Infectious Disease

Today we took Abby to Children's Hospital for an appointment with an infectious disease doctor.

Over the past 11 months we have been tracking Abby's fever patterns along with her seizures.  Each time we suspect she might be feeling sick we take her temp and record it on our calender.  The seizures we've been documenting this way for several years now.  

Her fever pattern is very erratic, coming and going without warning.  It usually comes with no other symptoms, except an increase in seizure activity.

We took our documentation with us in hopes that this new doc might be able to uncover what is causing the fevers.  After reviewing our notes and a thorough physical exam he came to the conclusion that it isn't clear what the problem is.  Her fever patterns don't indicate an infection as they don't hang around more than a few days at a time.  They are too frequent to be colds or flu's.  There are no rashes, bumps or sores.

This brings us back to her brain.  Because of her encephalopathy it is possible that the part of her brain controlling temperature has been damaged.  How did this happen?  Probably from the bleeding she had in her ventricles during that first week of life.  This bleeding is also the cause of her CP, loss of brain tissue, seizures etc.  We wonder if the prolonged seizures have played a part.

There is no way to definitively diagnose this as being the culprit.  Docs come to this conclusion mostly from family reports, as there are no tests to prove it.

What does this mean?  We could be dealing with fevers + seizures= bad days, indefinitely.

The plan for now is to take her in for further testing if/when she runs a fever above 101 for several days with no apparent reason.

They did a few blood tests today to check for possible hidden inflammation some where in her body, but we don't expect to find any.

Our hearts and bodies feel heavy today.  Hoping for an answer or solution to this issue, but instead coming away with more questions.  It is very draining.

Praying for Abby's comfort and trying to surrender all...