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Scleroderma & Raynaud's UK (SRUK)

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hi has anyone know of any children suffering with raynauds .

roberts1 profile image
15 Replies

hi my daughter who is only eight has been suffering with raynauds for about a year now and she suffers really bad through the winter with it ,she cries with pain and it breaks my heart havin to send her to school when its cold and she is in pain .

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roberts1 profile image
roberts1
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15 Replies
SandraMarie profile image
SandraMarie

Obviously make sure she wears warm gloves/mittens whilst outside. Then I've found keeping the wrists warm with a closefitting cuff on a cardi or even cotton sweatbands work as well . So long as fibres are natural not synthetic (much better for warmth) I reached this conclusion after remembering that in cookery class at school we were always told to run cold water on wrists to cool the hands ,so I presumed the same principal would apply in reverse; warm wrists =warm hands.

roberts1 profile image
roberts1

hi yeah she always wears gloves but they dont help ,the doctor told us yesterday she needs to wear leather gloves not woolen ones .but i dont know wear to get them from for kids .

Kate2 profile image
Kate2 in reply to roberts1

HAT don't forget her hat. You lose more heat through your head than anyplace. Let her pick out a few in her favorite colors and styles. And scarfs are in! I feel her pain. I couldn't believe how fast and how painful my hands became on Sunday at 40 degrees while some folks weren't even wearing a coat.

roberts1 profile image
roberts1 in reply to Kate2

yeah i bought her a hat yesterday .

Anteater profile image
Anteater

Insulated gloves are the best or even mittens - Silk gloves to wear under the glove will help - Sheepskin (expensive but well worth it) or some really good ski gloves for children with feather and down - Try TK MAX they have a lot of ski wear in stock at the moment and VERY reasonably priced. I have tried leather gloves but they don't keep the hands/fingers warm or the other thing you can look for is heated gloves - search the internet xxx Good luck xx

roberts1 profile image
roberts1 in reply to Anteater

yeah thankyou ill have a look than thankyou .

zenabb profile image
zenabb

I have heard of several children with Raunaud's though they are in the minority. Ask the RSA, they have had articles in the past in "Hot News".

Does your daughter have a specialist?

roberts1 profile image
roberts1 in reply to zenabb

yeah ill give them a try thanks .no my daughter dosnt have a specialist at th moment .

clogsy profile image
clogsy

Try re-heatable hand warmers in the gloves. They are not too hot and soo don't burn the skin and only have to be heated in boiling water to reactivate them. I found these have helped a lot with me at college and only cost me £2 each! I know it's a pain trying to dress up warm for school and I can't say I enjoy it either but thermal vests are great aswell. I found that wearing a vest on preserves my body heat and is not noticable under uniform. I hope this helps.

roberts1 profile image
roberts1 in reply to clogsy

yeah it will do thankyou .

kfjgjlgyug profile image
kfjgjlgyug

I was diagnosed with Raynaud's when I was ten or eleven, so I might be able to provide some insight. If your daughter is anything like I was, she doesn't like wearing shoes or gloves. I was always barefoot and running around, and wearing shoes and socks that worked for me was difficult. She has to change her habits. I know not everyone is like this, but I bundle up a lot at night (3 blankets, two comforters, pjs and thick socks), and wake up quite warm. I can not generate that heat again throughout the day... So I have to try to conserve what I have! If she doesn't shower in the morning, make sure she puts gloves/socks on RIGHT after she gets out of bed. If I walk around the house with just socks for even just a few minutes (without uggs), I am unable to generate enough heat to be comfortable for the rest of the day unless I take a bath or shower and put socks and uggs on right afterward.

I had to throw fashion out the door and that meant, in part, wearing uggs most months of the year. Uggs and diabetic socks put on immediately after I shower are the only things that keep attacks at bay. It isn't fun, and I get crazy envious of girls wearing pretty flats in the springtime, but such is life.

Good luck to you both!

roberts1 profile image
roberts1

yeah my daughter does where socks but i have a job telling her to wear slippers though.my daughter cant wear to many layers on her feet and hands because it makes her worse if she gets to warm it can be painfull for her .

lisathomas profile image
lisathomas

hiya ive got raynauds n my son has recently got it now i was just readin the coments about the gloves n nothin works on me but i will defo try the leather ones c if they do thanx....

shellharr profile image
shellharr

hi i believe my daughter has raynauds too she is 9.It started about 2 years ago when she had chillblains . Her fingers and toes go blue but she says they re not too painful thankfully . My husband also has raynauds and so does his sister but the GP says it isnt hereditary ....

OXMOAD profile image
OXMOAD

Hi robert, God bless you both. My 11 year old is having some symptoms on his hands and feet and was just diagnosed with juvenile idopathic (rheumatoid) arthritis in his knees and hip. At least we have a DX and with the proper med, he has slept all night after 14 months. The ortho route was disappointing and showed no problems. Nothing showed on the MRI. We are still waiting on the rest of the blood work. Our son loves getting into warm water when the need arises. Short of that, it is gloves--as soft as they can be. Have knit him some mittens and socks of washable wool that seem to do the best.

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