Question - Nettie Faith and now ongoing fevers

[Guest guest]

Hello and Happy New Year, fellow CHARGE parents-

Our baby daughter, Nettie Faith who is 18 months old (with Charge and

portions of Vater) recently had influenza type A (the flu) along with

pneumonia, a UTI and sinusitis. We spent 19 days in the hospital and

left after the 19 days. Nettie was still febrile when we left, but

we agreed to monitor Nettie carefully as an outpatient (ongoing blood

work, stool samples etc.) until the fever resolves itself. Nettie's

fever still has not subsided. She was admitted to the hospital

November 30, came home December 19th, was febrile in the hospital all

those days as well as a few days prior to her admission. On day one

of admission to the hospital Nettie was 102, on day two of Nettie's

hospital stay she was 106 (axillary - because she had anal surgery at

birth we do not do rectal temps). She now gets fevers ranging

anywhere from 101 - 103. We did not have major temperature

abnormalities prior to this illness. Infectious disease doctors are

banging their head against the wall, thinking we should see a

hematologist, but are really not sure what direction to go in.

I am therefore asking you the parents, (who usually know a heck of a

lot more than any doctor) your knowledge, advice, medical insight on

what could be happening.

All your advice and ideas are welcome.

Thank you-

Beth Balsam

Mother to:

Nettie Faith (with CHARGE - 18 months old girl)

Darren - 5 year old boy (identical twin boy)

Noah - 5 year old boy (identical twin boy)

Elaine Deborah Simcha - 3 year old girl