These Forums have been Archived.

I have six children - two are from a previous marriage. So I am able to compare what is normal and not normal at different age levels. My husband was diagnosed with Raynaud's a year ago and for years before that he just thought he was sensitive to the cold. My daughter Hannah - now 8 - had an episode; a few years before my husband was diagnosed, where her hands and feet were extremely red and blue during the winter. It got so bad that her skin starting peeling and her blood vessels started bleeding. The doctors didn't know exactly what it was but when we kept her from the cold it stopped. My now 5 year old Jessica when she was younger went through something similar but we knew from Hannah how to prevent it. Jessica never got bad but we did everything we could based on our experience with Hannah to prevent it. (we were not aware of Raynaud's at this time) They never diagnosed the kids with Raynaud's but just something unknown.

We now have another child Sara age 6 months. Already we are noticing that her hands and feet are always cold and red and even her ears and nose become red. It's winter and I know it is usual for children to be cold however her hands and feet are always really cold (like ice) when she is even in the house. We have put socks on her hands and feet and though it helps a little they still are cold. I know that babies are not usually diagnosed with Raynaud's because most babies don't have developed circulatory systems yet......however from the now given knowledge that it is hereditary and that at least three out of four of our children have shown signs of Raynaud's; is it best to treat her as though she does to prevent it from worsening? Our doctors will only tell us that it's normal for babies to have cold hands and feet. Hers turns red and she even has her ears and nose turning red - and her condition extremely worsens when subjected to the cold. The only thing that helps is the advice we read from a pamphlet available online involving children with Raynaud's.

Last night we heated our bed up with an electric blanket on low and had her lay in bed with us and the blanket. It was amazing - her hands were like ours and not one hint of coldness from any of her extremities. I know that sounds sily (anyone who lays under a warm blanket can benefit). However, we laid her back in her crib and this morning her hands and feet were feeling like ice again. Again we laid her in our bed (not directly under the heating blanket) and it got better. Even before it was winter time her hands and feet were always really cold. We thought that it would go away - but when my husband brought her home one day from shopping and her hands looked blue - then I knew that there has to be something going on.

We don't take her out in the cold anymore. My husband and I take turns going out and going to church. We don't mind it as long as we know that she is well and comfortable. We know that with her being so small she can't express how she feels and when she cries for unexplainable reasons we wonder if it is related some how.

Please share your thoughts with us on this. Do you think we are over-reacting because of our knowledge on this condition or is it really possible that a baby can have Raynaud's passed down from her dad and the doctor's aren't recognizing it?

-------------------------
Andrea

Hello Andrea, and welcome to the forum. Thank you for introducing yourself and your family to us.

The genetic connections of Raynaud's and related illness are under investigation and are far from clear at this point. In any case, I don't think you're overreacting to the symptoms you are witnessing in your baby and your other children. Several other parents of young children with symptoms have posted in the forum over the years; I hope one or more of them will respond to your post. In the meantime, you might find the following article helpful; it appeared in our Spring 2003 newsletter:

http://www.raynauds.org/suppor...r/pdf/2003_spring.pdf

If the doctor(s) who are treating your baby and your other children cannot give you satisfactory answers, perhaps you can seek out a pediatric rheumatologist.

-------------------------
Judith
Secondary Raynaud's with underlying systemic sclerosis

My Daughter is 11 months. she was born feb 2009, and her hands and feet are ALWAYS ice cold unless she is being held. We have resorted to putting her in a SNOWSUIT(complete with mitten covers) if we put her to sleep outside of OUR bed (co-sleeping). During the summer we went swimming in an unheated pool, and she was fine but AFTER we came out, I took off her bathing suit and swim diaper and put her in a dry diaper and wrapped her loosely in a towel, In the time it took me to then change out of my swimsuit, her entire body head to toe was blue even her face and chest, she was breathing fine, I put her inside my shirt and held her against my skin and covered her with blankets and put a hat on her and she quickly regained color. This was the only time she has ever turned blue. The Pediatrician sent me to a pediatric Cardiologist, and they did an Ecko and said her heart is fine, so it isnt that. My sister in law is a nurse and she had mentioned raynauds, but the doc says they dont diagnose that for babies, and the stuff on the internet is about blue fingers and toes, and hers arent, just ICE COLD. We dont have any history of it in the family. The pediatrician recommended keeping the house warmer, we keep it between 70-72 but the house isnt well insulated, so it may be colder than the thermostat says...
any ideas would be apreciated, because I am nearly at the oint of putting her in a snowsuit to play INDOORS, because when Im not holding her (ie crawling, in the exersaucer, etc...)her hands and feet are so cold....

Hi there. I'm glad to have found this forum and this thread! My baby is six months old on Tuesday and Raynaud's has been suggested by many people who we've met who have seen her feet. We keep our house warm (because I can't stand the cold) and in 70-72 degrees her feet are purple.

I noticed the other day when we were outside for the while (we're in the Northwest) that her cheeks had gone purple as well. I couldn't tell if it was a bruise or if it was from the cold, but when we came inside and she warmed up there were no marks on her face.

I've taken the temperature of her feet when they're purple, and her temperature (using a temporal thermometer) is usually in the mid to upper 70s. Her feet are just ICE. Sometimes her hands get that way as well, they'll go musky in color, kind of grayish-purple. So I've started making sure she has socks and shoes (Robeez) on when we go out, and I have mittens in the car, but her hands and feet are still cold and purple when we come in.

She's got her six month check up next Monday. I'm going to mention to the pediatrician my concerns. I'll also print out the Cold Cuts article to bring in with me.

I'm glad to have found this thread! I have no idea what she's feeling or what I should do about this. Having read up on this I feel my older daughter has a much more mild case of it, but it doesn't bother her. She just goes splotchy in the cold, so we can tell across the room if she's cold or not. But she doesn't hurt or go numb. Or go purple. Just splotchy.

Wendy

Edited: 11/14/2010 at 12:42 PM by Raynaud's Association Moderator

Most docs do not think babies can have Raynauds. For starters their immune systems are not strong enough. The only thing I can think of is that if mom had Raynauds and something happened during pregnancy. However my Dad who is an MD says that is not possible. He also insists babies are always cold and they often show raynauds type symptoms. Mind you I always remind myself its been years since he did any pediatric work.

Hello! My mother has Raynaud's, I also do, and so does my daughter who is now 4 years old. I knew from birth because she would have episodes of blotchy/blue ince cold hands and feet. Everyone comments on how cold her hands are. Her first pediatrician said they don't diagnose early but to keep an eye on her because it does run in families. I just try to keep her hands and feet warm as possible. She wore mittens all the time when she was an infant but now that she is a "big girl" she won't wear them. We live in Florida so most of the time it's ok, but there is an occassional freeze. She tells me that her cold hands don't bother her or hurt so I think she is used to it. I developed mine in high school so I wasn't used to it all the time.
I would definetly keep a close eye on your kids to make sure they don't develop ulcers and keep asking the questions to the doctors. Good luck.
Chrissy

hello...i am new here as well. i have a 17 month old who has exhibited symptoms of this disorder since she was about 1 month old. it has been extreme at times, and she displays the symptoms at least to a small degree almost daily. we live in a cold climate and our house is usually somewhat cold in winter, so that contributes, and i keep her bundled up. i have read that raynauds can be related to thyroid disease, and as this runs in my family, i am thinking of having her tested. one question i have is why would a baby's immune system have to do with having raynauds or not? my daughter has only had one illness and is not vaccinated and is still breastfeeding, so i assume at 17 months she has a healthy immune system. i am curious isf others with babies that show symptoms of raynauds are taking them for testing for thyroid or other conditions. what advice does anyone else have about steps to take if they suspect their baby has raynauds...other than trying to keep them warm.
thanks.

jennifer

I'm not in the medical profession but as a mom I think parents know best. You know your family history and GP doctors do not know that much about raynauds unless you go to a specialist. Have you tried a small room heater in your baby's room?

Hi Andrea,
Our son Ben was born with Raynauds/ Erythromelalgia and his full diagnosis was when he was 2 years old by DR Micheal J Dillon of GT Ormond st Hospital.
We asked his specialist if we moved to a warmer climate would it help our son and he said it would.
We applied to emigrate to Queensland Australia and moved over here back in Feb 1998 we landed at Brisbane Airport and Ben stepped off the plain and it was amazing, Ben has lived free from pain for 13 years now and it was the best move we ever made. I hope this post helps anyone with this condition.
Kind Regards.

Hey i'm Lauren and I've have raynauds since i was born. I was born with a low oxygen suppy and my whole body was actually a shade of purple. Since then my toes and fingers have been the same. Besides my hands always being cold and changing from dark purple to red they've recently started to effect me. I'm 20 years old now and anytime i go outside they hurt like pins and needles and i don't mean like when your foot falls asleep. It actually hurts and it's only the beging of fall. Last year my toes showed some signs too. After skiing i would always have to massage my toes to get the blood circulating. They would be so numb i couldn't even move them. Also my hands have been clammy as long as i can remember. I'm checking into various medications but for anyone who this this syndrome can exist in babies, i am living proof. I did read that infants that have raynauds usually have some other problems that will develope later in life. This really concerns me because these problems are serious skin conditions. I was hoping someone could tell me if this is actually true?

Hi my daughter is 8mos now we have seen a few doctors now and we have a Cardiologist appt and a rheumatologist appointment she has had a bunch of blood test being ran on her now were just waiting on the results... Every doctor and specialist we have talked to keeps mentioning raynauds. We have been dealing with this since she was born at first we figured it was normal since babies tend to do that. But her hands, feet and Lips turn a dark purple color and it's ice cold her hands and feet also seem to swell and if you touch her hands or feet it leaves a white mark and very very slowly turns back. I even started putting onies and socks under fleece sleepers but she still turns purple color and you can feel the coldness through the layers. Every person including doctors keep telling us it's very rare for a baby to be diagnosed with it but they are almost positive it's Raynauds. She was admitted for a over night observation and she didn't of course have a episode. It varies on the days, times and lengths it last. It's very spontaneous. I did however take videos and pictures to show the doctors and they said that it helped them be able to see it.

Does anyone know of anything else I could possibly do to help her from turning purple? Does this sound like raynauds?