Raynaud's disease?

Hi,

DD has had trouble keeping her hands and feet warm since day dot. She was born in summer so I noticed it a little when in airconditioned places but thought lots of little babies had the same thing.

Last winter was her first and I noticed then that she often had blue hands and feet also, even with socks and booties on. I made sure she wore mittens whenever outside. This winter I have found her hands to be worse. Often blue or grey, they can be white also and if I massage them to encourage the bloodflow, they remain white for at least 5mins when normal skin would return to pink within a few moments. They also go bright red when they rewarm, like in a warm bath.

I rang the parent help line and all I got was "if she has always been like it then I guess it's just what she's like". Gee thanks, that was soooo not helpful!

She has had a couple of chiropractic treatments to help with the circulation and while they helped a little, it was not substantial enough to warrent and not long lasting. The chiro suggested I get her iron levels checked.

Today I had had enough of the constant, underlying worry that maybe something was really wrong. So many people comment on her hands making me feel as though I am not dressing her warmly enough! (as though there isnt enough to feel guilty enough about as a mother!) So, I took her off to the GP. He prodded, and asked a few questions. Her hands were icy cold and blueish despite sitting in the roasting hot waiting room for 40mins waiting for our appointment. Sometimes the blue colour goes all the way to her elbows! He phoned his favourite paediatrician and asked a few questions. His tone on the phone and towards me is another whole thread really but anyhow... his response was that DD has Raynoud's disease, primary. She will most likely outgrow it and unless it is causing sufficiant pain to stop her doing things then she doesnt need treatment of any kind.

Sorry for my rambling post, just wondering if anyone else has experience with this and if so how did it effect the child, when did they outgrow it, was there anything special you did to help it, do I need to see a paediatrician myself really for proper diagnosis???

Thanks in advance.

i would see the paed to put your own mind at rest - if the GP seemed disinterested, it's definitely worth getting her checked properly

FWIW - my mum has developed reynauds in adulthood - she wears gloves all the time when the temperature drops cos if she doesn't her hands go white and she loses sensation in them. no idea how to help with a bubba but wanted to let you know mum's experience and to send you big hugs - it's not easy dealing with anything that hurts our kidlets!

My girlfriend has/had quite severe Raynaud's. She grew up with it, and never grew out of it, at 28 she decided to have nerve surgery, it has made a big difference to her. Prior to that, she just lived with it. I think the treatment depends on the severity. She could have taken medication, but chose not to. I'm not sure of her reasons for that.

If you are unhappy with the information you got, i too would be asking for a referal to a paed. You need to have all your questions answered.

I honestly don't know a lot about it, it's not that common in kids and I've never nursed any children with it. I do know it is implicated in breastfeeding problems in women, though - the severe vasoconstriction that you see in her hands and feet that makes them turn white can occur in the nipples too, and be quite painful.

I would see the paediatrician for some more information.

I have it mainly in the right nipple and yes, it is very painful. The nipple turns white and then a purplish / deep red as the blood supply returns. It can be excruciating and caused the fissure in my nipple 3 months to heal due to the altered blood supply and continued feeding. I was on nifedipine for a few months (a blood pressure medication / calcium channel blocker) which helped immensely and have weaned off it again now. We continue to exclusively BF.

I find I need to keep the breast warm - multiple clothing layers, and the cold can be painful. I can't feed outside on the right side in the cooler weather because of the pain / discomfort.

IMO - I would get her evaluated by a paed for peace of mind. If she has no pain then generally there is nothing to do except try to keep the areas warm. If there is pain they should be able to refer you to someone who specialises in the management and offer some alternative treatment options.

Thanks so much for your responses everybody.

She doesnt seem to suffer any pain with it so that's great - she still uses her hands even when blue/grey but perhaps a little more stiffly. I usually make her wear her mittens when outside and she is always happy to have them put on so I think she appreciates them. (must buy more as they do need to be washed occasionally!!!)

I am taking her to have her 18months health check this week so I will ask for a referral from the health nurse then.

I will keep you posted....