Pediatric Heart Expert Forum
Don't know where to turn to next..
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Questions in this forum are answered by pediatric cardiologists, cardiothoracic surgeons and anesthesiologists from The Children's Hospital of Philadelphia. This forum is for questions and support about pediatric heart problems, symptoms and topics such as heart murmurs, palpitations, fainting, chest pain, congenital heart defects (including management and intervention), fetal cardiology, adult congenital cardiology, arrhythmias and pre-participation athletic screening.

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Don't know where to turn to next..

My daughter is 8 years old and has for some time now been suffering with blueness around the mouth and nose, it has been getting worse in the past few months. She has a persistent blue grey tinge around the area at night it tends to blanche to extreme white particularly when she sleeps however it can do this at anytime during the day also. Again at night she is very sweaty so much so that I can have to change her pillow and pyjama top, this also happens after exertion extreme white around area and excessive sweating, I say excessive as her friends are dry when she is wet through.She often says she is tired and occasionally gets headaches. She also can complain of strange feeling in her hands as if she is holding something when there's nothing there. The frequency of the whiteness is increasing and last week she said her heart feels like its racing and she had to catch her breath. I had the doctor refer me to a local hospital and I went today, the nurse weighed her and took blood saturation level which was normal ( we had been sitting for 30 mins reading a book prior to)  consultant checked her eyes and gums listened to her heart for literally 30 seconds and told me ' nothing to worry about its normal she has acrocyanosis, she sweats because that's what children do, if she can walk around normally then she's fine, treat her as normal and I'm discharging you', we were in his room total of 5 mins, he added as I left, ' you have to trust me I'm a doctor'. I told him she was born with a hole in her heart and he said, ' well she hasnt got one now'. I felt like an idiot. I'm deeply concerned about her as I feel it's something more, I'm not neurotic I just feel let down by the NHS and don't know what to think or what to do now.
773637_tn?1327450515
Dear Frizlinmay,

Without more history and an evaluation, it is very difficult to say what is going on with your daughter.  Is it possible that all of this is nothing to worry about?  Yes.  However, could it be something cardiac?  Less likely, but possibly.  I would definitely consider getting a second opinion about this, if you feel like your concerns were not addressed adequately.  It would certainly be more concerning if she was blue inside her mouth (gums/tongue).  If these blue events are not causing her to have decreased energy or exercise tolerance as compared to her peers, her ECG is normal, and her examination is normal, the likelihood is that it is not significant.  But, this may require further historical and exam assessment for me to have a better sense.
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hello i am 16yrs old no specialist nor nothing i have tretalogy of fallot and it seems that ur baby might have tretalogy of fallot the same symptoms as me when i was born they refer to babies like that as blue babies ive had open heart surgery's i beleive u should go to a doctor or cardiologist soon my cardiologist says to me when it happens rush to the hospital... please file an appointment soon so ur baby can be taken care of
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