Lil Miss finally got in to see a pediatric cardiologist this past Thursday.
My baby girl is 4 1/2 years old now and it seems that she was a big fan of the blue colour she was born with and has been finding ways to try to maintain that colour ever since.
Yup 4 1/2 years of randomly turning blue with no real reason for it.
Well OK at first it was bradycardia and apnea that did the trick. I thought maybe it was still the same thing since there was no real reason ever found for those episodes.
That's why the cardiologist. We went to Children's Hospital for another Echo cardiogram, ECG, and a consult with the specialist.
Know what he found? Not a thing. Huge Praise God for that one! The heart looks great.
So then why so blue? Well the Pediatric Cardiologist said she has something called Acrocyanosis.
Scary word I know. The truth of it is though it is a cosmetic disorder, and not life threatening at all. Again PRAISE GOD!
Tears of relief filled my eyes as Lil Miss and I walked out of the hospital. No one wants to ever see there child turn blue, and to feel as if no one can figure out why. Not having answers was incredibly hard. Always wondering what is going on, what if this is serious, what kind of damage is this doing to her body...
You can imagine I was floating on cloud 9! I posted it on facebook right away and everyone seemed to be rejoicing with me. What can I say my Lil Miss is a very special little girl who just has a way of getting into peoples hearts.
I started researching a little bit online wanting to know more about this rare condition. The word cyanosis refers to the blue colour her skin turns, Acro is the extremities. In other words Arcrocyanosis is the hands feet and sometimes the lips turning blue.
Wait a minute here.
When my Lil miss changes colour it`s her whole body. It starts in her face 98% of the time, but rapidly spreads. Yes her hands and feet but also her arms, legs, back, stomach, and entire face. She looks like she is one big bruise.
I start to read more...
What is cyanosis?
Cyanosis refers to a blue or purple hue to the skin. It is most easily observed on the lips, tongue and fingernails.
Cyanosis indicates there may be decreased oxygen in the bloodstream. It may suggest a problem with the lungs, but most often is a result of mixing blue and red blood due to defects of the heart or great vessels. Cyanosis is a finding based on observation, not a laboratory test.
Return to Top
"Acrocyanosis" refers to the presence of cyanosis in the extremities, particularly the palms of the hands and the soles of the feet. It can also be seen on the skin around the lips. Acrocyanosis is often normal in babies, provided it is not accompanied by central cyanosis.
"Central cyanosis" refers to the presence of cyanosis on "central" parts of the body, including lips, mouth, head, and torso. Central cyanosis is never normal, and is almost always associated with a decrease in blood oxygen.
Return to Top
Why cyanosis occurs
Central cyanosis occurs because blood changes color in the presence (or absence) of oxygen. Red blood has ample oxygen whereas blood with decreased oxygen turns blue or purple. Red blood flowing through capillaries in the skin produces a healthy red-pink color.
Blue blood causes a blue-purple (or cyan) tint to the skin.
What conditions cause cyanosis?
Cyanosis is usually caused by abnormalities of the heart, the lungs, or the blood. Under normal conditions the red (oxygenated) blood delivers oxygen. The returning (blue) blood is shipped to the lungs to collect more oxygen.
Abnormalities in the lungs can cause some blood to flow through them without collecting oxygen.
Heart abnormalities can cause some blood to bypass the lungs altogether.
Abnormalities in the blood can decrease its ability to absorb oxygen. The common denominator is that blue blood is pumped to the body.
Finally, having far too many oxygen carrying cells (polycythemia) can also cause cyanosis.
This was found on http://www.cincinnatichildrens.org/health/heart-encyclopedia/signs/cyanosis.htm
K now it sounds a whole lot more like centralcyanosis to me.
I know it`s not her heart at least. So I am thinking so many things... I need to get her lungs checked and her bone marrow, and that connective tissue thing. Where do I start.
I`m mad too. For years I have been going to the Dr only to be told it`s not happening often enough to do anything. Just keep her home don`t go to the hospital unless her tongue turns blue.
And then there`s the pediatric cardiologist. He didn`t test her for acrocyanosis to confirm it, and he didn`t tell us it`s probably this, he said it is this.
My daughter turns blue from head to toe and I feel like no one takes me seriously.
So the fight for a diagnosis continues.