NewMe

Hi Stacy, welcome.

Ive come here everyday hopeing that someone wouldve responded to my many concerns on this same issue. My now six year old boy has had several swollen lymphs just about since onset of birth. Though they are now slowly increasing in size. Prominent, on left neck, and seems to redden and warm if he is not feeling well. It is soft and they say movable, not fixed. They noticed another large lymph again on the left side but of his lower head area. He was up for removal and biopsy. Ironic enough, the day prior to his surgery, he was rushed to PICU via 911 from school. Starting haveing episodes of weakness, heart racing, collapsing yet not losing conciousness. Would grasp chest stating cant keep up, would complain of nauseasness and once vomitted. Gets really pale, clamy sweat and perioral cynosis. Blue/gray around mouth. Had wacky ekgs and determined that they were artifact, also had video monitored eegs and mri and came back that he has rt frontal vein angioma. Ped Nuerology Surgeon says it normal and nothing to do with his symptoms yet when asked what he considered normal, he stated 1% of population, which i personally find to the contrary. So after releasing him after his 2 wk stay, they came to the conclusion that they dont know whats wrong. One says possible ventricular tachycardia as the 911 medics got a bad ekg reading that would read bijiminy which makes the heart race at a very very rapid pace. Anywhere from 300-1000 beats per minute. They 'reassured' me that it had to be wrong, artifact they call it, because he wouldve died. WOW..... so no pulmonary, no neurology, no cardiac (with main heart), they considered low blood pressure, sent him home on 12.5 mg atenolol and no episodes since. Back to the lymphnodes.............. weve still yet to hear from the dr that ws to remove and biopsy. and Ive yet to reschedule, considering he denied surgery due to not knowing what the other episodes truly were. Weve also since being released, been terminated by his ped cardiologist, there reasoning is , they dont know whats wrong with him. I now travel 2 hrs north to take him to the best pediatric cardiologist on the southeast coast. I wonder if they are all linked to this lymphnode issue.. my first cousin also learned at 16 that his enlarged node was due to non hodgkins lymphoma. He had badly swollen nodes deep within his chest, and had said that if my aunt wouldve noticed and had it looked into as soon as they noticed, they mightve been able to prevent the worse. He is in remission and now 20. Thats what scares me, genes.............Ive not helped much, as i dont anything about leukemia, but that its a blood disorder. And docs here would never mention even a clue, theired petrified of malpractice. So.....of course nothings been thrown my way in means of what it could be,, I just know that the doc after the 2nd visit, with one year in between, wnated to immediately remove it , 'better to be safe than sorry' he said. Yet all the other pushed us back. I shall call him tomorrow for an appt......................keep me posted, and ill do the same. Best of care to you are your precious child.
sorry for rambling