I have many autoimmune diseases (Lupus, Rheumatoid Arthritis, Fibromyalgia, Raynaud's, Celiacs, Sweet's Syndrome, etc.)
From the time my daughter was born and placed in NICU (4lbs 3 oz, 38 weeks gestation), she has been a "mystery". She was breastfed, but when she appeared to have a neonatal lupus rash, orders were to discontinue with mothers milk, and put on Nutramigen. She had irregular heart beats since utero, but went undiagnosed for 2 years. At 3, she had a pacemaker put in for a 2nd degree heart block. Now, at 7 years old and only 38lbs, she is having bouts of 180-200bpm, at resting rate, lasting upto just under 6 minutes. Pacemaker has been recording these bouts for 4 years now. Nurse explained to me that her pacemaker is constantly kicking in when it shouldn't be (70-100bpm), even though it's set at 60bpm. Her visiting cardiologist has passed her case on to another cardiologist that we will not be seeing until fall, as we live in small city with no pediatric cardiologist. Should I be asking for a referral to leave the city to see a cardiologist sooner? How dangerous is this?
Without evaluating your daughter, I cannot say what is going on. It is well known that children of mother's with lupus can have varying degress of atrioventricular block, so the (eventual) requirement of a pacemaker is certainly expected. This happens because antibodies created while the baby is in utero crosses the placenta and can partially or completely damage the atrioventricular node.
At this point, however, I am concerned that she may be exhibiting what is called brady-tachy syndrome, which is something that can occur with a pacemaker. It typically requires reprogramming by a pediatric electrophysiologist (a pediatric cardiologist with special concentration on the heart's electrical system), however. It could be that she also has supraventricular tachycardia or some other arrhythmia, although this is not clear. I would definitely recommend that, if you do not have local access to a pediatric electrophysiologist, you go seek one out who has lots of pacemaker experience so that you can get the best care for your daughter.
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