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.
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This is another one of those things that worries me about school. With all they claim to be aware of and understand, it doesn't take much under the right circumstances, to push my daughter over the limit outside. I attended an "egg drop" at school last year and had to pull her out to take her home when it was very apparent "to me" that she had had to much sun.
Schools seem to be pushing harder these days for results, with less help, as teaching positions and support staff are cut. I wonder how much could fall through the cracks as a result.
I think Terry's fear is totally warranted. People don't notice when Dean just begins to "melt" in the heat. Heck, they barely even believe me when I tell them it will happen, and then they're shocked when it does. I think it's just such a different phenomenon from what most experience that people aren't sure what to do. If it's the slightest bit warm outside, it really affects Dean. And I too have stopped checking, but his baseline temp always used to be 97.3.
My four month old daughter has problems regulating her temperature. She's currently in the NICU and can not come home because of this. The doctors want to try a heating blanket. Will you give me some suggestions or tell me if you have encountered this problem?
SN,
I am so sorry, but I just now saw that your post was lost in a box requiring moderation. I really wasn't ignoring you on purpose. I hope by this time she is home safe with you and doing well. I really don't have any thoughts or advice for you on this issue - PWS kids tend to overheat vs underheat. She wasn't allowed to leave the NICU until she could maintain her own warmth most of the time. When we first brought her home she still had some difficulty, but we would keep her covered up a bit and then remove her blankets as she warmed up.
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