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17 Month Old Waking up with Blue Lips/Mouth Shaking Cold Hands and Feet

Hi, My 17 month old son has started waking up with blue/purple lips and the skin above his lips are also blue.  His fingernails are blue as well.  This started about a month ago, but doesn't just happen when he's cold.  He's been to a few specialists for some other issues, not sure if they are related, but he's been having fevers in the evening ranging from 100-105 about 5 times a week for over 4 months now.  He sleeps a lot (16-20 hours a day).  His hands and feet are always ice cold, even when he has a high temp. He's been waking up with the doctors think are seizures, where he shakes all over.  He had a 30 minuted EEG, which was normal.

My pediatrician didn't seem all that concerned until this new blue thing started.  I don't know if any of it is related, but I am worried about his heart.  We took him to a rheumotologist last week who said his best guess is that he has an underdevoped circulatory system.  Just wondering if I should push for an ECHO to find out for sure, or what I should do!!  Any advice would be highly appreciated!!
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Avatar universal
hello christy i am no specialist doctor or anything i am 16yrs old but it sounds like ur baby might have tretalogy of fallot i have that heart defect i was born with it and have had open heart surgery's they also refer to babys like that as blue babies i suggest u tell a doctor or see a cardiologist asap or maybe take photos of when it happens rush him to the hospital.. my cardiologist says when i get blue commonly around my lips nails fingers to rush to the hospital asap i was born a blue baby everytime when i go see my cardiologist they check my nails fingers toes lips please see a cardiologist soon :)
Helpful - 0
Avatar universal
hello christy i am no specialist doctor or anything i am 16yrs old but it sounds like ur baby might have tretalogy of fallot i have that heart defect i was born with it and have had open heart surgery's they also refer to babys like that as blue babies i suggest u tell a doctor or see a cardiologist asap or maybe take photos of when it happens rush him to the hospital.. my cardiologist says when i get blue commonly around my lips nails fingers to rush to the hospital asap i was born a blue baby everytime when i go see my cardiologist they check my nails fingers toes lips please see a cardiologist soon :)
Helpful - 0
773637 tn?1327446915
MEDICAL PROFESSIONAL
Dear Christi,

Without evaluating your son, I cannot say either what is wrong with him or what tests need to be performed to better assess his issues.  An echocardiogram is not necessarily an appropriate test for an evaluation of someone whose symptoms you describe above, but it's difficult to say for sure.  I am not sure what an underdeveloped circulatory system is, to be honest.  We do see babies and toddlers appear blue around their lips, but it is actually more concerning if it is occurring in their gums/tongue (i.e. inside their mouths).  Recurrent fevers and some of these other findings could potentially suggest an infection of the heart, but there are SO MANY other things that it could be.  Your primary care provider may end up performing an evaluation for what is called fever of unknown origin.  This may be able to help point the assessment in a better direction to get a sense of what to do next.  However, an evaluation by a pediatric cardiologist may also be necessary.
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