My son is 8 and has had 4 heart defects repaired - pda, coarc, av canal and resection of muscle bar that goes from LV to aortic valve. Hypertension at birth. He has 25 as a gradient in Jan. He has subaortic stenosis, and some LVOT obstruction. He had a concussion 1 1/2 yrs ago and had zoning out symptoms among many others, but in Nov last yr started with fainting induced by exertion or activity. He has pain in tummy, starts gagging like he is going to vomit, lays down unresponsive while he is dealing with breathing and pain, starts choke coughing, mucous or reflux comes into mouth, sometimes his eyes roll back, sometimes he passes out and is in and out with fatigue. He may also lose bowels. If he has all of symptoms he may be in and out for 30 minutes afterwards and BP has dropped down in low 80's one time it showed in ambulance. I have one dr who feels it is straight syncope and another that feels it may be from LVOT but is unsure. Still looking at case. He also has severe sleep apnea and hypoxemia from 2 sleep studies from 2 places O2 dipping down to the 70's and 80's a few seconds at a time in the night. He is having events several times a week with little activity/exertion. Is there anything else to look at? Only had TEE and echo in Jan. Many more events started happening in March. Adjusted synthroid in Dec slightly which helped with major fatigue he was having before(Not out of range but went to one end and it has helped alot.) Now trying to go to a university to have cardiologist and neurologist look at it. Any ideas and how can he live like this and not do any kid related activities for years. I just feel not many tests have been done.
You need to see a carddiologist at a MAJOR university cardiology clinic. Does your son have hypertrophic cardiomyopathy??? (LVOT) If so, you need to see someone who can deal with this disease as it is VERY rare and the fact that he is having syncopy, it can cause a sudden death event. DO NOT allow him to play sports until he has been evaluated. If he has HCM than everyone in the family needs to be evaluated as it is generally genetic in nature. Your son should have had a 72 hr Holter done and EKGs and Echoes as well as a stress test which is used to check for problems with the heart while excersizing. He should also have an EP Study done to check the electrical system of the heart to see if there are extra electrical pathways in his heart. You need to get him to a doctor who knows how to evaluate him properly!
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