Any help with 2 year old please - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Any help with 2 year old please

confusedmum26 profile image
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Hi,my 2 year old daughter has raynauds disease.for the past month she has been very ill,temperature going upto 41 during the nights.when admitted to hospital they found her white blood cell count to be high but other than that nothing could be found.we are waiting on more results from blood tests for rare diseases etc.I have been keeping a temperature chart since,every 3 hours and it never goes above 35.6,usual temperature is 34.4. Is this normal is raynauds?should she be ill this often and is there anything I should be asking for her to be tested for?any help would be greatly appreciated.thanks xx

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confusedmum26 profile image
confusedmum26

Also she's already on nifedipine 3x daily

trunchalobesity profile image
trunchalobesity

H i I don't think it is Raynauds as the core temperature remains normal in most cases. Indeed Raynauds Phenonomen is triggered by the body trying to maintain its core temperature so it constricts the blood vessels to the extremities in order to protect the main organs.

I am a Mother of three girls and I would be unhappy with their temperature being so low. I would go back to your GP and show them your chart and ask for a follow up with a paediatrician asap. In the meantime keep her warm and give her plenty of warm fluids. Keep her off anything like Calpol that contains paracetemol as these are often given to reduce temperate in infants.

In addition she is young enough to still have her own health visiter, please contact her as she will have day to day contact with infants unlike a GP. They are professionals and may just give you the reassurance you need.

Good luck and best wishes for you both.

confusedmum26 profile image
confusedmum26 in reply to trunchalobesity

Thank you for your reply. She does also have the raynauds attacks,she has done since birthday.I'm not sure but can u add photos on here?I would love to see what other raynauds sufferers think of it.I take photos sometimes just to show the consultant. She is under a rheumatologist who we actually went to see today and he doesn't seem worried about her temperature being so low.I'm still not 100% convinced this is normal and think 34 is a very low temperature.I also don't think it's right for her to be pretty much constantly ill with colds and coughs but she has had so many blood tests,scans of the liver,stomach and spleen,chests xrays and all they found is a heart murmur and rhino virus(common cold) so I don't know what else I could ask them to do.

To be honest my gp and health visitor are hopeless.maybe I just need to trust the rheumatologist and believe that she is fine.what do u think?

Thank you

trunchalobesity profile image
trunchalobesity in reply to confusedmum26

Raynauds attacks are to protect the core temperature and the organs so can be helpful. I had primary raynauds as a child and I think you can grow out of it. Primary raynauds isn't usually linked to secondary raynauds and is not usually linked to secondary auto immune disease. You mention that she has a heart murmur have they investigated this? Sometimes small holes in the heart can cause murmurs. They often if small correct themselves others need surgery but they can cause circulatory problems. Perhaps look this up it may give you a pointer and could perhaps be worth following up.

Babies with holes in their heart are often totally fine but can be blue and cold.

Take care

Dear Confused, My daughter has had Raynaud's most of her life. She was sick a lot when she was young, with chronic colds. It would take her on average 2 weeks to get over each cold. I know that you probably know that common illnesses take longer to get over when encumbered with autoimmune disease.

Read whatever you can to this end about fluctuating temperatures and chronic common ailments in children with autoimmune disease, and symptoms of juvenile autoimmune diseases.

Look into medical journals online. Reading will inform you, in a way that you will be able to ask better, confident questions of your gp or rheumatologist. If you or someone you know can help you, look also into Google Scholar. It can be daunting, but it is a myriad of medical avenues.

Best Wishes,

berrys4sal

confusedmum26 profile image
confusedmum26

Thank you for your replys. Just an update,she is still suffering with temperatures that last 2-7 days long every 1-2 weeks,she has had many blood tests and so far nothing has been found. The raynauds attacks seem to be getting worse aswel which I suppose is down to the cold weather. Time to stay indoors with heating and blankets as much as possible now.

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