Comments on: Long QT Type 3 Can Kiss My Ass

By: Lisa Worley

Lisa Worley — Sun, 08 Jan 2012 04:34:12 +0000

This is a follow up to those of you who are arguing with your insurance carrier over genetic testing. It is very expensive. Our electrophysiologist used a genetic testing company called Gen DX. This company will not charge you more than $100.00 per person to test for the gene. We held off for two years with genetic testing because it was so expensive, than our electrophysiologist told us about Gen DX.

By: Lisa Worley

Lisa Worley — Sun, 08 Jan 2012 04:29:07 +0000

I am so very sorry for your loss. This is a troubling and hard syndrome to figure out. There are actually 17 types of Long QT. My daughter was diagnosed with Long QT 3 about three years ago. She had complained about waking up in the middle of the night with a racing heart for about six months before my husband and I took her to the cardiologist. (You just don’t think at sixteen years of age that there is anything seriously wrong with your child) We were very fortunate my daughters LQT 3 was caught with the help of an event monitor which prompted the electrophysiologist to promptly (that day) implant an ICD. She now takes a small dose of a beta blocker and sees her electrophysiologist a few times a year. He is an awesome Doctor. I would highly recommend him…..in fact we found him by way of several recommendations as being one of the top doctors in his field here in Chicago. My husband and I are very thankful we found him and he saved our daughter. We also did genetic testing and my husband carries the gene but shows no symptoms which I guess can happen frequently. My advice to anyone who knows their child carries this mutated gene would be the stop at nothing to have an ICD implanted. This is the only way to treat LQT. My deepest heartfelt condolences go out to any parent who has lost a child to this syndrome.

By: DLW

DLW — Wed, 07 Dec 2011 02:55:58 +0000

The waiting is excruciating… my son too diagnosed with Long QT and after fighting through the insurance appeals process are awaiting results from the genetic testing to discover what type of long QT my 12 year old son has. We should know by Christmas…. He too thought he was going to follow in his dad footsteps and play professional baseball… we have been through a divorce, an unexpected move, ADHD diagnosis and now this diagnosis all within the last year…. very overwhelming for a little guy. His strength to deal with the unknown has been inspiring. He takes his beta blocker every morning and checks in with the PE teacher to see if he can join in for anything for PE that week. It is gut wrenching to know after results are back the testing starts for the rest of the family including his 8 year old sister. I pray every day we will all find the strength to cope. Be still my soul…….and all of your souls…

By: anita

anita — Sat, 26 Nov 2011 16:06:01 +0000

We are heading to the Mayo Clinic in Minnesota next month to search for answers and get opinions to make serious decisions for myself and 3 sons all diagnosed with Long QT 3. we have genetically been tested positive. i never sleep. i lost all quality of life with this news. I need answers. I’m so sorry for your loss, I cannot even imagine the frustration you live with every single day. I will keep you in our prayers and thoughts. I hope I can learn more and get answers that will help create awareness and support. Take good care!!

By: Wally

Wally — Fri, 16 Sep 2011 17:31:37 +0000

Hi everyone im 27 years old and my genetic test came positive for all 3 types of LQT . I am planning on having the aicd Implant within a month. For those of u with kids my age , feel free to have them ask me any questions regarding this . At least now this awareness can save lives and prevent future mishaps . Sucks having a pacemaker at 27.

By: Carolyn

Carolyn — Tue, 08 Jun 2010 23:56:50 +0000

I can’t believe it took me so long to stumble across your site, Steve, but boy, am I glad I did. My heart goes out to all of you who are living with this, either as a patient or a family member, and especially to those who have lost a loved one to this insidious syndrome. I am a long QT patient who was first diagnosed sixteen years ago. I used to live in fear for my own safety because of LQTS, and now worry every day about my children. My seven year-old identical twin sons were recently diagnosed, and I have been through six months, several Drs’ testimony on my behalf, and five levels of appeals, and am still unable to get insurance approval for genetic testing on me, because I am the known carrier, so I can get a definitive answer on my third son, my siblings, and their children. I also went through a gut-wrenching ordeal, literally begging and reduced to tears at public meetings, to try to get our local school department, with a $55m budget, to make a $1,000 expenditure to place an external defibrillator in their school. Humiliating, and excruciatingly dehumanizing to have to beg them to acknowledge that your child’s life is worth $1,000. I am in tears now as I write this, for what I KNOW all of you are going through. It is impossible, at least for me, to look at my children and find any level of acceptance of it at all. I am trying to navigate a fine line between letting them understand that they have this condition, the symptoms, and when they need to get help right away, without instilling in them the fear and anxiety that I know first hand that comes along with it as a patient. I mean, they were both convinced they were going to play for the Red Sox one day, and I had to tell them they can’t even play little league, because their doctor said no organized sports. Without exception, literally the worst thing I’ve ever had to do. I’m with you, Notorious Dad: this BITES. I wish I had the answers, but I am deeply grateful and thank all you for letting me know I’m not alone.

By: Kat

Kat — Sat, 27 Mar 2010 04:06:50 +0000

Steve, our family will be praying for yours. I have so feared the worse, and have learned to hand it over to God, because I would have gone crazy worrying. Our Son has Long QT 1 and 2, He was Diagnosed at the age of 18 he is now 20 yrs. He has had a VERY difficult time with accepting his condition, and I have felt and sometimes still feel he lives on the edge. He was dead for 20 minutes, and in a coma for 3 days. The first year after and ICD was placed, we abslolutly went crazy. He in my opinion went on a suicidal fit, he had totally lost control of himself. After, many downs in his life than ups, he has slowly come to realize that he was going to live, however, I stil dont think he takes his meds. He was also diagnosed with ADHD at the age of three, and Narcolepsy at the age of 19. We just recently found out he might be a father of a child, so we are now in the process of DNA testing, and court hearings. I do hope you can cope with this in your family, as we have had too. Since we found out almost three years ago, I have aged, and gone gray. Jesse is our last child out of seven. I am tired, and I can’t get any help in getting me tested, and my other boys are acting like they don’t have it! I am just tired of fighting. Sometimes I know I will be getting a call on day, and the call will not be what I want to hear. God bless you, ans as you I HATE THIS SYNDROME, I hate it will my all!

Kat

By: Steve

Steve — Thu, 04 Jun 2009 05:13:28 +0000

A quick update. Sam and Lauren went for their genetic testing today, and I will go next week. The geneticist informed Lauren that Jack’s specific form of Long QT Type 3 is a mutation that the genetics testing lab has never discovered before, making this situation even harder than it already is to accept. Today it’s been two months since Jack passed away, and the news just doesn’t get any easier.

By: Dick S.

Dick S. — Fri, 29 May 2009 21:36:37 +0000

Steve,
I, too, am a dad whose 15 year old son died of previously undiagnosed Long Q-T. Both his brother and sister were subsequently diagnosed with LQTS and are treated with medication and ICD’s. There are no adequate words to express the depth of the pain when you lose a child. The SADS Foundation, http://www.sads.org provided the most complete and most helpful information as my family struggled to deal with our family’s death and diagnosis. Over the next several months, I trust that you will discover many resources for your family as you try to accommodate LQT. In some communities there are support groups for parents who have lost a child from Sudden Cardiac Death. “Compassionate Friends” is a national network of support for families whose chilld has died. If I can personally help you or your family with a conversation about Long Q – T, Joanne at the SADS Foundation can provide you with my contact info. Please accept my sincere sympathy on Jack’s tragic and untimely death.

By: Renee W

Renee W — Thu, 28 May 2009 22:12:29 +0000

I found your post in the same way that the others who commented found you. I am so very sorry to hear of your loss. Two of my three children have Long QT Syndrome. We did not know it ran in the family until I was pregnant with our third child, who was subsequently diagnosed with it at three days old. My thoughts are with your family in your grief, and in the uncertainty you feel now as the rest of your family is tested. Take care, Renee