AIBU to think there must be a reason for being unable to regulate body temp?

[hotchoc2425]

DD, age 9, overheats very easily as she doesnt appear to be able to regulate her body temperature. Winter is OK as she just wears vest top and shorts! In summer she passes out and/or vomits with heat stroke when all her peers are absolutely fine. It is quite scary and limits what she can do in summer and our choice of holidays etc.

I have finally been to GP again and had bloods done which didn't show much just lymphocytes slightly high and iron/vit D slightly low (surprising as on supplements for both the later). Basic thyroid tested and was fine. Aside from this her health is OK but it really is restricting her life during the summer and she wants to join in life and do sports.

Any experience of this or suggestions of tests I can ask for? All females on my side of family including me have auto immune conditions but none of us have overheated and she has no other issues aside from above.

Thank you.

Ah right,today is a Spring day to me, 18 -20 degrees is fine as long as I'm not sitting out in the direct sun. I definitely don't need a jacket though,I'm in a T shirt.

I do think there are varying degrees of normal though and think you might have to accept she runs hot in the same way some people feel the cold all the time.

Personally I'd keep her off for Sports day, I used to keep ds off if it was very warm. His primary school was excellent about keeping them in the shade though.

The not ever feeling cold is very relevant, too. Children may vary in their response to the heat but almost everyone feels cold in the snow.

You probably need a paediatric specialist in metabolic disorders which might be a long road to achieve. Good luck with the paed though.

@dontgobaconmyheart

I was also going to say PoTS - my daughter has EDS & POTS and is also very disabled by it - I am sorry you are too xxx

OP - do check it out and see if it resonates.

'HED is usually inherited as an X-linked recessive genetic trait and is caused by a mutation in the ectodysplasin-A (EDA) gene; in such cases, the disorder is fully expressed in males only. However, females who carry a single copy of the disease gene (heterozygote carriers) may exhibit some of the symptoms and findings associated with the disorder. These may include absence and/or malformation of certain teeth, sparse hair, and/or reduced sweating.'

Note the and/or. She might just have the absence of sweat glands. Easiest way to tell, get a infrared camera. Look at her through it. If she's got X-linked HED her body will have patches that are hotter than other patches. If not she'll look like everyone else- hotter in the middle.

OP - is your daughter hypermobile? You may want to look into EDS.

Tea rose - if she was like me as a child then indoors with a book missing sports day would be a joy however she loves sports and excels in winter and is heartbroken to miss out on any thing active. She wants a future in sport which is not going to be possible when she cant participate for half the year hence the need to sort this- if only she wanted to be an ice skater!

Thanks Matilda - I will look into that and be sure to mention winters and the ski instructors surprise at her feeling hot and never having zipped her jacket up when everyone else had layers on!.

Also, if it's not a sweat gland issue, I presume she's sweating a lot - you are putting salt in her water, aren't you? She'll need electrolytes if she's drinking litres of the stuff over a short period of time. Overhydration can look a lot like heat exhaustion.

That said, I think it's more likely linked to that autoimmune thing from when she ws five.

BbcEssex - No not hypermobile. I will relook at POTS. I am fine now for mobility on medication thx.

Regan - never put salt into her water and no one has ever suggested this. I would want medical guidance on dosage to do this for fear of too much. Never seen signs of sweating but do you see it in 9 year olds? She usually soaks her t-shirt with water which wouldn't help notice. Maybe there is an issue with sweat glands - I will look into this. thx.

As @dontgobaconmyheart suggested, sounds very much like a form of dysautonomia, I would be investigating that as a first port of call. Worth also looking into EDS even if no previous hypermobility issues, people don't always realise that their normal isn't. I also noticed you mention that she is ginger- it would be worth considering albinism. I know that sounds nuts, but we thought we had ginger in the family and have just discovered that it's actually albinism, although I won't go into too much detail.

I’m reluctant to just add “yet another” possible diagnosis to your growing list.

However my friends daughter has been found to have a high level of “brown” fat, something that we all have large amounts of as a baby and it reduces as we grow. It is a type of fat that babies (and small mammals) use to keep themselves warm. Her dd has maintained high levels which has led to a number of symptoms including high body temp, low iron (as brown fat uses up iron from the blood) and low blood sugars (as the fat is constantly burning sugar). She is also very slim.

On the sweating point. My red head DS runs hot and at the end of school in summer would come out of class with hair stuck to his head with sweat. He ruins sunhats by sweating so much it leaves salty tide marks.

If she's really hot, there should be visible signs of sweating. Maybe have a controlled experiment and not let her mist or put water on herself to see?

southbucks - thanks for that as my daughters iron levels were low despite having been on a supplement giving 100% rda for last 6 months which seems odd to me. What has happened with your friends daughter and who and how did they diagnose that? Is that something recognised on the nhs?

ceirrno - the hypermobile kids at gym are far more flexible but I will have a google of your suggestions. thanks.

Amazing what you can learn on MN! Thank you.

It's an odd one in that some kids have only very mild hypermobility but lots of associated EDS symptoms, whilst others can be extremely hyper mobile and never ever have any pain or related adverse symptoms

I have dysautonomia and use ice-packs to stay cool in summer. I've recently tried using Tie Chilly neck coolers (there might be other brands but the basic idea is a wearable ice-pack thing). I've found them very effective and they would probably work for playing sport.

turkeyboots - no she definitely doesn't sweat like that and thinking about it there is a boy in her class that is just like that. No I have never seen her sweat. Would all children sweat - I thought it came with puberty and the few who sweat earlier are the exception?

She actually was diagnosed with the low blood sugars first as a baby. Was treated for hyperinsulinism, glycogen storage disease etc. Endocrine at GOSH passed her to metabolic who found the high brown fat.

You don't necessarily get sweating with dysautonomia, or sometimes get it despite being cold. The point is that the body temperature regulation system is not behaving as it should, if it was, then sweating would correlate more predictably

Another - I had read about the ice packs and was thinking of trying that. We wont get paed referral in time for this summer so I will look into them. Thanks.

southbanks do they treat the brown fat or just blood sugars?
Thanks

I thought it came with puberty and the few who sweat earlier are the exception?

Yes, normally, all children sweat when hot. It's one of the body's cooling mechanisms. The difference is that it doesn't start to smell until puberty, which kickstarts glands in the armpits that produce the pong of BO.

There is a gene on the X Chromosome that sweat glands need in order to work. Girls with one faulty copy of that may have no other symptoms apart from heat intolerance. Each body cell only expresses one of the two x chromosomes, so if she's got that issue, roughly half of her skin will be incapable of sweating. You can see that with an infrared camera- the areas with faulty sweat glands will be hotter. There are other things that can prevent effective sweating though.

Just the blood sugars because that is the main issue. The high temp and high metabolism are just extras.

Me and the two dcs have this. We're a hot sweaty mess at anything above 23 degrees and non functional above 27. I've been known to sit and cry at upper 20s levels, it's so uncomfortable and I feel panicky and can't breathe. I also get heatstroke at the drop of a hat. We went on holiday to north Wales last year and I spent three days stuck in the guesthouse because it was too hot for me to go outside.

I don't think it's necessarily an illness, it's just some people run hot which is probably genetic depending on genetic heritage. We're northern Scotland/Scandinavian heritage.

ineedaknittedhat I think you might be my long lost twin,I'm the same. Last year was unreal,like a nightmare! (It's TeaRose btw,had a NC)

Dunno about OP's kid... none of the theories here fit my experience. Eg., I have a family full of redheads (Scots & Swedish): whole life they live in hot sunny places perfectly fine. I was an overhot person when young but age 36 I turned into a too cold person wearing 4 pairs of socks to bed. Being over-hot is more difficult, agreed. So I suspect OP's child will change.

Am less hypermobile now but still qualify as such. I associate being hypermobile with having low muscle tone, tbh. I'm such a wimp.

More interesting posts thank you. I will consider the sweating thanks.

I needaknittedhat - how do you avoid heat stroke for your kids or do they pass out or stay indoors for summer? We went to Wales last summer too but just missed the heatwave and had the only cold period of last summer which was lucky for Dd.