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Hi I'm sorry I dropped out of site. Honestly been enjoying some nice weather with both my girls...I have a 4 year old as well. I put gloves on Amelia the one day....but haven't the others to watch what would happen. Her hands stayed much colder than mine and my older daughter but I did not notice the bluish color as much as I did while she was sick. I am still trying to determine if it is something entirely different and if I should be more concerned. Millie was born at 38 weeks ...22 inches...and 8 lbs 4 oz. She is lactose intolerant...don't know if that means anything or nor. I hope Jacob is doing better. She has not had high BP or heartrate thus far.

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Tally

Hi Karen, Renee Here. I started on this webforum when my daughter was about 18months and now she is six and a half and in Grade one. She can read and write and is strong. You have already been through so much. My daughter turned out to have hirschsprung's, Erythromialgia, Juvenile Rhuematoid Arthritis and Raynaud's. But started out with Raynaud's. Not trying to frighten you. This page has been through all of the diagnosis and hard times for us and we keep coming back to it. This place is loaded full of little angels. It also has many many people who will pry for you and your son, me too. You are in good hands by the sounds of things.
I know that it will all work out for the best and always remember that you will get great support here.
Warmly Renee

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My 6 year old has had severe secondary Raynaud's all of her life. She makes use of a thermal stabalization assistance dog.

It's been such a long time since updating! Been busy with sick little boys, doctor's appts and life in general.
Here's the latest update:
The cardiologist, the rheumatologist, and the nephrologist all say they have found nothing to be concerned about. Can't remember if I posted about the fact that while seeing the rheumatologist on March 10 that his blood pressure was running a bit high around 110/65 and his heart rate on the EKG done that day was running around 140s. The nutritionist also saw him that day and wanted to concentrate on getting his weight up (19 lbs at 18 mos). He had to drink pediasure and carnation instant breakfast with his whole milk, had to eat fattening foods and more often. He gained about a pound or two more, but recently had diarrhea so it may have set him back a little again on the weight.
All in all I am happy they are not seeing anything to worry about . I did ask the rheumy if the ANA test was done, she said she didn't see a reason to warrant having it. Guess it is back to just taking care of him not getting blue hands and arms, keeping him double layered while even in the house and keeping house warmer.

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Karen
- mom to baby Jacob (18 mos), recently diagnosed with Raynaud's.

Update:
It's been a while and so much has been going on...
The Nutritionist is still seeing him because of his poor growth. He didn't gain any weight between 2 of his appts so she had him only drink PediaSure and Carnation instant bkfst, as well as eat lots of fattening foods. Then a week after he came back in and gained 1 lb 3 oz!! She was very relieved as were we, because if he hadn't gained, she would have admitted him and put in a feeding tube down his nose to supplement him for 3 mos! Whew - glad that didn't happen. Still, she is keeping a close eye on him and watching to see that his weight doesn't slip again. We go back on May 13.
All my 3 boys have been passing viruses or something around since Feb, and finally things are getting better... but it wasn't until my 6 yo was put on antibiotics for pneumonia and my little one was put on antibiotics for an ear infection. Maybe that is what they both needed to finally kick the sickness! My almost 3 yr old is the healthiest one throughout all of this. He's adopted from Guatemala and we brought him home this past Aug. It's been quite an adventure here and lots of stress due to the adjustment of having a new 2 yr old and all the Winter/Spring viruses.

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Karen
- mom to baby Jacob (18 mos), recently diagnosed with Raynaud's.

Edited: 05/05/2009 at 08:35 PM by mom2jacob

Karen, thanks for the update and I am glad to read that Jacob is starting to gain weight.

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Secondary Raynaud's with a connective tissue disease

Hello Ladies,

My daughter was diagnosed with RP when she was 6 months old. She had symptoms since the moment she was born but they were blown off.
We had testing done and decided that it was primary, not secondary.

She is now 3 1/2, and we have since found out that both her Grandma and Great Grandma have primary RP.

Her hands and feet get cold very easily, she doesn't like to carry cold things, she wears smart wool socks in the winter, very insulated gloves, and hats with ear flaps. (We live in Idaho)

For the most part she seems like a very normal little girl. I think things may get a little more tricky when she starts school. I'm worried about her staying warm there in the winter.

The other thing we've run into is her skin peels off of her fingers and toes. I'm not sure if that's related to RP or not. It is worse during the summer months.

Good luck with your kiddos!

~Angie

Edited: 01/11/2011 at 09:20 PM by Raynaud's Association Moderator

i have a 19 mth old that was diagnosed with raynauds, they havent done any bloodwork, or refeer us to any other drs, her symptoms r getting worse, she looks like may be starting to get ulcers. any advice what to do

hello all. i am new to this and am so happy to have found a place to share and learn. my son was diagnosed at age 5 with primary raynauds, after a year of episodes, visits to the doctor and being brushed off every time. finally, i found an angel nurse who had worked with the ederly for many years and when i showed her pictures of my son, adam's hands, she said "that's raynauds"! finally a diagnosis. tomorrow we go to a pediatric rheumatologist. hope for a good experience. prayers please.

does this not work anymore??

Good luck with the appointment and let us know what was said.

Karen

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I will persevere & live strong.

Secondary Raynaud's to Ehlers-Danlos Syndrome, Hashimoto's thyroiditis.

My 3.5 year old has reynauds, has been diagnosed since she was about 1.5 years old, but her GP said it was a benign condition and to just keep her warm. We did do a cardiac work up b/c my son was born with life-threatening heart defects, and the cardio said he could refer us to the rheum. but it wouldn't do much good.

She was also diagnosed with progressive scoliosis at 3 years, we have noticed that when she is in her body cast with her spine straightened her reynaud's gets better, it doesn't go away completely, but it gets better. We have the house at 71 degrees right now and her hands and lower arms are blue..she hates to go out in the cold..says "mommy, I'm freeeezing!!". Her hands also turn puffy and red.

I always get a double take from the doctors when I mention she has it, and I always get the feeling they don't truly believe it, but I took pictures and showed them to her GP, and even the cardiac doctor noted the cyanosis in her fingertips, so it's on file.

To Jacob's mom, did they do an echo on Jacob or just an EKG? If not, ask for an echo...they were (obviously) looking for heart defects, and checking his BP in his leg to see if there was a difference between his arm and his leg, indicating a problem with the heart. An echo is really the only way to get to a good read. I had to push the cardio to do an echo on my reynaud's daughter and he said it came back normal..when I read the report it was noted she has minor mitral valve regurgitation, and given my son's diagnosis, it is something I will be keeping an eye on!

I have not bothered to see a ped. rheum b/c it doesn't seem they can do much good, and reading the posts here has confirmed my previous thoughts..I guess there's not much to do but keep her bundled and inside..

I am trying to get answers about concerns I have for my 14mth old daughter and thought maybe you all could provide me with some information. My daughter's hands/wrists, feet and lips turn very blue (almost black) frequently each day but when you warm them or put her in the tub they turn bright red. Can Raynaud's affect the lips too? It is odd to me because her color is very good when she is sleeping (even though her room tends to be chilly) and when she first wakes up, but as soon as she becomes active she turns blue. It also tends to be worse when she is eating. She is very active when she is awake but does sleep alot and developmentally is doing very well. She weighed 8 lbs 7 oz at birth and had just now doubled her weight, weighing 17lbs last week. At 2 weeks old she had severe irregular heartbeat and went through numerous tests but a cause was never found and about 3 weeks later it went away. Cardiologist and ped. were not concerned because at that time she was very healthy and gaining weight well. My ped. has referred us back to cardiologist and we go on Wed, but I know that he is thinking it is just acrocyanosis (which it may be) but I just want to have as much knowledge as possible before this appt. Also I just found that my husband's aunt has Raynauds. Sorry this is so lengthy, any info is appreciated. Thank you

My name is Christina and I also have a son named Jacob he just turned 1 december 12th. He diagnosed with the raynaud's syndrome and we seen a ped reumy. And they still cant do anything for him.They said he is to young for medicine. Do you have any ideas that works to help there hands and feet because my son sometimes cant walk when he has his episodes or even hold on to a sippy cup. And I am really sorry to hear your baby has raynaud's. I keep looking for something to help him and I just can't seem to find anything that will help him. It is just really weird because my oldest son Riley is 2 and he has never had any of this but my youngest does.If you know of anything please give me some ideas i would really appreciate it I just feel so helpless that I cant do anything for him Thanks

And again Thankyou and I hope they find something to help your Jacob

Christina And baby Jacob Lee

Insist on a second opinion. My son has several CHDs, and if the lips are turning blue there is something not right. What were the results of the pulse oximetry test? (the test that measures the amount of oxygen in the blood) Anything less than 95% should be cause for concern. Did they do an echocardiogram?

If your child has some of the symptoms above then you really should see a different cardiologist. Please post back and let us know how the appointment went?..

Edited: 02/26/2011 at 05:13 AM by Raynaud's Association Moderator

So it turns out that my daughter does not really have Reynaud's, but Acrocyanosis..as detailed in another discussion on this site. It fits her symptoms perfectly, and it's nice to have a clear answer. It's also nice to know it's not harmful and to just keep her warm! : )

Hi My name is Kate and I have four children. My youngest son is 19 months old and has had episodes of blue feet hand hands since he was born. His feet and hands are a bluish purple color and sometimes the color extends almost up to his elbows and knees. I mentioned this to his dr when he was an infant and she wasn't concerned. Once I took him to the emergency room because the bluish black color was so frightening! Of course by the time I got there the color was pretty much normal. He has no other signs of ill health. He is active, normal weight, eats like a horse and hitting all his milestones so for this reason no one seems concerned about his blue extremities. To be fair the dr always asks about it, but is never concerned. Yesterday he had his well visit and his feet happened to be blue purple. She said "OH they are PURPLE!" It was actually a pretty mild episode. She said she thinks its Raynaud's but she is going to call a vascular doctor to see if he has any other ideas.

Is there anyother specialist he should be seeing.

My son does not seem to be in any discomfort when this happens. Also it sometimes seems like it happens when he is kneeling or sitting in a way that his circulations is cut off. Of course this does not explain blue hands.

Also last week I got him out of the car and It happened to be a very warm night and we went into my daughter's basketball game. My six year old said "Mommy look at Silas's hands!! They look like strawberries" and they did. That has never happened before.

I am not too worried if he has Raynaud's especially since he seems to be in no discomfort but I want to make sure there is no underlying condition.

If anyone has any advice or comments I would appreciate it! I was going to post under meet and greet, but the "new topic" button wasn't working.

Hi all! Not sure if this still works but I would love to hear how evryone's kids are doing. My daughter was diagnosed with Raynauds by her ped when she was 20 months old. We later saw a rheumatologist who said it is not raynauds but acrocyanosis. I am not convinced we have the right diagnosis though. He dindt listen to what we had to say and had a diagnosis from the moment when walked into the room. She did test negative on the ANA test but occasionaly she tells me her feet hurt... I am so confused and do not know what to do. I would love to hear from parents who have some experience with this. Thank you.

I forgot to mentioned that one of the docs reason for rulling out raynauds is that he has never seen in on a 2 yr old. I know its rare but clearly it can happen! Also, not all Anna's finger tips turn blue at the same time, altough ocassionaly they do (mainly she is running outside and its a bit cold). Everything I've read about acrocyanosis says it is symmentric. Does it mean all fingers would be affected? English is my second language and I dont know how to interpret this.

Hi Annasmom!
Just wondering if she saw a regular rheum or a pediatric rheum? If not, I'd try to get a second opinion from a pediatric specialist. Also, one of the things I found was very useful was I took a lot of pictures with my phone during bad attacks and showed them. My great pediatritian who already always listens to me even became visibly more convinced after I showed him photos of my daughter's bright red fingers and toes. And even the rheumotologist appointment started out more "it'll be okay" and became "it'll be okay, but here's our plan for the future" after I was able to show him her hands in action. Good luck!!

Hi Tkatt,
She saw a pediatric rheum. After reading two bad reviews on him on a website I decided to ask for a second opinion. We are now waiting for an app at Duke. Hope they will agree to see her given that her bood work is all normal.
Thank you for the tip! I will try to take pics so I'll have something to show them.
Hope all is well with your daughter!