Very OT: anyone have experiences with Raynaud's in a child? (white fingers)

[tink576]

I have it. My doctors say it's not a big deal but that it acts up when cold or stressed. I took pictures on my cell when I would have an episode so that I could show the doctor. I get it all the time in my toes, and then less in my finger and whole foot. I find it gets bad when I take tests (stress), and have actually asked teachers to wear gloves when it acts up during tests to be more comfortable. At first they I think they thought I was nuts until they looked at my white fingers. When it gets really bad for my feet I'll soak them in hot water, but even then it'll take up to 10 minutes to get the color back.

Don't stop living life because of it. Even though it hasn't stopped me from going sledding or skiing, I just stop every so often to try to warm up (probably a little more then most). Just take a couple more precautions to keep her warm and the circulation flowing. Get her some really nice warm gloves, get some of those reusable hand warmers...they sell them in the mall around holiday time the one I use has heatinasnap.com written on it... it's a gel that has some metal chip which you snap to make it warm for however long and hardens as it heats up....then after it's cold you boil it in a pot for 5 minutes and it returns to gel form ready until you decide to use it again. Also, if she get's it in her feet I would recommend some dance tights. Might sound weird, but as a dancer and dance teacher the reason for dance tights in the first place is to keep your muscles warm and at a consistent temperature to avoid injury. I found that it helpful when I'm doing cold stuff to help add warmth for my feet and legs without bulk (you'd want the thick dance kind that you would find at a dance/gymnastics shop not pantyhose). I wear them ice skating/sledding/skiing/shoveling/sibling's sports games or anytime I think I might get cold. You can't tell you're wearing them and it adds an extra layer to your feet in addition to your socks without affecting the fit of your shoe. I tired wearing 2 pairs of socks, it doesn't work

 

[moopdog]

Trying to remain calm and not jump the gun, but someone made a reference to "CREST" disease on here and I had never heard of it, so I googled it this morning (worst idea ever), and see that it's an acronym, and my daughter has 3 of the 5 letters, R- Raynaud's; E - Esophogeal (she's had severe GERD and espohagitis since birth), and T - telangiectasia. When I saw the T- Telangiectasia, I almost fell out of my chair! I've never even heard of anyone else having that except for my DD. She has a "spot" on her wrist/hand & a dermatologist said that's what it is. Nothing to worry about, can't harm her. I'm not saying it's rare, just that I've only heard the word twice - once from her doctor and again on the CREST website.

But what a weird coincidence that she has 3 of the 5 and guess what....I just made her the appt about 10 minutes ago. She's going to get checked out for once and for all! I want her to at least see a rheumatologist for a consult. After that, I will breath a sigh of relief. And in the meantime - I'm not "googling" anything else!!!

 

[thebeesknees]

I have had it since I was a child, my Mom and grandmother have it, too. Wool socks are my best friends in the cooler weather. I also stick with mittens instead of gloves, and use those hand warmers both in my mittens and my boots sometimes if I will be outside for an extended period of time. Warm water helps bring the circulation back, as well as doing "windmills" when I am in a place where I can't go indoors. I am cold all the time and have had blood work run for other related things, but it all came back negative, so I just wear a fleece jacket over my clothes indoors from about September to May, since no one else in my family feels the cold like I do. My husband says that my nose gets so cold that kissing me sometimes feels like snuggling up to the dog! Oh, and I have one of those heated mattress pads on the bed to help in the winter because even sleeping with socks on, I used to get very painful feet. That has definitely helped immensely. Sounds like you are on the right track with your daughter by getting her tested further. Good luck to you both!

 

[hoosiermama]

I am a nurse and a board certified lactation consultant. We see Raynaud's in injured nipples. Dr. jack Newman (well known worldwide in the breastfeeding community) recommends using Vitamin B6. Dose is 100-200 mg for first 4 days and then 25 mg from there on out. Pretty easy to take an OTC vitamin. Not sure if it would work for extremities but I have seen decent success in lactating women. He does go a step further and if B6 doesn't work, then he recommends Nifidepine (Rx). The Nifidepine wouldn't be for children though. I think the B6 is worth a try!

 

[Brer Shay]

My husband says that my nose gets so cold that kissing me sometimes feels like snuggling up to the dog!

I've gotten the same comment from my DH!

 

[bored]

I've developed it as a side effect of lyme disease over the past few years. About Oct - Apr I'm in gloves most of the time. The wife makes me run warm water over my hands before she will let me "into the bed"!!

 

[ekatiel]

I've had this since I was about 19. It's a great excuse as to why we can never move to Wisconsin to be near my in-laws . Hopefully, it's just a strange quirk that you daughter will learn to live with and nothing more serious .

 

[Marshay]

It's nice to hear from others who have this too! I've had it since I was a child (approx 8-10yo) and I'm 42 now.

Hand warmers do wonders...a good, no make that great insulated pair of gloves or mittens (I just prefer gloves personally) really help.

I've never been tested and it's not a problem with me, thankfully, except that it takes a bit to get hand color back to normal.

Best wishes everyone!