my daughter was diagnosed with raynauds she is 3 but im worried...

[kirsty21]

she suffers very bad with her raynauds about a month ago she had a really bad attack and would not stop crying for about a hour and a half i tried everything ,, when i eventualy got her to calm down wrapping her in a dressing gown and lying with her in bed she went very very white even her lips changed colour , but she was sleepy but i could not wake her up even shouting her name this lasted for about a minute then she came to it realy worried me is this normal or not ?? she is on no medication to control her attacks either

[Anteater]

Hi KirstyI dont know where you are but ask your GP to refer you to a Rheumatologist and dont take NO for an answer - your daughter needs expert help xxx Good luck xx

The Royal Free in Hampstead London are excellent xxx

[zenabb]

Who diagnosed her? There must be a neurologist near you. She needs urgent treatment. There is no need for her to suffer like that (or you).

Best wishes.

[kirsty21]

it was just our local GP that diagnosed her after she was diagnosed they sent her for a heart ECO that came back fine that is all the follow up care she has had ,we are near manchester , thankz for ur comments will go back to GP and see if there anything else i can do AGAIN xxxxxxx thank you

[MelOhio]

My son was diagnosed at 1 1/2 had episodes of lips turning blue, fingers and feet swelling and pilling. Took took his pediatrician who then referred to a pediatric rheumatologist. He has had the echo of his heart done, ultrasounds of internal organs, but all came back fine. He is now going on 10, luckily we have only used a nitrobid creme( it is used to help open the blood vessels to allow for better circulation) on wrist and in between fingers and toes, But just layering clothes keeping torso covered and all extremities seems to help and keeping him as warm as possible in the cold months. I take him to the specialist every 3 months during fall and winter months and he gets testing on a yearly basis for any further autoimmune diseases, lupus runs in the family. We have been lucky so far, it is very scary when you first get a diagnosis of this especially with a child, its more common in adults. From my experience using precaution has been working we have been able to keep episodes to a minimum. i would definitely seek out a pediatric rheumatologist just to establish a care plan for the future.