Just feel like crying :(

[confusedmum26]

Winter is hitting hard already this year. My daughter is 2 with raynauds since birth. I've dealt with it quite well until now but finding it very difficult this year. The days are so cold already and the nights even worse,heating is costing a fortune meaning other bills are not getting paid and debts are mounting up. How do people manage to keep their house constantly warm and pay everything?! It's so heartbreaking watching her having raynauds attacks (I do everything possible to try to stop them) sometimes I just feel like "why her?"

[catlulu]

Cry - get it out - so sorry, your daughter has this...i am from the US but i believe from other posts that you can get a heating cost help...i would go through the archives to find since this has been discussed...i just bundle myself up and do the best but she is just a toddler!

Wishing you a Happiest of Holidays, Catlulu

[diane09 in reply to catlulu]

Hi I feel so sorry for your daughter I am 47 years old and I am in so much pain, I don't won't to think the pain she is in, I hope you get all the help, I did not get any for over 14 years just keep going back to the docs for checkups

[Lher123]

I am so sorry to hear about your daughter...I wish you the best in finding a solution.

[confusedmum26]

Thank you for your replys. Feeling abit better today,some days it just gets very difficult especially when she can't do all the same things other children her age do, I am dreading the snow!

Thank you both,hope you both have a lovely Christmas

[graygirl1]

Hello Confusedmum26. I can only imagine how your heart must break to see your little girl suffer so and having to worry about keeping the home warm for her. My advice is, call your energy company and explain to them your baby's need for constant warmth and ask if there are any deals available. I am disabled and also suffer with Raynaud's and found my energy company to be fantastic. I think the energy suppliers get a certain amount of government cash in order to help their vulnerable customers and children. You will find your supplier sympathetic, I'm sure. In the meantime, keep the heating on for your baby and the rest of the family and worry about the bill later. They won't cut you off. Legally they cannot do so when under age children are in the home.

I pay by direct debit monthly and find it easier than to wait for the bill which needs to be paid all at once. You can discuss this with your supplier if you have not yet done so. If this is your payment method ask if they can review your account and if possible make your payments less.

Keep in touch with this forum. There are some fantastic folks here with all sorts of experiences and knowledge so you will soon get more helpful advice.

Please, try not to worry too much. The bills will get paid somehow. Most important is that your baby is kept comfortable. Don't be afraid to ask for help when it gets tough and cry when you feel like doing so. Don't bottle things up. Share your concerns. You would be surprised to know how much others care. You and your family are not alone.

I will be thinking of you and your baby and if I come up with any other idea I will be in touch.

Best wishes,

Graygirl1

[StevieJoey]

So sorry your baby has Raynaud's i have it to .I use a a pair of gloves and wrap a heating pad around both hands on med. Just be careful it dont get to hot for her hands if do take them out for a while !That & i keep hot hands in my pockets u can buy them at walmart ! Hope this helps and yes please let electric company know they can help ! Praying for u and your little girl !

[Monika]

I am so sorry that your little one has Raynauds - I know how difficult it is to cope with as an adult so how much more difficult it must be for your daughter. I am thinking of you and praying for you both. I also hope that the energy supplier will be sympathetic to your needs. With much love xxxx

[SRUKadmin Partner]

I am so sorry to hear that, it must be so hard to see your daughter struggle and also to have the struggle of bill on top of this. Have you tried ringing your electricity supplier about this? There is a "warm home discount" they might be able to offer you. It is the decision of the supplier as to whether they will give you it, but some people with Raynaud's have received it in the past, and you would like to think that they would give it to a family that had a young child with Raynaud's. There is a bit more info about it here gov.uk/the-warm-home-discou... Thanks and hope you get it.

[Thelma]

My heart and prayers go out to you ConfusedMum26. I too suffer with Raynauds, but not until recent years. I agree with GrayGirl, please contact your local utility service; I'm very sure that you are eligible to receive support without hesitation. Things may look grim now, but continue to have faith and hope; I know all will be well soon. Blessings and victories are nearby and I trust that you and your daughter will be able to rejoice a little for conquering some of those current obstacles. GOD bless you.

[confusedmum26]

Thank you for all your replies. I've been in touch with my energy supplier but they said there is no tariff I can go on that will be cheaper. I'm on pre payment meter. They have accepted me for the warm home discount though. It's a help but only for about 2-3 weeks as I use so much gas. I'm feeling alot better now,I just have a mini breakdown every few weeks when it gets difficult. At the moment my daughter has other health problems that the doctors cannot figure out what itis. Her temperature spikes every 2-3 weeks upto 41°c,she gets a red rash with the temperature.it lasts 2-5 days then goes back down. I just want to know what is wrong and help her. Thanks to the raynauds association I have been given the option to have her referred to gosh if we don't get any answers soon. Fingers crossed.

Thank you all,it's nice to have people to talk to who understand how difficult raynauds can be x

[SRUKadmin Partner]

Sorry to hear about your daughter, no wonder you have a melt down every so often. Has she had a blood test recently to rule out any associated conditions?

[confusedmum26]

Yes she's had blood tests,a chest scan and a scan of the stomach,spleen and liver. We are now waiting to see another specialist ,that's in January and a heart scan in February to rule out a hole in the heart. I've googled so much and found a few things that could relate "hyper immoglobin syndrome, periodic temperature"so I'm going to make a list of them to ask the specialist if it's any of them and take the temperature charts I've been keeping. I've always got a thermometer in her ear love her.

If all else fails then I'm going to see about getting her referred to Great Ormond

[graygirl1 in reply to confusedmum26]

Hello confusedmum26. Try not to stress and overload with web information. The thing with Autoimmune Disorder is that a lot of the symptoms resemble other illnesses so it tends to take ages to come to a final conclusion and definite diagnosis. A good Rheumatologist will soon get to the root of your baby's problems and you will receive help and support. You will soon be able to manage. Everyone is different and find ways to cope with time and experience so don't dispair. Please take good care of yourself so you can continue to care for your lovely little daughter. I too sends you and family best wishes.

Graygirl1