A poll on body temperature regulation was taken was taken on this website for one week during April 2012. Primary caregivers responded in regard to Seventy-nine (79) individuals with MECP2 Duplication Syndrome. Ninety-one (91) responses were recorded since some multiple responses were possible if more than one finding was reported. Chart 1 below indicates the percentages of caregivers who reported some unusual findings:
Chart 2 below indicates the specific findings reported:
Almost half (38 out of 79) of respondents agreed with the statement He or she has a low “normal” body temperature at times. If he or she often has a low body temperature below 99.4 or 37.4 rectal temperature or below 98.4 or 37.4 oral temperature] when not sick, please check here.
Almost a third (25/79) of respondents agreed with the statement He or she has episodes of fever at times that do not seem to be caused by an obvious illness. If he or she sometimes runs a fever, without any other signs of acute illness, please check here.
Only one of 79 respondents (less than 1%) agreed with the statement He or she has a high “normal” body temperature If he or she generally has an elevated body temperature [above 99.6 F or above 37.5 rectal temperature or above 98.6 F or 37.0 C oral temperature] when not sick, please check here.
Twelve (about 18%) of the respondents reported Other things that that they believed might indicate body temperature regulation problems. If you have noticed anything else unusual related to body temperature, please describe it briefly here. This can be your only response or it can be in addition to other responses.
These other responses included:
Gets cold very easily
Easily gets hot or cold.
Gets really hot or chilled easily
problem with keeping up body temperature with bathing, swimming, changing etc.
cant handle very hot or cold temperatures outside. nothing else unusual
When it gets cold out, his hands turn purple & stay cold even after he is warm
If a room/outdoors is too warm cannot gets feverish.
struggles to regulate body temperature in weather extremes.
exhibits unusual ‘hot spots’ on his body when his body temperature is norm
diagnosed with Reynaud phenomenon
Has episodes of bright red forearms and hot to touch. Always has extremely cold hands and feet
Most people who responded to this study believed that they saw one or more indications of temperature regulation difficulties. The most frequently cited issue was related to lower than normal b0dy temperatures, low temperatures were identified as a problem 38 times as frequently as high temperatures in the absence of sickness. Episodes of fever without any apparent cause were also frequently identified as a problem.
Temperature regulation difficulties issues have not frequently been described as an characteristic of MECP2 duplication syndrome. This is not a scientific study, and they results could be affected by self-selection of respondents. Future researchers may want to look more closely at temperature regulation issues.