Thursday, February 05, 2009

This bubble better have a heater in it

So, you know how I always talk about our kids being screwed with genetics? That Logan is sensitive to everything and could be bubble boy? And how I thought Carter might have escaped some kind of funky, rare, allergy, reaction or disorder? Yeah, I was wrong. He's now just as much of a bubble boy as Logan is. Poor kids.

Over the last few days Carter's feet have been extraordinarily cold and discolored. Like bluish-purple your-feet-are-going-to-fall-off kind of discolored and as cold as little ice cubes. At first I told myself to calm down, that he was probably just cold since babies have poor circulation anyway. Right? So, I keep him warmer, giving him a warmer blanket at night, keeping him in footie sleepers with socks underneath so there was no way his skin could be exposed & his socks never had a chance to come off. Yesterday he woke up from his afternoon nap and his feet were the color of plums. They were getting worse, not better. I called our pediatrician to get him seen that afternoon. We were scheduled ASAP, as in get there in 10 minutes.

We get there and of course his feet return to somewhat normal. They are cool, but now a normal pinkish red color. After talking to our Doctor about it, she cocked her head to the side and surprisingly said, "He has Raynaud's", as if I was supposed to know what that was. She explained what it was and said that it was no big deal. I just have to keep him warmer than other kids, socks always on, warmers in his gloves when he's old enough to play in the snow, put a heated rice sock in his blanket sleeper and crank up the space heater in his room. Relieved that he didn't have a heart issue (he was eating well, his cheeks were flushed, sleeping fine and everything else was normal), I walked out of the office like this whole thing wasn't too abnormal even if she said she saw about one kid a year with it.

Then I got on the internet to learn more about it.

OH. MY. GOD. He has a rare disorder that effects about 3% of the population. So, basically he's more sensitive to colder temperatures and emotional stress than most people. One general description equated it to someone being allergic to the cold. Carter is allergic to being COLD AND STRESSED!! The blood vessels narrow and restrict the blood flow to the tissue, which in severe cases causes tissue death. Sometimes this can make the hands and feet (his feet are worse than his hands) numb and tingle and sometimes painful. We won't even go into all that can happen with the severe form of this disease. It's not good. Most people who deal with this feel that it is just a nuisance and have to make lifestyle changes to manage it for the rest of their life. One of which is moving to a warmer climate as most attacks happen in temperatures of 60 degrees or less. We live in Colorado where the daytime temperature has dipped to -4 on some winter days. Here's a list of all of the other self-help measures he should take:

  • Take action during an attack. You can decrease both its length and severity by a few simple actions. The first and most important one is avoid the cold. Warming the body and the hands or feet is also helpful. If you’re outside and the weather is cold, go indoors. Run warm water over your fingers or toes or soak them in a bowl of warm water to warm them. If a stressful situation triggers the attack, get out of the stressful situation, if possible, and relax. While biofeedback and similar nondrug methods are used, formal studies have suggested they are not helpful.
  • Keep warm. It is important not only to keep the extremities warm but also to avoid chilling any part of the body. Remember, a drop in the body’s core temperature triggers the attack. Shifting temperature (for example, rapidly moving from 90 degrees outside to a 70 degree air-conditioned room) and damp rainy weather are to be avoided. In cold weather, pay particular attention to dressing. Several layers of loose clothing, socks, hats, and gloves or mittens are recommended. A hat is important because a great deal of body heat is lost through the scalp. Keep feet warm and dry. Some people find it helpful to wear mittens and socks to bed during the winter. Chemical warmers, such as small heating pouches that can be placed in pockets, mittens, boots, or shoes, can give added protection during long periods outdoors.

    People who have secondary Raynaud’s phenomenon should talk to their doctors before exercising outdoors in cold weather.

    In warm weather, be aware that air conditioning also can trigger attacks. Setting the thermostat for a higher temperature or wearing a sweater indoors can help prevent an attack. Some people find it helpful to use insulated drinking glasses and to put on gloves before handling frozen or refrigerated foods.

  • Do not smoke. The nicotine in cigarettes causes the skin temperature to drop, which may lead to an attack.
  • Avoid aggravating medications such as vasconstrictors, which cause the blood vessels to narrow. Vasoconstrictors include beta-blockers, many cold preparations, caffeine, narcotics, some migraine headache medications, some chemotherapeutic drugs, and clonidine, a blood pressure medication. Some studies also associate the use of estrogen with Raynaud’s phenomenon.
  • Control stress. Because stress and emotional upsets may trigger an attack, particularly for people who have primary Raynaud’s phenomenon, learning to recognize and avoid stressful situations may help control the number of attacks. Many people have found that relaxation can help decrease the number and severity of attacks. Local hospitals and other community organizations, such as schools, often offer programs in stress management.
  • Exercise regularly. Many doctors encourage patients who have Raynaud’s phenomenon—particularly the primary form—to exercise regularly. Most people find that exercise promotes overall well-being, increases energy level, helps control weight, and promotes cardiovascular fitness and restful sleep. Patients with Raynaud’s phenomenon should talk to their doctors before starting an exercise program.
  • See a doctor. People with Raynaud’s phenomenon should see their doctors if they are worried or frightened about attacks or if they have questions about caring for themselves. They should always see their doctors if episodes occur only on one side of the body (one hand or one foot) and any time one results in sores or ulcers on the fingers or toes.

I'm a little perturbed that our pediatrician was so lax about the whole deal and neglected to educate me to the fullest. Thankfully we live in the age of information where it's readily available and I'm the type of person who will look for the details. And believe me - I've been reading everything about it every day since his diagnosis. With Logan's allergies and reactions, we are downright pro's at making lifestyle changes for our kids, so making sure that Carter stays extra warm (which instinctively feels just wrong - like he's going to overheat) won't be that difficult.

I've tried to find pictures online of what it looks like, but haven't found anything that looks like Carter's feet. I carried the camera with me at every moment and got some good pictures of a mild attack. Mind you, this is not the worst - they've been much more discolored than this:

9 comments:

Anonymous said...

Is this a genetic anomaly? I do not know of anyone on your paternal side that has it.

Kari said...

HI,
I have Rays too...It's not as horrible as the net made it sound. I live in a lot colder climate (it was -50C with the wind last week!)and for me, in winter/spring/fall, I have to wear mitts whenever I'm outdoors (gloves don't cut it). If I forget, I remember within seconds as my hands get very sore! I can't wash veggies etc in very cold water..
I would say that the extreme cases of Ray's occurs in 3% of the population, but the milder forms occurs much more frequently.
He will likely live in Robeez! You might want to look into getting him a pair of stonz for next winter (they can be worn overtop of Robeez)
He may grow out of it as well...

Kristin said...

They aren't sure what causes it, but they think it may be genetic. It typically develops in women between the ages of 15-25 who live in colder climates.

We don't know anyone on either side that has this or anything remotely close to it.

Kristin said...

Kari-

Thank you SO MUCH for those suggestions!! I'm also relieved to hear from someone who actually has it, since the info I found did sound pretty scary.

Logan went in for his check-up yesterday (hope to finish that post today) & the Dr. got to see Carter's feet in a more severe attack than the day before & he had been wearing his socks under his footies & had been sleeping in the car seat that has a bundle-me cover. She was surprised to see how blue/purple his feet were & said that she was going to consult some of her colleagues & get back to me.

Joanna said...

Poor baby! I have never heard of such. Of course, one probably wouldn't unless they too had it or know of someone who does.

Stay warm! And I suppose you can always move to the south...At least you won't have to deal with family.

Kayce said...

Kristin, I have it too, although I've never been diagnosed with it. The first few attacks I had as a child, we thought it was frostbite (on vacation in Colorado), but when they continued at home in south Texas in 60-degree weather, we started to wonder. I am fortunate enough to live in a warmer climate, but I still have problems with it especially in my toes when I wear open-toed shoes in buildings with the air conditioner on too high. I've learned to wear socks any time my feet start to get cold, even during the summer, and never go out in winter without gloves on. If an attack starts to hit, I immediately work on warming the fingers or toes, and they usually don't stay numb very long. I'd never heard of anyone else with this problem either, so it's good to know it's not quite as uncommon as I'd thought.

Anonymous said...

You might want to ask Carter's doc to check him for SCL-70 and anticentromere B antibodies. Scleroderma is rare in infants, but has been known to occur, and it DOES cause Raynauds as one of the first signs.

UC/CPST Mom said...

Wow, am I glad to find your post! I've been reading up on this, and like you I've found that it normally affects adults and teens. My baby is 5.5 months old and her feet are routinely purple. Today at the park with her older sister her hands were also purple and musky colored. She seemed happy enough, but I wonder what it feels like for her. I mean, babies can grow five inches in a few months and not complain, so who's to know, right?

Here is a picture I took this week of my baby's foot. It's nearly just like your son's. I'm going to be bringing up Raynaud's with her ped at her six month appointment.

http://photos-f.ak.fbcdn.net/hphotos-ak-ash1/hs494.ash1/27010_1346994709496_1070139791_1053237_260679_n.jpg

Robeez do nothing for her feet. They come off and her feet are purple. Same with socks on. I'll look into the stonz, as someone here recommended. I'm also thinking of keeping some hiking hand warmers in my bag so that way we can use them when her hands get too cold outdoors (I can't imagine covering up a baby's hands too much, they need them!). We're in the Northwest, where it's chilly, but not cold cold, and her hands and feet still turn horrible colors. Our house is 70 degrees, and her feet were still that color.

I think my older daughter may have a very very mild case of this as well, based on something I read that talked of splotchiness on the skin in the cold. Her pediatrician years ago mentioned how she looked once at an appointment. It doesn't bother her in the least, so it's unimportant, but I think it is interesting from a genetic standpoint. I don't know of anyone in my family who has it. Nor my husband's. Though women in my family tend to have cold hands and feet, we're not bothered by them.

Anyway, I just wanted to say thank you for posting this!

Wendy

Wendy Thomas said...

Wow, am I glad to find your post! I've been reading up on this, and like you I've found that it normally affects adults and teens. My baby is 5.5 months old and her feet are routinely purple. Today at the park with her older sister her hands were also purple and musky colored. She seemed happy enough, but I wonder what it feels like for her. I mean, babies can grow five inches in a few months and not complain, so who's to know, right?

Here is a picture I took this week of my baby's foot. It's nearly just like your son's. I'm going to be bringing up Raynaud's with her ped at her six month appointment.

http://photos-f.ak.fbcdn.net/hphotos-ak-ash1/hs494.ash1/27010_1346994709496_1070139791_1053237_260679_n.jpg

Robeez do nothing for her feet. They come off and her feet are purple. Same with socks on. I'll look into the stonz, as someone here recommended. I'm also thinking of keeping some hiking hand warmers in my bag so that way we can use them when her hands get too cold outdoors (I can't imagine covering up a baby's hands too much, they need them!). We're in the Northwest, where it's chilly, but not cold cold, and her hands and feet still turn horrible colors. Our house is 70 degrees, and her feet were still that color.