I have a 3 year old granddaughter that has been diagnosed with Raynauds does anyone else out there have some one this young with it?

[GrannySue]

The local Pediatrician is planning a drugs trial with my granddaughter and I am worried so was wondering if there are other children out there with it and what treatments they are receiving.

[RSA_Hannah]

Hi there. Raynaud's does occur in children - you can find a bit more information the RSA website at raynauds.org.uk/raynauds/te...

If you are still worried, you can contact the RSA on 01270 872776

[AHM42]

The RSA knows of several young children with Raynaud's and can put parents in touch with each other through their newsletter. You should ask for your son to be referred to a paediatric rheumatologist if possible.

[AHM42]

Sorry your grandaughter!

[GrannySue in reply to AHM42]

Thanks for the advice I will get my Daughter to contact and get networked.......... the drug they have put my granddaughter on Naphedapine if anyone else has received this treatment I would be interested to know how effective it is?

[OXMOAD]

My 11 year old grandson, now son, who had open heart surgery when he was 3, and long family history of auto-immune with Raynaud's is showing the symptoms now. We have an appointment set up for him in a couple weeks with a pediatric rheumatologist.

God bless you. Keep looking for answers.

[GrannySue in reply to OXMOAD]

My thoughts are with all of you suffering from this I didnt know it existed until my granddaughter started with it - I am in the UK so looking for a pediatric rheumatologist now so thank you!

[Biancasmom]

My 6 year old has raynauds. She was diagnosed at 3 years old. She also has systemic scleroderma. Being treated at CHOP in PA

[Biancasmom]

Biancais on methotrexate, plaqunil,baby aspirin. And nitropaste in webs of fingers for her raynauds. Take your grandchild to rheumatolgist, I wouldn't let pediatrician treat 3 year old for raynauds.

[GrannySue in reply to Biancasmom]

thanks Biancas Mom I am currently looking for a Pediatric Rheumatologist in the UK thanks for the advice

[lizzy]

i think my 2 yr old grandaughter has it,, her hands are always cold and purple,, i have R&S but her hands can feel colder than mine at times, but she doesn't go white like me,, and also i know i little girl who i think is about 6/7 and she has it and her hands are really cold too,, i really feel for these youngsters is not nice for adukts never mind them

[GrannySue in reply to lizzy]

Hi Lizzy - Ellie was diagnosed but I don't think her hands go white either - what finally clinched the diagnosis for us was when we went to Cardiff to a Science center for Children and there was a thermal imaging camera Ellie when pictured by it had no heat in her arms to her hands below the elbow - It was quite a shock

the medication is working well Thank Goodness

[Lynnie]

As far as i can remember, i was born with Reynauds, i had mottled legs and arms from birth. The symptoms appeared early, with hyperhydrosis, are the 2 linked, does anybody know?..

[GrannySue in reply to Lynnie]

We now think Ellie might have had it from birth - it's horrible!

[Lynnie]

If it`s just Reynauds, it`s not so bad. I only have Reynauds, and during the years between 20, and 30, it was quite difficult, but after 2 surgeries, to sever the sympathetic nerves, it has become so simplified. The only side effect is severely dry skin, which is manageable. Im not sure if this surgery is available here, in the UK, though.

[confusedmum26]

My daughter has had it from birth,she's 22 months now and for the past 6 months she has been on nifedipine which has made abit of an improvement.

[kimbalina]

I have had raynauds since I was about 3 or 4 yrs old. It never really caused me severe problems except I remember coming down stairs backwards due to the pain in my feet when cold.

At that age ( I am now 59) you didn't go to the Dr unless it was life threatening lol! No tests and you just got on with it and kept warm. Although no central heating which didn't help.

Later in life my GP told me it would not cause any problems as long as I always kept feet and hands warm.

It is only since I have been diagnosed with scleroderma in 2012 that I have suffered with ulcerated fingers etc.

Wish you and your granddaughter well.

Kim