How We Manage Our Daughter’s Temperature Regulation Issues at School

A school health plan helps this teen with Rett syndrome maintain physical stability

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by Jackie Babiarz |

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Many people with Rett syndrome have issues with regulating their temperature, circulation, mood, breathing, and heart rate, which can also cause problems of anxiety, sleep, and fine and gross motor skills.

My teenage daughter with Rett syndrome, Cammy, has many of these regulation issues. Some have been obstacles since she experienced a developmental regression between 6 and 18 months old, while others only presented themselves as she grew older.

Cammy has had temperature regulation issues since before she was diagnosed with Rett syndrome at almost 2 years old. She seems to overheat more quickly than her cousins of the same age, and her hands and feet get colder faster. We learned why after her diagnosis.

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Her school health plan states that she requires an air-conditioned classroom and bus. Outside temperature checks are critical if outdoor activities are planned because she may not be able to participate. We do not want Cammy outside at school if the temperature is above 80 degrees and humid. Cammy will fall asleep, become pale, and possibly shake when she becomes overheated.

If she does have an episode where she grows pale and clammy and looks as though she’s going to pass out, we quickly bring her into the shade or indoors. We remove any orthopedic braces she might be wearing. Then we give her coconut water or Gatorade through her feeding tube, as it is crucial to keep her hydrated. We check and monitor her oxygen saturation as well. Cammy generally perks back up with these interventions.

We are also unable to take her outside for an extended period when it’s really cold. We noted in her school plan that she can’t go outside if it’s below 55 degrees. When it’s too cold, her body immediately shows signs, such as her lips turning purple.

For many people, it’s common for extremities, especially the fingers and toes, to get cold first. The same is true for Cammy. However, a unique symptom she experiences is that one foot will be extremely cold while the other is room temperature. We have no idea why this phenomenon occurs. But if it’s very cold, both of her feet will be freezing, even if she has two pairs of socks on.

Living in Chicagoland, which has extreme temperatures, both cold and hot, is not ideal for those afflicted with temperature regulation issues. As the weather changes drastically and quickly, so does Cammy’s body. We take precautions to ensure she remains as stable as possible.


Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

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