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04/05/2012 06:54 AM

When death plays Hide and seek , I'm learning

Posts: 1
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When death plays Hide and seek

Please read the story of my daughter Skye and pass the word around about long qt syndrome, you may save many lives. I spend everyday thankful that my daughter is with us and enjoying my time with her. I also spend everyday worrying when the next episode is going to come and if she will make it through it. Skye was a straight A and B student at high school, then at night was taking and doing very well in emtb classes with mfri, as well as riding with and volunteering at rocky ridge FD and at the town ambulance co. She is 16 and she had a bright future and hopes and dreams to tackle the world. Then along came long qt syndrome. Now the pediatric cardiologist has her on bed rest confined to home, She has been placed on home hospital schooling where the board of ed sends a tutor to our home, she can no longer attend the ambulance co. because she had a syncope episode there and got a closed head injury, she can not attend school b/c she had a syncope episode in class one day, then a generalized tonic colonic seizure on the bus stop while waiting to go to school another time, she has also had seizures and syncope at home, she has tachycardia, pvcs, pacs, and severe hypotention, 80/30 as well as a prolonged qt interval, all thanks to long qt syndrome, a little understood, often overlooked, almost always misdiagnosed, often fatal heart condition. She just went to JHH to get genetic testing on 3/8 to see if she has the types of long qt that will require her to have a defibrillator implanted in her heart. She has to wear a cardiac event monitor 7 days a week 24 hours a day, and is already on beta blocker therapy for this, which may or may not help.. but if you know Skye.. she is high energy and cheerful.... the beta blockers have made her tired, cranky and the long qt has taken everything away from Skye except for her family and her life. Over the past month we have had 7 hospital admissions for 2 or three days at a time, we have spent more time in the hospital then at home, Skye has suffered and our lives have been turned upside down, and she has been going through a living hell. Making it worse is that 50% of the people diagnosed with long qt syndrome have a lifespan of only 10 years from the onset of the first symptom, little is know about how to treat this deadly disease and there is no cure, on top of that long qt has virtually no awareness, It is often overlooked, misdiagnosed as seizure disorder, narcolepsy, or something like that, what we didn't know but learned the hard way, and what doctors didn't tell us until we did our own research, is that in some cases and often times, your qt is only prolonged during the time of the episode and then will go back to normal when you are not having an episode, this is where the hide and seek disease has room to kill people, because it is not detected. In Skyes case, 2 years ago after Skye complaining of palpitation and chest pains an ekg caught a prolonged qt, we took her to a cardiologist he attempted to do a 24 hour holster monitor but the leads all fell off within 20 minutes so it was inconclusive, he then took a 20 second ekg. He convinced us that the ekg was sufficient to diagnose this as a fluke and that the qt went back to normal, corrected itself. He said there was no problem with her returning to activities and that she was fine. ( But we found out 2 years later that the reality is, the qt corrected itself temporarily and will prolong again possibly killing you or at least hurting you.) After seeing that cardiologist and being assured Skye was fine, to be on the safe side I chose to still keep my daughter out of gym for the remainder of that year. The following year, which was last year, she did not have gym class anyway. It was half way through this year, the school changes all classes for block grading, Skye had only been in gym class for 2 days, after her second gym class is when, out of nowhere after 2 years on 1/26/2012 she had her first visually dangerous episode and has been having them every since, who knows how many times in between her qt has prolonged and she may have been having other episodes that were not as noticeable, or in the middle of the night, but being overlooked, not noticed, because we were not made aware and we were convinced that everything was fine, how many people have died either because the cardiologist did not know enough about long qt syndrome, or maybe worried that the insurance company would give him some flack, in either case shame on him. I only know that even stars and family of stars have died because of this being overlooked or misdiagnosed, like in the case of John Travoltas son, diagnosed with seizures, the seizures were actually due to the long qt syndrome, the heart starves the brain of blood and oxygen, thus causing syncope and / or seizures, he could still be alive today, so could maruice Gibbs, Witney Huston, and many others that they know of. Then there is many, many, others that, even in death they did not discover that long qt is what killed them, because by the time they looked it was to late to tell and genetic testing was not suggested by the cardiologist, or the insurance company said no, and as a result if that the families never even knew it was an option, leading to more death in the family that could have been prevented. For instance I have had these symptoms all my life, and my grandmother and my uncle both died mysteriously in there 40's of sudden cardiac arrest that came out of nowhere, with no blockages in the heart, there was never any explanation or warning given, I had to do all my own research, go on forums, and my daughter, (her life unknowingly at risk) had to suffer alot, before the doctors started letting us in on the long qt mystery, and finally giving way to her having genetic testing, later will come me, then my other children. I wonder if long qt is not normally mentioned or considered by doctors due to the outrageously overpriced cost of the testing. a price that the largest amount of Americans can not afford to pay and most insurance companies will not. I don't like this thought one bit at all and I don't 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 may be, I understand, but I am not giving up!! Any one who died of a seizure related or heart related condition, or has any of these symptoms should be evaluated through genetic testing for long qt syndrome, because often...... very often the first symptom is sudden cardiac death, and genetic testing is the only thing that would have found the long qt syndrome, it hides and does not always show up on an ekg or other tests. If you could please do me a favor, other then offering encouraging words to Skye, who now sits at home worried of what might come, also Google long qt syndrome and pass the word along about it to whoever you know.... you might just save a life.

Sad Gypsy


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