LQT Numbers- What do they mean?

• By baloney
• Posted September 30, 2009 at 1:12 pm
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Stop blaming yourself for this diagnosis. Its not your fault . Your children are being immature and mean to say they will not forgive you . Its not your fault . They can't blame you if they don't like their eye color either. You need to tell them to start acting responsibly and get tested . It is for their own benifit . they can take medication vs no medication and the possibility of death. lets face it "the devil you know is better than the devil you don't know . This is no ones fault . You are the unfortunate one because you have been diagnosed with it . Start tommorrow with a new attitude . Everything that goes wrong in life is not your fault . BALONEY

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• By Brianne
• Posted October 1, 2009 at 11:29 am
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Hi Curious Dee,
I'm sorry to hear that you are having to deal with the possibility of having LQTS. It is something that you should take very seriously! While I'm sure some people may live full lives never knowing that they have LQTS, many others die. Unfortunately the most serious side effect of long qt is death. I was living with LQTS without it being diagnosed when my heart quit beating. I was in the hospital being treated for something completely unrelated when my cardiac arrest happened and if I hadn't been there at that time I'm pretty sure I wouldn't be alive today.

Mayoclinic definition - Long QT syndrome (LQTS) is a heart rhythm disorder that can potentially cause fast, chaotic heartbeats. The rapid heartbeats, caused by changes in the part of your heart that causes it to beat, may lead to fainting. In some cases, your heart's rhythm may beat so erratically that it can cause sudden death.
You can be born with a genetic mutation that puts you at risk of long QT syndrome. In addition, more than 50 medications, many of them common, may cause long QT syndrome. Medical conditions, such as congenital heart defects, also may cause long QT syndrome.
Long QT syndrome is treatable. You may need to limit your physical activity, avoid certain medications that can cause the condition or take medications to prevent a chaotic heart rhythm (arrhythmia). Some people with long QT syndrome also need an implantable device to control the heart's rhythm and to prevent against sudden death.

It can all seem scary and overwhelming at times but if you (and any of your children) do have LQTS at least you know and can take the proper steps to have a happy long life. Your family may be angry but I'm sure most of their anger stems from not understanding whats really happening. I'm sure they are feeling even more confused than you are.
Also, some medications can actually make your LQTS worse and aren't safe to take. If your other doctors genuinely care about you, they should be thrilled that someone discovered your LQTS and is going to help make the necessary possibly life saving choices for you. Visit http://longqt.org/ and click on "For Patients" and then "For Patients" again and then "Medications to avoid" for the complete list. Best of luck to you and your family! Being a mom of a 4yr old daughter I understand how you must feel and while its ok to have a pity party in private occasionally :o) Try to remain strong and know that it isn't something that you could have prevented. Let me know how you guys are doing!!
Hugs Brianne

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• By CuriousDee
• Posted October 3, 2009 at 9:53 pm
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We are getting a little more used to things although, it is still stressful. I want you to understand my kids are relatively young.

The oldest just turned 18 and has an unconfirmed lymphatic disease inherited from her father (undiagnosed officially because of the invasive nature of the tests, they want to wait until she is 21) She has been sick most of her life.

My middle child, who is the one who is having the most problem with diagnosis has spent her entire life trainig for a career she has been reccomended to consider giving up. I know and so does she that most people don't understand but she has been trainging to dance since she was 3 and since she was 9 or 10 has been spending more time training and performing than most people work at a "real" job. She has already been teaching for 2 years as well as taking her own classes, participating in a company and performing with her studio.

These 2 kids just spent 2 years taking care of Grandparent who died of a heart disease. They drive me almost every where. They are helping out finicially and have been for a while. They help raise a younger sibling who was pretty much a baby when they started taking care of him because of my health. They also do school work and volunteer at multiple organizations, mostly helping children or handicapped persons.

Yes, they are being inmature, but I guess I understand that it seems unfair. I am not complaining, but with several other serious dignosis under my belt, my first reaction was, "What? Why me?".

We are trying to move to the we are lucky to know and be able to know because they say most people my age are not picked up unless they have a severe episode. We are looking into CPR and correct responses and letting people know how to respond to a life theatening episode.

The only relatives I really don't understand are my siblings, mother and aunts and uncles, several of whom work in the medical communtity. They are the ones who really bother me because they don't have the excuse of being children faced with life altering decisions.

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• By CuriousDee
• Posted October 3, 2009 at 10:33 pm
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Brianne,
It is really nice to hear from someone who has LQT. I know I am lucky to find out without a life threatening episode. I am sorry you had to find out that way.

We are trying now to get our insurance to pay for the expensive version of the genetic testing for me since they know that I have the syndrome. They said it would help in the testing and treatment of my children and other family members.

I think that part of what is really hard is that my children were sent to a Pediatric Cardiac Arythmilogist very quickly after I was confirmed with a second test by a cardiologist. He was very up front with us and them, they range from 11 to 18, about the fact that our family history is very consistent with lgt, and their personal histories were also consistent with lqt. They have each had blacking out, near drowning or other "heart symptoms". He was also upfront with them that they had at least a 50/50 chance of lgt and that they were very lucky because he usually started testing families after there was at least one, but often multiple sudden deaths among children in a family. He was very gentle and kind, but also very insistent that they needed to be very aware of symptoms and dangers, appropriate treatment and that they had to start avoid some of the most obvious dangers. He immediately arranged for an event monitor for my daughter and it has been consistently going off without her setting it off, so we are assuming it is picking up arythmias when she feels no symptomes.

One of the things my youngest son asked and was hard for me was "Is this really forever? I always have to watch? Can it really kill me?" Being a Mom your self you must know how hard it is to say "yes". We are the protectors.

I would like to ask you what you personally felt were the best things you asked or learned. I have been looking at the Mayo Clinic site as well as others. I try to ask the right questions at the doctor's offfices, but we do still feel a little like we were thrown off a cliff with a parachute and no instructions.

Are there books out there that cover lqt that you know of? I have so many questions and have found so little in really understandable answers.

If it is not intrusive to ask, has your daugter been tested? I wonder sometimes if the "adult" questions I ask are not the best ones for my children.

Thank you,
Dee

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