Cindy Beth re: Nettie Faith

January 2, 2004

Dear Beth,

It would seem that the hypothalamus may be affected causing the

temperature regulation difficulties. Have the doctors considered this

part of the anatomy? The hypothalamus can affect the autonomic nervous

system, which according to Dr. Davenport, at the CHARGE 2003

conference in Cleveland, may have some important connections to CHARGE.

From time to time on this list there have been questions about

temperature regulation. If you search the archives, maybe some

pertinent information will surface.

It sounds like the doctors have ruled out further infection at this

time?

You asked about information from parents, and I am sorry not to have

much. The only time our daughter had difficulty with temperature

regulation was when it was very LOW, subnormal, for a period of several

months from about 4 months until about 8 months. Finally it resolved

after she had a fundoplication and she has a normal temperature now

except when sick. When she was 4 months old, she had a condition called

thrombocytopenia which resulted in visits with the hemotologist. That

blood condition ultimately resolved without treatment for her. One

mother formerly on this list, Jeanne McMullen, mentioned many times that

her daughter was running a temperature. Finally after several years,

the doctors identified an immune system problem and her daughter was

subsequently treated for that condition. There are a couple of other

children on the list who have mentioned identified immune system

problems too.

There may be more information in the archives and others currently on

the list may have more information as well.

Here's a website discussing the hypothalamus:

Best wishes to you and your daughter. Please keep us posted. I will be

hoping you gain valuable information and that your daughter's

temperature issues resolve soon.

Mom to Kendra, CHARGE, and Camille

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