We haven't even hit the record highs expected this weekend and Grace has already shown signs of heat intolerance. Just stepping out the door, into the heat, shuts Grace down. She becomes instantly quiet, a blank stare takes over her face and she doesn't respond to interaction. It's like the heat throws an invisibility cloak over her and she can't take or give anything.
From http://www.mitoaction.org/blog/cool-ideas:
...Mito patients often find that hot weather worsens all of
their autonomic symptoms, such as flushing, pallor, irregular heart rate, and
even gut dysmotility. Hot weather can also worsen non-autonomic symptoms such
as seizures, muscle pain and cramping, fatigue, and behavior (irritability,
hyperactivity, non-compliance, etc.). In short, it is very common for the
person with mitochondrial disease to "wilt" in the heat like a
delicate flower needing to be watered...
What mitoaction.org suggests:
Minimize outdoor exposure in warm weather, and be prudent in
planning for outings and trips. Recognize the increased energy demand that heat
creates for any individual with a mitochondrial disorder. Fluids (including fruits
and vegetables) are critically important in warm weather, as are the other
cornerstones of Mito management, nutrition and rest.
How can we help the body to stay cool? Air conditioning,
misting the skin with water and using a fan are simple strategies to cope with
the heat. In
addition, use of a cooling vest may aid a person to keep a stable body
temperature by using evaporative techniques.
What we do for Grace:
We minimize her time outside during the heat of the day- doesn't break our hearts. We are hot too! If we go outside, we only go to play in water or get into an air conditioned van. We go swimming in the cool public pool. We use a spray bottle of water to keep her cool. If we have to be out and can't get into any water, we practically drench Grace with water and fan her to keep her cool. I have also packed soft ice packs around her in her stroller.
Mito
patients often find that hot weather worsens all of their autonomic
symptoms, such as flushing, pallor, irregular heart rate, and even gut
dysmotility. Hot weather can also worsen non-autonomic symptoms such as
seizures, muscle pain and cramping, fatigue, and behavior (irritability,
hyperactivity, non-compliance, etc.). In short, it is very common for
the person with mitochondrial disease to "wilt" in the heat like a
delicate flower needing to be watered! - See more at:
http://www.mitoaction.org/blog/cool-ideas#sthash.BlrTwr8C.dpuf
Mito
patients often find that hot weather worsens all of their autonomic
symptoms, such as flushing, pallor, irregular heart rate, and even gut
dysmotility. Hot weather can also worsen non-autonomic symptoms such as
seizures, muscle pain and cramping, fatigue, and behavior (irritability,
hyperactivity, non-compliance, etc.). In short, it is very common for
the person with mitochondrial disease to "wilt" in the heat like a
delicate flower needing to be watered! - See more at:
http://www.mitoaction.org/blog/cool-ideas#sthash.BlrTwr8C.dpuf
