Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent "low-grade" temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient's baseline temperature runs at 96°, such an impression may represent a mistaken conclusion. Autonomic dysregulation article hereWhat this means in practical terms is that yesterday her temperature ranged from 77 degrees (her feet) to 101 degrees (under her arms)...all at the same time.
Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is. She seemed to be doing a better job regulating her temperature.
But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat. We sleep with the house at 66 degrees at night and keep it around 70-72 in the day. It is far easier to keep her warm than it is to keep her cool. At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot. After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board.
So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer. We're going to the zoo next week and it's going to be tricky to keep her cool.