Lookimg for some form of understanding of prolonged qt, does anybody have any idea?

[gypsyhope]

My daughter is16, she has what we are told is called syncope episodes and we've been told by 4 hospitals that her qt is prolonged, even the paramedics have said this, but i am finding it hard to understand some things, does anybody know of prolonged qt, what that actually means?

[rilesnic]

Have the doctors mentioned a portable AED until the insurance situation is resolved? I believe they are between $1-$2K which maybe the insurance could possible help to cover. If the insurance doesn't cover the costs, maybe a fundraiser to help raise the money? We have AED's in the offices in our school district and several employees have been trained to use them in case of a cardiac emergency. The U.S. insurance situation is going through a terrible time. I do hope our "voices" in Washington step up and do what they need to fi these problems. Sending good thoughts for your daughter and you.

[MichelleP_3811]

I don't have much to add about your daughter's condition except to say it may be prudent for her to get an ICD implanted in case of cardiac arrest it could save her life.  I might also suggest that you get yourself an ekg and make sure you don't have any long qt yourself considering your aunt and uncle died very young.  I would say definitely avoid the use of cold and/or allergy meds and even look up any other meds that might complicate the condition.  But I completely agree with you on the health care issue.  It saddens me that health care in the US has gotten to this point.  It is such a mess and Obama is doing his best to try and fix it but the problem seems to be getting worse.  It is a shame that people have to go to the ER to get help for a cold when they have no insurance so the costs for everyone else are through the roof and yet it saddens me to hear someone have a conversation on a plane with their companion that health care should be solely pay to play.  I wonder how they would feel if the shoe were on the other foot.  Health care should never be about age, social status or ability to pay.  And I would think if you ask most medical people they would agree and yet the battle rages on.  Well my best to you that you get your daughter the proper help she needs to live a long life.  I will send out prayers that her angels keep a special eye on her which I am sure they are already but some extra prayers can't hurt.  Take care and stay strong.

[gypsyhope]

Thank everyone above for helping me. Penn state Hershey hospital, the cardiologist there has told us how severe the situation appears to possibly be. My daughter had 7 syncopes in the period of 30 days, plus one in the bathtub that I caught in time. A cardiologist at Hershey stressed the importance to me and my husband of this matter, not to mention during the 5th syncope, she had a closed head injury, falling according to witnesses, on concrete. I have also been told how serious by a  cardioligist at Gettysburg hospital, as well. I am starting to learn now. I was told by Hershey hosp. that my daughter needed genetic testing in order for them to figure out what type it is and how to treat these particular episodes and it could be long qt syndrome. A problem arose and my insurance company would not work with Pennsylvania, only Maryland the state in which I live.. she was taken to Pennsylvania because we live right on the border of pa and it was the closest hospital to where we live. We were informed by the cardiologist at Hershey that he ran into a problem as well, that he literally had to argue with john Hopkins hospital cardiology and the insurance company in the state in which I live to get them to test her for this, and treat her for this and he offered all his test results to them as well as all of the ekgs, and we offered all ambulance reports including ambulance eegs and ekg reports all those records to both hopkins and the insurance company as well. But it appeared as if hopkins was not interested in all of these things, one doctor even pushed these reports aside saying that the ambulance eeg / ekgs / with pvcs on it, and blood pressure readings even when done manually are not always correct. My daughter has been banned from going to school after having a syncope episode there, the board of ed superintendent sends a tutor to our house three times a week. She was also a volunteer at the ambulance co before this, but due to having a syncope there she is not allowed to go there either.  Anyway Hopkins and the insurance company has finally decided to go ahead with the genetic testing and how to treat this, Hopkins as well placed her on beta blockers because Hershey had put her on them.. and they seem to be helping as long as she doesn't have much of an active day. hopkins is also testing her genetically through a company named gene dx. Meanwhile we are told that this is going to take sometime, and we are learning that she can fall into cardiac arrest still even though she is wearing an event holster monitor. we don't wish to rush the testing, that would be dumb for they might miss something. and on the other hand my daughter spends everyday wondering what may happen to her. at the same time, my daughter that was normally very active, going to school, achieving good grades and studying to be a medic, worries with a form of depression of what might come. I try very much, or very hard to act as if everything will turn out just fine, but even I am not certin of this, learning what I have learned, I think what worries me the most, that hopkins tells me that they may never find the right gene, for it may take to long. additionaly, they might not know how to treat it. lastly I apoligise for the legnth of this statement, but now I am learning... there is no magic pill, no cure and there will be always the fear of a final syncope and cardiac arrest. My thought is this, all of these athletes that die from cardiac arrest and all of the famous stars we hear of on tv dieing from the same, right down to my own grandmother and uncle who died in there 40s mysteriously of cardiac arrest. Why dont the public and doctors, and news media speak more of this, is it that they dont know more of it... or that they're told not to speak much of it. I wonder if this is due to the outrageously overpriced cost of the testing. a price that the largest amount of americans can not afford to pay and insurance companies will not. I dont like this thought one bit at all and I dont think that anybody else would if they were in the same boat. People will probably criticize me and down me for saying this, but refusal of medical treatment in a life threatening situation, its not only wrong, it gives no credibility at all to humanity, for those of you who had the time to read this post, God love you and thank you, and whatever your criticizum  is, I understand, but I am not giving up!!

[spade22]

Is your daughter under the care of a cardiologist?  If not, she needs to be.

Having a Prolonged qt is not the same as having long qt syndrome and  a cardiologist will need to run tests to determine which of these your daughter has.  Qt syndrome is a very serious genetic disorder which can lead to sudden death.  If your daughter has this condition, other family members will need to be tested for this because it is a genetic condition.

A prolonged qt (in the absence of qt syndrome) is also serious and as mentioned above, certain medications can prolong it further which can be dangerous.

[achillea]

What Is Something Wrong said.

This is a dangerous condition and it must be treated for the sake of your daughter's life.

Here is more information that both parents and children who are old enough to understand should read:

http://www.mayoclinic.com/health/long-qt-syndrome/DS00434

[is_something_wrong]

A prolonged QT time means that her heart is repolarizing (recharging) too slowly after the electrical impulses "fire" and the heart beats.

This is a potentially dangerous condition because a slow recharging may be disrupted by spontanous depolarizations which are causing a dangerous heart rhythm (also known as the French word "torsades de pointes"). The fainting is probably/possibly caused by this rhythm.

Dependent on which form of long QT syndrome she has, different triggers may cause this dangerous rhythm (in some cases it's exercise or stress, in some cases it's resting, high noises, etc), so it's important that her doctors find out which form she suffers from. What is even more important (I can't stress enough how important this is) is a treatment (the condition itself can't be treated but the dangerous rhythm it is causing from time to time can). It may also be that her condition is not genetic, but caused by "something" (aquired LQTS)

It's also very important that her doctors know about this condition, because several drugs may be dangerous to her.

If she has lots of syncope events (fainting) or palpitations, some doctors choose to implant an ICD (device that shocks her heart back to normal rhythm when fainting).

It seems quite obvious that you should talk to her doctors. You need all the information you can get about this disease, it may save her life. A forum with no doctors like this one is simply not good enough here..

Take care. I wish you both the best.