Re: Question - Nettie Faith and now ongoing fevers

[Guest guest]

,

I don't have any medical suggestions but you are in my prayers.

Lynn

Question - Nettie Faith and now ongoing fevers

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

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[Guest guest]

,

I am sorry to hear what has been going on. I hope you find some

answers soon. My daughter used to have issues with her temperature also but not

to

the point of where you are at. When she was little she would spike fevers

often of 104 to 106. She either had them due to an illness or for no apparent

reason. As long as she was coherent and acting absolutely normal we took her

to her pediatrician. The other times when she was really ill it was to the

emergency room. Those were usually some infection. But they NEVER lasted more

than a few days.

Patty had fevers so often that somehow finally she burnt out her

hypothalamus. There were some sort of blood tests, including something called

T-cells but for the life of me I don't remember what they are except for

something

to do with her immune system. Patty wasn't able to fight infections the same

as us. But she seems to have grown incredibly strong now.

Because of her numerous high fevers no longer gets fevers, and hasn't

for years but her baseline temp remains within normal. It's hard because she

may have something like an acute ear infection and you'd never know it. The

way we knew she's ill is by her hands and feet turning color, for an ear or

sinus infection there is an odor and a difference in her voice but most of all

there is a change in her behaviors. She is just a crab.

Patty is doing well but again she never had a fever over 103 for an

extended period of time. I don't know if any of this helps. I hope you find

the answers to this soon.

Bonnie, Mom to Kris 21, Patty CHARGE 19, and wife to