest) she was able to fall back asleep.

Keira woke up a few times during the night but for the most part was able to rest comfortably.  We did notice that while she was sleeping her body was very "twitchy" which again might be a calling card for OMS.  

We called LPCH this morning and they thought it would be best if we went to PAMF to get some things checked out.  We're pretty familiar with the routine... urine sample, blood draw for CBC and possible swabs for throat and ears.  

Basically, the doctors are looking to rule out a bacterial infection.  We also have to be careful that Keira does not develop an adrenal insufficiency.  Since she has been on steroids for such a long time, her body does not always make the "stress steroids" it might need to handle an infection.  

All the labs came back clear so at this point we think that Keira is just dealing with a viral infection.  No idea where she got it, but we are hoping that it is short lived.  

Unfortunately, there is little we can do about the other OMS symptoms except wait for a few days to see if it stays the same, gets worse or gets better... such a hard thing for a parent to do.  

We, of course, are hoping that it gets better since we are ready to continue weaning her off the prednisone.  Positive thoughts and prayers for our peanut.   :)