Hi my name is Dai. I have a young nephew who is 13 years old. He has a condition in which he develops chronic fits. He has been diagnosed in Australia that nothing is wrong in the brain. Just lately, a doctor has relate his condition to LQTS. I'm seeking advice and help as to what is wrong with this young boy and what is causing his condition and find out if a cure is out there for him or any clinic where this condition has been successfully cured. I would greatly appreciate any advice.
Hi i read your post. In one area i am just a little confused...or make that two areas. When you say "fits" what exactly are you describing? Are you talking about fainting? Are you talking about seizures? Are you talking about something that happens to him physically that is not normal? The other confusing point for me is that you said in Austrailia the ruled out any neuro problems...and said that just lately a doctor is relating his condition to LQTS...i would hope that the doctor that you are speaking of is a heart doc because they genuinely are the ones who diagnose LQTS which can be a pretty serious condition and a doctor "relating" his condition to that sounds really strange to me. Did he have a series of tests with the heart that the doctor came to that conclusion? Like an angiogram, or echocardio, or holter, or EP mapping done? I think the answer lies in the type of doctor that he is seeing and whether or not that doctor is a heart specialist and the correct tests were run on your nephew and LQTS was the final diagnosis. It is a very specifc and fairly rate re entry diagnosis and like i said very specific tests have to be run for the final conclusion of diagnosis. When it comes to the heart there is no guessing allowed or "my thoughts" type of conversation. Its simple either you do or you don't. I know that ICD's are very successful in these cases but unless you aren't 100% sure and the tests were run i wouldn't even go there yet....keep us posted......................
Unfortunately there is no cure for LQTS, only treatment. In some cases LQTS can be a temporary condition caused by taking certain medications, electrolyte imbalances or dehydration, malnutrition. Since your nephew has been told that he has LQTS by a doctor (hopefully a cardiac electrophysiologist) these other conditions have probably been ruled out.
Seizures (fits) are quite common in LQTS, particularly in LQTS type 2. The seizures are not from a brain problem, but caused by hypoxia in the brain from lack of blood flow during a heart arrhythmia.
I would recommend that your nephew's family seek out an experienced LQTS heart rhythm specialist-EP. There are groups online who can help find doctors in your area of the world. A good one is www.sads.org. There are also SADS divisions in other countries. Have your relatives contact SADS to help find the right doctor.
LQTS is usually diagnosed by a simple resting ECG, stress exercise test... simple tests but they need to be looked at by a specialist. Adrenaline testing is useful in Type 1 LQTS and genetic testing is helpful in 75% cases of LQTS.
Since your nephew is still having seizures while on medication he could have an ICD for added protection. Also, everyone in the family needs to be evaluated as this is genetic and is passed down to 50% of family members.
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