IS cold feet normal or am I just paranoid?

Angela - posted on 02/17/2010 ( 9 moms have responded )

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My daughter Riley was born with TGA on Dec.30, 2008. She had her surgery at 5 days old with the "switch" procedure. Lately I have noticed her feet turning white and always cold. Is this normal with a CHD? My pediatrician seems to think its normal but I don' want to call her cardioloigst and worry him if this is a normal thing. Thanks!

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Jennifer - posted on 03/19/2010

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My eldest has a 3rd degree heart block. Her limbs used to get very cold when she was little, I always found it alarming and scary. She would sleep and would feel like a corpse. She also had a lot of sweating if she was warm too. We never had this with our heart healthy children. It seemed to get better as she got older. I don't find she gets as cold now. Her sweating is also not as extreme as it used to be. Try not to worry I think it is normal for heart babies.

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Clare - posted on 08/19/2010

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my 14 month old sons feet are always cold... he has tricuspid atresia + ohter chd's nothing to worry about i reckon .xx

Katy - posted on 08/04/2010

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My son was born with LTGA, a 7mm VSD, Ebsteins Anomaly and Pulmonary Stenosis, his feet will sometimes get cold, and he sometimes gets clammy, we always know when its time for his medication, it's like clockwork really, at the 12 hr mark he starts to get clammy and so we give him his meds. He hasn't had surgery, so I'm not sure if there is a difference but I wanted to tell you its NEVER EVER EVER a problem to call your Ped. Card. to ask if your worried, or if something is wrong to go in and be seen. I'll tell you a very fast story, and this is why I LOVE my son's Dr.

We were at the mall one day, just me and my son when out of no where he says his heart hurt him, clutching at his chest. I dump our lunch, grab him and we leave, as soon as he's in his car seat we're on our way to the Dr's, me calling as we drive. I leave a message, they called back like 2 minutes later and said, get it here, we've bumped an appt for you. We get in, they do an ekg, an echo and then we see the Dr..... everything was fine, nothing showed anything was wrong at all, all was the same as it was 6 months before..... then my son pulls up his shirt and said "No my heart hurts" and points to his chest were he had a little scratch....... yes after all that, and the amount of money spent, it was a scratch (he was only 3, didn't get the difference yet) but still, the whole point is, NEVER be afraid to call his Cardiologist, that is what they are there for and wouldn't you rather it be a little "scratch" then a major problem.

Sheila - posted on 06/18/2010

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I know at times I thought I was being overly worried or narotic about things with our daughter (AVSD) and I didn't want to call and be 'bugging' the cardiologist or doctors for nothing but what I've learned is that if something is concerning you or you think there is an issue you should follow your gut and call. It's better to call and be told it's nothing then not call. Always follow your gut, ask until you're comfortable with the answer.

Rachael - posted on 05/15/2010

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Thanks for posting about the sweating. My son 12 month old son has Ebstein's Anomaly and has had two of his three surgeries. He sweats like crazy whenever he sleeps - nap time, night time - no matter the temp of the room. I have been kind of curious about this but not worried. It seems like it's common for a lot of heart babies. My son's feet don't get cold or blue since his last surgery. But I second what some of the other moms have said - if anything concerns you, please don't hesitate to ask your cardiologist. That policy has saved our son's little life more than once.

Emily - posted on 03/14/2010

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My son has HLHS (Hypoplastic Left Heart Syndrome) and he has been through two of his three open heart surgeries and his little extremities seem to get colder then other babies, but it is not nothing to worry about it is very common with babies with any heart defect, my son also sweats in his sleep, but that is also very common. Just keep an eye on skin color changing tones and never feel like you are bothering your cardiologist they are there to help and calm and concerns.

Kathy - posted on 03/13/2010

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Hey Anglea, What I have learned over the past four years with my son who had open heart surgery when he was one, is to go with your gut.. if you have the slightest feeling something could be wrong call the cardiologist! They want to know, because you know your child better than anyone! I use to worry about " overreacting" all the time.. but when it comes to our children you can never be to safe!! I hope I was some help! Good luck and I hope all is well with your little one!

Joni - posted on 02/18/2010

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My daughter is 10 months old and had the switch at 9 days. Her feet are cold and white alot of the time, but so are mine sometimes. Just remember a couple of things. one: you are never wrong in calling your cardiologist, because I am sure they have heard way stupider things than that, and are expecting parents to call when they are worried about something, and two: as long as she is not blue (lips, hands, feet) then she is probably ok. Just invest in lots of little, tiny socks. :)

Julia - posted on 02/17/2010

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Hi Angela - my son was born with TGA too and had surgery at 14 days old with the switch as well. I noticed too that when he was very young (he is almost 5 now and I don't notice it as much) that his feet would turn white/purple and were cold. I finally spoke with my ped. and card. at the time and both said it was normal. I hadn't noticed it in my other kids though and it freaked me out. But, I have noticed that my youngest son (now two and with a healthy heart) will have the same thing happen to him and he is totally healthy. I hope that helps!

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