Wow, I'm shocked and somewhat relieved that there are so many others out there with similar problems.
I'm new to this site and unfortunatly have no answers but I can comment on our situation and the tests we've done to date.
I have a 18 month old daughter. Since birth she's been completely normal, developing a little better than average and very healthy. About 5-6 months ago we started noticing blue lip spells that would last a few minutes up to 10 mins. She'd also have very cold hands and feet along with the blue lips. I was told it's mostly related to circulatory issues by my doctor and that most toddlers grow out of it and not to be too concerned. Then...
2 weeks ago my daughter was at daycare when she was calmly playing on the carpet. Her whole mouth went blue (opposed to just her lips) and minutes later she completely collapsed. She was not breathing, non-responsive with eyes wide open, limp like a rag doll. My daycare provider (who's also my sister in law) picked her up, started shaking her and yelling her name. After about 20-30 seconds (approx) my daughter came to, took a deep breath and started wailing. She was taken to the hospital in an ambulance where after numerious tests was found completely normal except that she had a very minor case of pneumonia. The doctors had no answers but only said to bring her back if she ever goes spontaneously unconscious again. Yeah... thanks for that advice!
Since then we have seen 1 pediatrician, (countless doctors in the hospital) and now a pediatric cardiologist. She's had 5 ecg's, 2 rounds of chest x-rays, 3 O2 tests, a 24 hour holter heart monitor test and today we had an echocardiogram. All of which came back completely normal. The only thing that was found was a VERY minor heart murmer noticed by the pediatric cardiologist, who said in no way could such a slight murmer cause her to suddenly loose consciousness. We're scheduled to do a 48 hour holter heart monitor test. The cardiologist wants to monitor her heart when she has a blue lips spell but so far every test we've done has not been in conjunction with her getting blue lips. We have been told to take her pulse if we notice her lips are blue or best case scenario take her to a doctor or hospital to take her blood pressure while the has blue lips. They don't think they're connected but there's no way to verify until they see how her heart reacts while she has blue lips.
The next step for us it to go to a neurologist to test brain wave activity. Our pediatric cardiologist said it's possible the passing out was a seizure. Apparently you can have seizures that don't involve convulsions. A friend of mine had a similar thing happen with her son (with out going unconscious mind you), where he was sitting there, completely unresponsive staring off into space. Their neurologist said (I'm summarizing based on what my friend explained to me) that in many cases Toddler's brains and bodies can tend to develop and grow at slightly different paces and can't always relate to eachother. When this happens it can result in a seizure as the body's way of resetting itself. Apparently they just outgrow these seizures as their bodies grow and develop. Whether or not we're having seizures is yet to be determined.
We'll be having our first trip to the neurologist in about 3 weeks. I'll update with any new info that we find.
exact same thing happend to my 6 year old @ school. HE fell over in his chair and slightly shook with his eyes wide open- his lips went blue and his face grey- they stuck him w/ an epi pen because they thought he was having a peanut allergy, but it was not- had eeg- came back abnormal- will be mneeting w/ neurologist and then MRI- will keep you updated. Now I have taken him off of gluten- seizures can be related to celiac/ gluten intolerance if not treated
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