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Old 10-20-2012, 09:20 PM   #1
moopdog
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Very OT: anyone have experiences with Raynaud's in a child? (white fingers)

Because it's "kind of" in my field of work, I am familiar with Raynaud's enough to recognize and describe it. But I've never seen it in a kid, professionally. I don't see it much at all, actually.

Low and behold my 9 year old has been diagnosed with it. In a nutshell, her fingers turn completely white for up to 45 minutes before the color and feeling suddenly comes back. This happens when she gets too cold. It's been going on for about 6 or 7 months now, but with the cold fall season it's happening more often, of course.

The dr was pretty nonchalant about it, no testing, no real info at all. In fact, she said she would have to educate herself a little more about it. But in the meantime, we can't go to football games, swim in cold water, etc. I'm just wondering if anyone else has a child with this?
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Old 10-20-2012, 09:25 PM   #2
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I would post this on the "disney for families" board. You would probably get more people to answer you there.
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Old 10-20-2012, 09:48 PM   #3
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I have it, but just developed it and it hurts like hell! I would get a second opinion though. It can be a first symptom of scleroderma, which is scary.

Good luck!
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Old 10-20-2012, 09:48 PM   #4
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Not in a kid but in me. Even today, in the low to mid 60 degree weather we had in south central PA, my right big toe and 2 of my fingers were white and numb at my son's baseball game. I've mentioned it to the doctor a few times and he just says to "keep an eye on it". I usually make sure I have an extra pair of gloves or socks with me...today I didn't think it would be an issue.
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Old 10-20-2012, 09:54 PM   #5
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Quote:
Originally Posted by massagemama
Not in a kid but in me. Even today, in the low to mid 60 degree weather we had in south central PA, my right big toe and 2 of my fingers were white and numb at my son's baseball game. I've mentioned it to the doctor a few times and he just says to "keep an eye on it". I usually make sure I have an extra pair of gloves or socks with me...today I didn't think it would be an issue.
Well, that's what prompted my question. We had to leave my sons football game ( lucky my DH & I drive separate), because we just couldn't get her one finger to warm up no matter what we tried. It was cold, but she did have gloves. Just wasn't enough I guess.
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Old 10-20-2012, 10:00 PM   #6
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I was diagnosed with Raynaud's at about the same age. I actually outgrew it. My doctor acted like it was no big deal as well. I do remember it being very painful. Good luck and I hope your daughter outgrows it too.
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Old 10-20-2012, 10:02 PM   #7
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I've had it my whole life (I'm 37). It is important for me to stay warm in the cold weather. Plus my hands are always cold!!!

I can go sledding and skiing and spend time outside in the winter, as long as I have really good quality socks, boots, mittens/gloves.

My hands actually turn more blue/purple and are like that most of the time. Even just going to the grocery store and opening the frozen food section or getting food from the refrigerators will start to trigger it.

I had all sorts of tests done when I was younger.

*I think it is important for the whole body to be warm, not just the hands/feet.
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Old 10-20-2012, 10:20 PM   #8
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My daughter has this. She is 16 and got it about 2 years ago. She is always cold. Her toes will get numb at school and turn purple and her hands are always freezing.
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Old 10-21-2012, 01:10 AM   #9
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I first started having signs of it when I was 19, about 10 years ago. Referred to a rheumatologist and had some blood tests. I have a +ANA (anti-nuclear antibodies, which I think is typical of those with Reynauds), which can be related or precursor to autoimmune diseases like scleroderma or lupus. Rheumatologist scared me by saying he thought the tests indicated that I had scleroderma, but a second test was negative for the disorder. He recommended annual testing to monitor it.

I live in Arizona, so not a big deal. It does, however, flare up anytime it gets below 70 or so, inside or out. Have to ensure I bundle up my extremities when out in the cold. My hands are the most affected - white/red/blue, pain, numbness, stiffness and swelling.

When I was pregnant with my first child a couple years ago, they completed testing to make sure nothing had changed and that I wasn't at risk of complications from something like lupus.
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Old 10-21-2012, 07:23 AM   #10
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I don't have this but when I was younger I had a hard time keeping my hands and feet warm. I would carry a hand warmer like my father took hunting and always wear a hoodie with a pocket in the front and always kept my hands in the pocket with the hand warmer.
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Old 10-21-2012, 08:11 AM   #11
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Sounds like that what I need to push for, she should probably just have some simple blood work if nothing else. But a rheumatologist is probably not a bad idea to get some answers. I'm calling this week to get the ball rolling. We live in an area that is very cold for 5 months out of the year, so we need to figure this out. Weird thing is that I'm 38 and this happened to 2 of my fingers for the first time ever about a year ago, but for me it only happens when I'm gripping a cold steering wheel and the temp is below freezing outside. It happens to my daughter when her body is cold and it could just be a little bit chilly out. Also it happens to her entire finger (or fingers) and to a few of her toes. Mine was just 3 occurences and it happend to a section of my fingers, from the second knuckle to the tip.

I just think it's uncanny that it happens to me at 38 and my 9 year old in the same exact year. Just coincidence, but still very weird!
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Old 10-21-2012, 08:11 AM   #12
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I have it also and have found a few tricks to be able to continue attending football games, going hiking, shoveling snow, etc.. Merino wool socks with compression sections are helpful, always carry extra thinsulate gloves in the glovebox of the car, wear layers in general. My "go to" items for outdoor events are the iron oxide packs that generate heat when exposed to air. For a football game, I'll put one in each coat pocket and use the specific toe warmer packs that adhere to the inside of your shoe. The most reasonable place I find them is with hunting supplies, either brick and mortar stores or online. There are several packs of these in my car as well.

As PP mentioned, it's important that the body core stay warm because when the core is cold, that's when the shutdown message to circulation in the hands and/or feet goes out. Layers are helpful and a hat is also pretty important. Since she's nine, it's convenient hats are "in" right now. Good luck as you work through this with her.
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Old 10-21-2012, 08:17 AM   #13
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My MIL was diagnosed about 25 years ago. She also has Cress. Anyway, getting her to understand dressing in layers, wearing rubber gloves when she does dishes and keeping her hands covered have been difficult. She is always cold. We keep our house at 69 in the winter and 73 in the summer and she complains how cold she is while I walk around in shorts and barefoot. One of the things she developed was low pressure glaucoma (due to her circulation issues) and her vision is really bad now, but she's 80 and it;s only been the last 3-4 years that it's been a problem. I would follow up with a rheumatologist and not just take your GP's word.
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Old 10-21-2012, 08:24 AM   #14
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I also agree with OPs about getting further medical opinions. Since Raynaud's is in the autoimmune class of diseases, it would make sense to get a full blood workup for autoimmune diseases. I know getting a blood sample from a child isn't easy, but they can assess a tremendous amount from it. It may well be nothing more, but it's worth checking out.
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Old 10-21-2012, 12:11 PM   #15
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I have it and have had it for about 10 years. It's more with my fingers than my toes. Gloves don't really do anything to help me. My fingers go completely white and become very painful. If I'm at home or work I run my hands under hot water, that's really the only thing that helps. I also have a small floor heater at work to keep me warm.

If I'm outside at a sporting event or DL, I have hand warmers or I put my hands in my armpits until they come back, then put my gloves on. When I go running every morning, I run with gloves and with them in my arm pits. I look completely ridiculous.

You guys have inspired me to contact my Dr to see what they say.
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