How to cope with snow with a baby raynauds sufferer?

[confusedmum26]

just wondering how people manage with snow?can you go out in it or is it best to keep my 18 month old indoors? She's on nipedifine and that has brought down the number and intensity of attacks so will she be ok to play in the snow or isit dangerous for her? I'm still learning . Thank you for any replies x

[dramatic]

Hi,

My daughter had her 1st raynauds attack at 5, which obviously is a bit older and she was able to know when an attack was starting and she used to come in straight away. She was not able to tolerate it for long. Your baby is very young to have raynauds, i thought my daughter at 5 was young! is it primary or secondary raynauds ? Primary generally is living with it and managing it, secondary is more concerning for additional problems. If its secondary I would be very cautious esp at such a young age, and that fact she is on nifedipine must mean the attacks are bad so use common sense in any case.

However snow is important to children so if you do decide to let her experience it then My advice would be to wrap her in lots of layers from top to toes , my daughter used to have up to 5 or 6 layers when it was very cold. Try and get thermal socks/underwear/ fleecy snow boots. i found feet was usually the 1st area to go cold. There are special gloves you can get from the RSA however they may not be small enough for her so again get fleece type ones and I would put gloves on first and have mittens on top. Good head wear is really important as most heat is lost through the head. Snow suits/skiing outfits will be thermal and keep her warm. Hand earners are good, again you can get reusable ones from the RSA -as she's a baby have gloves on 1st then hand warmers on top so they are not next to her skin. Keep it short and sharp and close to being able to get back indoors quickly. She won't know when an attack Is starting and prevention better than an attack kicking off.

Has she been seen by a paediatrician and fully assessed? I am assuming as she is so young she will have been, if not ask your gp for a referral. If you do have any questions or are unsure then ask them for their advice , if you don't have an appointment soon, ring the secretary and she can ask the question and ring you back with advice. Hope that helps

[Serendipity16]

When I was little I had my first attack about 4 but even the doctor was not sure what it was then. Many layers of socks and thick boots should help. When I was a little older I made snow statues with gloves on and came in when my hands got numb but thick gloves over thin gloves might help just to be out in it. Good luck

[confusedmum26]

Thanks both,I think it's primary raynauds,she's too young for some tests atm.it's all still quite confusing to me. She does have quite severe attacks which she has done since she was born but only got diagnosed at 10 months old.we are slowly learning to manage it and atm she already wears thermals under her clothing,2 pairs of socks,2 pairs of gloves and lots of layers .yes that's the problem I find nowhere does anything small enough for her.she's under a rheumatologist but I never know what questions to ask etc.

Also how does everyone manage financially with heating costs,I can spend £70 a week in gas and being a single parent in college full time I'm finding it very hard to keep up with this .....thank u again

[nettie545]

Dear confused Mum. I should think if she is suffering from Raynaud's, then going out in the snow is the last thing to do. I have Raynaud's and going out in the cold really affects my hands and feet. Keeping the baby warm is very important. It's not good enough just to keep hands and feet warm, her body should have close-fitting, long sleeved vests on and then a baby-grown on as well and if you really have to go out, a pair of socks on top of that with a cardigan and a jacket. Keeping her head warm is very important as babies lose a lot of heat through their heads. I wasn't even aware that babies could have Raynauds. Where do you live and who diagnosed her with this? I have a 1 year old twin granddaughter who has begun to have blue hands, lips and feet and I'm wondering if these are symptoms of Raynauds. Could you tell me more about your baby's symptoms please. Lyn

[confusedmum26]

I live in south Wales,a consultant at the heath hospital in Cardiff diagnosed her.it took a long time to get her diagnosed,I had never heard of it and they told me it is very rare for children especially under the age of 2 to have it.her hands turn blue/purple to almost black then her feet,legs,arms and face turn blue aswel.on a severe attack her lips also turn blue.she cannot use her hands at this time and for a while after.she seems to be in a lot of pain as she cries ,is very lethargic and won't do anything atall.since on the nifedipine though the attacks ain't as bad and now the colour change is less severe and with managing the condition it doesn't happen so often.hope that helps

[graygirl1]

Hello confusedmum26,

Try not to panic. You will soon learn more about this and how to help your lovely baby girl. She is so very young and it must break your heart to see her so cold. Raynaud's is troublesome but with help you will be able to manage as time goes on. Just hug baby and wrap her up warm and continue to shower her with love.

I have nothing much to add to Dramatic's very sound and wise advise. Allow your daughter to play outdoors a little spell at a time and monitor her closely. She has to get fresh air to and play with other children.

To repeat, try not to panic too much. You will soon be able to manage well. There's much information to be found here and from the RSA.

In the meantime, I wish you and your baby girl and the rest of the family all the best for the future and look forward to hearing how you're all getting on via this forum.

Graygirl1

[dramatic]

I'm pleased she is under a rheumatologist, they should keep a close eye on her and I'm glad the medication seems to help. My daughter is now 12, she has been on methotrexate for a few years as her raynauds is due to a related condition and it has improved. Her attacks are fewer now and she has learnt prevention is the best way but it doesn't stop her having fun! Hopefully as your little one gets older the same will happen to her! Remember, wrap her up, keep her warm and Good luck!

[confusedmum26]

Hi,I don't know if any of you are still on here but I'm hopeful that you are.I need some advice if anyone can help me please.lately my daughter has been very ill constantly with colds,coughs etc.she was admitted to hospital and has had loads of bloods tests done which we are still waiting for the results.I've been monitoring her temperature since and it rarely goes above 34.is this normal with raynauds?and isit common to constantly be ill with it?I do my best to keep her warm,thermals,layers, wheatie teddys etc and from the outside she seems warm as her skin gets sweaty/clammy but her temperature (ear thermometer) shows 34-35° .Any help is greatly appreciated.thank you x