Raynaud's...?

[hopeforthebestplanfortheworst]

Hi.
My child (6) has some foot problems, Raynaud's suspected. Cold toes / fingers, but one toe in particular gets especially discoloured red / purple & is painful for her in any pair of shoes bar 1 pair of fabric pumps which she is sick of wearing.
This is all new to me, her father had some circulatory issues but wasn't formally diagnosed with anything. He is absent so no further info there.
Just wondered if anyone else's child has this, I've looked online (I know they say don't but....) & it seems to be rare in children? Really worried at mo about the primary / secondary aspect & the future for her. She has a serious food allergy diagnosed already, it's so unfair she'd have more to 'manage' (I know it doesn't work like that but still).
Any advice / experience appreciated. How does diagnosis work, should I push for a specialist rather than the general surgeon she's waiting to see, what it's like living with the condition. TIA.

Anyone? No one?!

Hi. I don't know what it's like to have it as a child, but I was diagnosed with it ten years ago, aged 25. Can't remember if I'd been referred to a dermatologist or to some expert in circulation issues. I was prescribed a special cream and after a number of weeks it got much better. For a long time now (many years), I've been pretty much symptom free and haven't had any pain at all. I hope this helps

Hi there, i was told when my daughter was 18mths old that she had Raynaud's. She has underlying issues & one of the two doctors advised me to seek a second opinion, as it is rare in children in its primary form. However, it isn't completely unheard of. 5 years later my daughter does still suffer with 'poor circulation' & there are days when her fingers have a purple appearance. Have you thought about getting in touch with Raynauds UK? www.raynauds.org.uk/raynauds/teenagers-a-youngsters If she is awaiting a refferal to a surgeon, I assume that isn't down to the raynaud's alone? There are specialist centres, I would speak to your GP/ or consultant about being reffered to a specialist for some peace of mind at least. Good luck!

There is treatment available in some cases, so yes even if she see's a rheumatologist, they will test for anything underlying and consider whether to treat the symptoms or not. Winter months are not great for my daughter, nor are swimming pools and baths. We manage it using gloves, keeping her well wrapped up in winter & keeping temperatures in baths/showers nice & even x

I've had Raynaud's my whole life (Primary Raynaud's) but severity has fluctuated.

As a child it wasn't too problematic, though I'd get loads of painful chilblains. I went on medication at some point (possibly around puberty) but it didn't make much difference.

It might be worth chatting options with the GP but I think the most you can do is try to minimise the effects. So always wearing gloves and warm socks, trying to avoid large temperature fluctuations, warming up slowly when she has been cold.

Primary/Secondary is just about whether it's present on its own or as part of another condition. I can't remember which other conditions it can be present with, but the Raynaud's and Scleroderma association has good info (as well as advice on living with it).

Hope that helps, but let me know if you have more questions. I should be able to remember more of what it was like a a child.

Excuse the automatic 'x' on the end of that.

One of my friend's dd has it.

She wears lots of ugg boot type shoes, soft ans warm, and furry mittens. Never bare feet at home always socks and slippers, that sort of things to keep warm.

Dh has very poor circulation in his feet and wears mostly thermal socks and slippers at home.

Definitely agree re no bare feet (except on the hottest days). I find if my feet are warm then the rest of me feels warm too. Hands are always cold, though.

I've also had it my whole life. It's got worse recently but I'm not convinced that the medication on offer would make much of a difference. It has always just been a case of managing it - as PPs say, gloves, slippers etc. Running fingers under a warm tap helps, but my feet never seem to be warm which drives DH mad is irritating.

My dd has primary reynauds.
We had a rheumatology check,and were suggested vitamin e,vitamin c and ginko biloba so you could ask if you could do that (but please do check)
The main thing is not to let them get too cold in the first instance.

Oh,my dd was diagnosed at about 6.

I thought no one had it in the family,but interestingly when I was pregnant with her I got excrutiating nipple pain when cold -and I think this has something to do with reynauds!

ThatBloodyWoman Vasospasm in the nipples can be associated with Raynaud's or or not. I do wonder if there's more of a tendency when Raynaud's is in the family.

Thanks all. Really appreciate the replies & sharing of your Raynaud's info.
We have a specialist centre about 20 ml away so I will ask the local hospital to refer her straight there or the gp to re-refer her to it. They've said its up to 18 wk wait for an appt so don't want to waste time seeing the GS consultant at local Hosp.

Bookwormish: it's really interesting what you mentioned about swimming. DD has had wkly swim lessons for past 2 yes but a month ago I took her out pending a revisit to her allergy consultant. She'd started showing difficulty breathing in the water, occasional face rash, complaints of 'tummy pain' & it was after her lessons I first noticed the shocking discolouration in her toe. I wondered if it was somehow allergy related but now maybe this? It's only been the last 6 months or so she's gone in the big (cold) pool & from the viewing area it was clear sometimes she'd be physically shivering / shaking. I'd put her in a body UV swim suit thing to help but now I feel rotten it looks like she must've been suffering due to poor circulation

I have wondered if it could be related to allergies as it's to do with autoimmune overreacting like allergy histamines overreacting.

I worry like mad & as a LP don't really have anyone to talk to about this stuff. I'll follow up with the specialist centre referral on Tues & keep her snug in the meantime. Her hands get cold but she doesn't mention them, its the feet giving problems & only being comfortable in a single pair of shoes is difficult plus I worry when she grows what if I can't get an equivalent pair!

Thanks again all so much.