I have been battling with doctors for the last 9 months about my daughter and what I believe is a heart condition. Since she's been 5 weeks old (now 11 months) she has had this blue around her mouth. EVERYTIME they keep telling me that it's just because she's fair skinned. She had a difficult time nursing and still has a difficult time with a bottle. She is in the 5th percentile for her weight at 17lbs and has been put on a higher calorie diet. She has had 2 chest xrays (one stated she had fluid in her lungs), ECG's and one heart ultrasound, but none done with paediatric cardiology specialists and they've come back normal. She has fevers regularly that can last up to a week but has had blood work done and it comes back that there is no infection. She has had 3 of these episodes where her body has turned purple, her lips have turned blue and she had gotten completely lathargic. During these episodes her heart rate has skyrocketed to 210+ bpm and one of these times it was right infront of my paediatrician in the hospital, and she still seemed un alarmed. The first time this happened, I phoned 911 and she was rushed by ambulance to the hospital where they dismissed her and said that she has a fever and she had a seizure because of her fever (although I've never known for them to turn purple and blue when this happens and the paramedic even stated that her heart rate was awfully high for someone who had a seizure and it was lasting a long time). I guess my question is....can you have any of these tests and have them come back normal? Can a Holter Monitor be used to find out his condition? Is it something that just kind of comes and goes? I firmly believe that there is a problem with her heart and our family doctors said that there is not a doubt in her mind that there is as well and it sounds like she has tachycardia. I have taken her to 4 different hospitals in search for answers and have FINALLY gotten a referral to a paediatric cardiologist, which seems like is taking forever. The paediatrician doesn't believe that there is anything wrong with her but can't answer why she has these "episodes" and is sending her to have her seen just to rule everything out. I don't believe this is "normal" behaviour and am hoping someone has some kind of insight or experience with this? Is this dangerous? Could the ECG's have missed something? With her heart being so small at 2 months old....could the ultrasound missed something?
P.S. NONE of these test have been performed since January BEFORE she started having the episodes of her turning completely purple and her lips turning blue and monitored heart rates of 200+, which means that she's gotten worst...
I'm so sorry you're being ignored and pushed from one place to another. It is not normal for a child to turn blue/purple like that unless they're extremely cold. My youngest son would get blue lips if he played outside in the evenings as it cooled down.
It seems to me that if they have recordings of her heart beating so fast (even too fast for an infant), then a pediatric cardiologist needs to take a serious look. It may not be a dangerous life threatening problem but you need to know that for sure.
When I was an infant my mom said she was afraid to go into my room at times because she would occasionally find me looking almost dead, rather blue/gray and lethargic. For years some doctor said I had epilepsy. It wasn't till I was in my teens that another doctor said it was my heart; I did NOT have epilepsy. You'd think someone would have figured that out after all the EEG's I had during my childhood.
As a young adult a doctor told me it was PSVT, a type of tachy that just comes and goes and is uncomfortable but not deadly. There are treatments for PSVT and some other forms of arrhythmias but first things first. The doctor has to pinpoint what is happening in your daughter's heart. There are so many advances made in cardiology that I'm sure they'll give you some encouragement and hope. Keep pushing for answers.
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