hi just need someone 2 talk to after months and months of pain just found out my 11 year old daughter has raynaulds x

finding it so hard to do just little things ie her coat she has some great friends who help her at school but not aloud out at play time and finds this so hard but after a long hard talk and looking on the web can now understand just asking would i get any help with her as still young and im mum and should be helping her but my gas bill is so high as keeping hr warm all the time many thanks for any help xxxx

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  • Hi,

    This can absolutely very very annoying. Not being allowed outside to play also seems a bit...harsh considering that exercise is generally good for the hands and therefore circulation. Purchase a set of thermal gloves, there are even battery heated ones out there that can be useful. I'm surprised that the school doesn't let her and some friends use the school hall for exercise, which can be a great help.

    You might need to target the gas a little if you're struggling. It may mean that some points you won't be able to heat the property at all. In fact you will have to cut back in some areas so that you can focus on when she is around. It might also be wise to pick up microwavable wheat packs that she can play with and use to keep warm. (There are child friendly plushies on the RSA shop website, which would be really useful).

    Considering the difficulties it's worth asking the CAB whether there are certain benefits you might be entitled to. Though you might need support from your doctor.

  • Hi, my daughter is also 11 and has had raynauds since she was 4. Agree with above answers. We bought our daughter thermal gloves and we also got some reusable handwarmers which she uses for playtime, activating them as she goes out and that really helps. But we negotiated with school if she gets cold she can go inside with a friend. Also lots of layers, she wears a vest, long sleeves top then other clothes on top. She is also allowed gloves in the classroom Incase it gets cold. In the house, keep a room warm, we got a oil heater which is cheap to run but warms a room quickly and the room holds the heat in. It can be very painful for them. She has learnt how to cope with the condition over time and knows her body and warning signs. school respect this and do listen, if she says she is cold she is allowed to be inside or add layers as required etc. If it is really troublesome, ask your gp for a referral to a paediatrician, for an assessment. Good luck.

  • Bless her it's so tough & as an adult it is hard enough & you looking on but be so hard too .....I do hope her teachers are understanding & your daughter feels she can say how she is feeling to the adults during the day. Pwerhaps you can advise the teachers of inforamtion websites to look at & leaflets so they can understand more of what is happenong ... the RSA have leaflets etc

    All the best xxx

  • Might be worth enquiring about Disability Living Allowance as you can claim this for children as well as adults. I know they are looking at changing this soon but might be worth a look. You can claim on behalf of someone and I was advised when completing the form to go on the worst day scenario. All the best xx

  • Hi, i was born with the condition and although i was told i had it - it didnt actually start affecting me until i reached around 14.

    it may be worth it to talk to your daughter and find out the extent of the syndrome and indeed if it is limiting her daily activities put bigger steps in but i suggest normal gloves and just making the teachers aware of her condition so they allow her a warm place to go if she felt too cold ( i used to visit the library) that way she does not become alienated away from friends and she has the ability to take some control and ownership of the condition.

    Also i know its probably not what you want to hear but ive found its got worse dramatically over the past few years (im still only 19) and tbh im getting to the point where the medication isnt having a big enough impact and i may start considering stronger treatment.

    I hope this helps and if you have any questions and would like my opinion feel free to ask!!

    P.S. my mum used to always make me wear ski jackets and sallepettes (dont know how to spell) and they were good as useless- ski jackets are only snow proof!! i just felt like a wolly and resented my mum for making me wear them!

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