26/05/2026
Here’s how to keep a loved one with Rett Syndrome cool during the heatwave
If you love someone with Rett, and are struggling to keep them cool, here are our top tips
You might notice that heatwaves (like the one we’re in right now) just “makes everything worse,” for your loved one.
You’re not wrong. For someone with Rett, heat can:
Increase distress
Make seizures more likely
Disrupt breathing
Worsen neurological symptoms
Destabilise autonomic systems
So, when you say, “everything gets worse when it’s hot,” you’re noticing something very real physiologically.
This is especially important if your loved one has breathing difficulties, because the heat worsens hyperventilation, breath holding, air swallowing, and autonomic instability.
But what can you do about it?
Tip one: prioritize cooling them directly
The reality is that a fan blowing hot air around a 28°C room only goes so far. The most effective places to apply cooling towels, muslin cloths, or cool packs wrapped in fabric, are the neck, the upper chest, the wrists, and the feet.
It might also help to fill a spray bottle with water or give your loved one a cold footbath.
Tip two: Don’t wait until they look overheated
People with Rett don’t always show that they’re too hot in the ways the rest of us do. Instead, they’ll just suddenly crash, unless you know what to look out for.
Any of the following could be a sign they’re getting a little too hot:
flushing
mottling
irritability
increased tone/stiffness
faster breathing
unusual sleepiness
more seizures
increased screaming/vocalisation
Tip three: You have to keep them hydrated, even if they don’t seem dehydrated
Like with overheating, people with Rett don’t always show it if they’re dehydrated.
Try giving frequent, small fluids. You could feed them ice lollies, or even diluted electrolyte drinks if tolerated.
And think about higher-fluid foods like watermelon, cucumber, jelly, yoghurt, etc.
Okay, so you’ve got the basics down. But what else can you do?
Tip four: keep bedrooms cool
Upstairs bedrooms become brutal in UK heatwaves.
Keep the room cool with blackout blinds/curtains shut ALL DAY, as soon as the sun comes up; open windows overnight (when it’s cooler outside); position your fans at the windows to move hot air OUT of the house; use cotton bedding only, and put a cooling mat under the bedsheet (if tolerable).
Tip five: Don’t turn their wheelchair against them
A wheelchair, and a lot of other seating, get hotter than people realise.
This is especially true if the wheelchair has black seating, foam supports, chest straps, or a headrest.
Here are some quick fixes:
muslin barriers
bamboo liners
checking metal clips/buckles
avoiding direct sun on chair
Get gel seating pads
Tip six: prepare for nighttime
After hot days, families often report worse breathing at night, agitation, sweating, screaming, and wakefulness. That makes keeping people cool overnight a priority.
That means:
pre-cooling room before bedtime
cooler bath
hydration before sleep
lighter evening meals
Tip seven: Keep medications in mind:
It’s worth being extra aware if someone takes:
SSRIs
anticholinergics
epilepsy meds
benzodiazepines
clonidine
propranolol etc
Because:
sweating
temperature regulation
hydration
And alertness
..can all shift in heat.
Tip seven: Reduce expectations during hot weather
Some Rett families push through too much because routines matter.
But heatwaves are physiological stressors. You have to prioritise staying cool. And that means giving everyone a bit of a break from activity.
It is OK to cancel plans, reduce physio, shorten outings, and let sleep schedules wobble a bit, if it means keeping everybody cool and healthy.
Tip eight: Keep these extra tips in mind
Okay, this isn’t really a singular tip. We just want to share our favourite low effort/high efficacy tools to stay cool, that didn’t make sense anywhere else on this list.
Cooling towels
USB rechargeable fans
Cooling pillow
Blackout curtains
Spray mist bottle
Electrolyte ice lollies
Cooling mat under fitted sheet
Foot cooling
Remember:
Keep bedrooms cool
Stay ahead of hydration
Cool early, not once distressed
Get more information on keeping your loved ones with Rett cool here: https://www.reverserett.org.uk/how-to-keep-your-loved-one-with-rett-cool-during-the-heatwave/
And stay cool 😎
