| Author | Message | ||
     Malisa |
My nine year old son is having problems getting dizzy,his heart races, and he gets really flushed when this happens. He also tires quickly. So far this has happened three time in the last month. Nothing ever before this. We have taken him to two pediatricians. The first one had an ecg run, blood tests and all that kind of good stuff. His blood tests came back normal, but she saw something on his ecg. She referred him to a ped. cardiologist. We were not very happy with how she just did all of this stuff with no answer on what she thought it may be. So we got a second opinion with anoth pediatrician. She also did the ecg and blood tests. (we did find out that he's had mono, we had no idea that he had) She informed us that she saw long qt syndrome, but she wanted him to see the ped. cardiologist. He has never passed out or turned white. I am wondering if anyone else can share some more information about symptoms other than the passing out. I am really scared and upset: he has always been a healthy child, hardly ever getting sick, and this surprises me. Any additional information would be greatly appreciated. | ||
| maryL |
This is interesting. My 11 yo son is similar--I've just figured he was a whiner (also gets dizzy, thinks he's going to vomit or pass out, gets clammy (but I never checked his heart rate at those times). Long Qt is in my family, but until last week, I had passed all tests with negatives, and so had my children. I saw a new electrophysiologist last week in CA (Kaiser in Los Angeles) and he thinks I do indeed have it, and so do two of my 3 children, including my whiner son. I was just wondering today if his "whiner" episodes like you've described could really be Long QT. The doctor asked me to get a second opinion, which I am going to do. But it is unnerving. In the past I've just attributed it to a lack of fuel--when he's hungry, he's worthless. So, I'm not really giving you an answer, but I'm sort of commiserating that I'm in the same boat. I'll try to remember to come back and see if you've posted a response. | ||
| Carolyn Garvitch |
Malisa My son is now 11. He had been complaining from feeling dizzy since he was 9. He often didn't seem to be able to do the same level of activity as he used to, and sometimes just felt off! We always ignored him and just encouraged him to keep going, thinking it was stress or worry. However when he was 10 he was racing in a BMX race and passed out. He was diagnosed with LQT. If the Doc's think he has Long QT, it is best to listen and continue with the tests. We realise that we had a lucky escape with our son. He is now on beta blockers and seems to be doing very well. Carolyn | ||
| John Thomas |
Hi, I'm a 46yo male who has finally been diagnosed with LQTS. I started fainting at age seven, stopped at age 16 when I finally learned how to recognize and stop fainting episodes. I've fainted probably 40 times, all from exercise or other physical exertion. I developed panic disorder with agoraphobia which caused me to drop out of high-school and become home-bound for several years. I've spent the last 10 years living on social security disability income due to my panic disorder. I recently got my MA in counseling and am in my first job since '94. I'm curious as to how many people have been diagnosed late in life who have developed an anxiety disorder. After many EKGs from cardiologists, emergency room trips, and GPs, I gave it one last shot so I could feel more energetic at work. That's when it was confirmed. A tilt table test double confirmed it. Personally, I'm hoping that I'll have a pacemaker and ICD implanted since I never want to be symptomatic again of anxiety, faintness, shortness of breath walking up one flight of steps, etc. I think I must be one of the lucky ones who didn't die in childhood. I've notified my family so they can all get tested but no one else has a history of unexplained fainting. When my mother was in her first trimester with me, her doctor put her on amphetamines or whatever the 50's version of diet pills were. I'm wondering if I developed LQTS as a result of that or the LQTS genes got mutated in-vivo. Since the 50s, drugs and pregnancy are so much more carefully monitored. Anyway, that's my story - It's a bitter-sweet feeling to finally know that I wasn't a "sissy" or hypochondriac after all but that it took so long to diagnose. I'm looking forward to a brand new life. If anyone knows of any support groups in my area (Northern Virginia) or online, please email me. I'd be very grateful. Thanks! John Thomas john@cure.org | ||
| kerry rudland |
Hi John, I was diagnosed with a panic disorder at the age of 16, I began having dizzy and blackout spells and eventually became agoraphobic, i am now 26 and only recently when my mum died suddenly was i diagnosed with LQTS, How did you overcome your agoraphobia and panic symptoms? I Am now on bisoprolol but seem to feel even worse with panic symptoms, i feel like i am constantly o edge of a panic attack all the time, i have terrible mood swings and do cry a lot since starting them, Does anybody els have these problems on beta-blockers? I never got fitted with a pace maker or an ICD as i was told i am not at high enough risk!!!! ??? Although i have spent years of passing out and funny heart rythms. I do not trust my beta-blocker to keep me 100% safe but what else can i do, i have been for a second opinion and have the best team in London on my case, so what else are my options. anybody who would like a chat please feel free to e-mail me or if you have any answers to my questions i would love to hear from you. Kerry. PS i also have a 4 year old son that seems to be overly whiny,,, but nobody has tested my children yet, and it has now been 10 months since my mum died and i got my diagnoses.. | ||
| Bionic Roadrunner |
John, you should consult www.sadsuk.org They have a lot of info on LQTS and a support group I believe. It is very important that your children should be tested as soon as possible. Good luck! | ||
| Bionic Roadrunner |
Sorry, I mixed up the names here: my post was meant for Kerry since he lives in the UK. | ||
| A Lenox |
Hello. My 12 years old daughter was diagnosed with LQT yesterday. And I am just devastated! Everyone I've told seems to think it's comforting to tell me that "at least she just passed out." But now I'm holding my breath thinking that this could be the end and my daughter will die in her sleep. All the literature seems dismal and not filled with much hope. Is this a death sentence for my child. Should I sleep in the room with her nightly to make sure she is still breathing. If she does pass out, can she be revived or is death all that is left. My heart is breaking and I'm pulling my hair out...literally! It's all so new and shocking that I need some words of encouragement and hope. Can I keep my baby alive? | ||
| Bionic roadrunner |
Hello, I am so sorry about your daughter, but do not despair. The most important thing is that she must be treated right away with beta-blockers which will control the arrhythmias. This is the first treatment of choice. She should not have any phone or alarm clock in her bedroom as a startle could trigger an episode. She should not particiapte in competitive sports and should avoid swimming by herself as swimming can be a trigger too. Try to inform yourself as much you can on the syndrome. This site is a good source and also www.sads.com. Make sure the cardiologist you see is an electophysiologist as they specialize in the electrical system of the heart. You should be checked too as well as your husband to see if it is the congenital form,. Also, if you have other children, have them tested. A regular EKG does not always show a prolonged QT, a stress test is better. There are many people out there who live very normal life with LQTS. I understand your worries and I am sending her my best wishes. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
If she is well treated (betablockers) the risk is very low (unfortunately not 0). In that case I wouldnt worry to much, let her take her betablockers and live her life. On betablockers traffic, other diseases and other human beings are a much more dangerous for life than her LQTS. | ||
| Bionic roadrunner |
To A. Lenox, Sorry, I gave you the wrong address. It is www.sads.org | ||
| Lisa |
Please don't find out the hard way. My son was 14 and was playing football when he went into cardiac arrest. Never been sick, other than the ordinary things. He was dead for 12 minutes. The medic revived him after the 4th shock. He was in intensive care for 10 days. AT first his brain was swelling. He was on a ventillator for 24 hours. When he woke up he had memory loss. You don't know how it feels for your son to ask u "HOw many children do u have? A mothers nightmare. He got better, and we left. The next week we were on our way to TCH for an ICD. The doctors didn't eant to take a chance. He was not happy about it, because he was an advid sportman. He has been on a Beta blocker witht he ICD for 2 years. He has no episodes or anything. He does have auditory memory loss. That is something that we just deal with. I just thank god that he is here. He is 16, 6'1 and 290. He doesn't stop either. He is involved in hunting and all. | ||
| A Lenox |
THANK YOU FOR THE WORDS OF ENCOURAGEMENT!!! We are taking our daughter to the Cardiologist next Thursday. Can you believe that was the earliest appointment we could get! Everyone seems so nonchalant about the whole thing, but my husband and I know how dangerous this is and we are the ones pacing the floors at night...she could die!!! We're trying not to tell her what's going on just yet because we don't want to frighten her and have her worrying, but we are being very protective of her activity. She plays around with her younger sister and even that has me on edge. I ask her like every 5 minutes "how do you feel?" or "Are you OK?" But I can't help it. Does anyone have any questions that I can put together to ask the Cardiologist? Knowledge for me is key to feeling more secure and strong. Should I ask for a heart monitor for when she is sleeping? My husband thinks I'm overreacting, but I don't want to leave anything to chance. | ||
| Bionic Roadrunner |
To A Lenox, Your daughter MUST be on beta blockers NOW! Who ever diagnosed her with LQTS should and must absolutely put her on medicine right away, not Thursday. Beta blocklers, as Dr Janters told you, will protect her very well. Make sure that her cardiologist knows enough about LQTS. Electrophysiologist are usually more knowledgeable. To inform yourself, consult the sites I mention earlier www.sads.org and this very site. They are some of the best as far as info. Do you live in the States? If possible, come to the SADS (Sudden Arrhythmia Death Syndrome) Conference in Atlanta on October 24 and 25. You will be able to talk to doctors and parents of children like yours. Whatever you do, DO NOT LET HER WITHOUT ANY BETABLOCKERS UNTIL THURSDAY. Call the doctor you saw and ask for a prescription, even on the week-end. Best wishes to your daughter and let us know how she is doing. | ||
| Bionic Roadrunner |
To A Lenox again, If you live in the States, get on www.sads.org and click on the little map of the States on top of the page. It will give you the name and numbers of people who represent SADS in the different States. There might be one in your state or an adjacent States. Go ahead and call them. Good luck! | ||
| Cindy Bonasse |
A Lenox Another good site for you to check out is www.longqt.org You can email them if you like from their site. They have helped me alot with my quest to get things done concerning my own LQT and the worry of getting my kids tested and cared for. LQTS is scarey I know first hand but knowledge and medications are a step in the right direction. If you care to feel free to email me directly. Talking with someone who understands helps. Get your daughter on beta blockers asap and get you, your husband, and any other children tested as soon as possible. Take Care, Cindy | ||
| Lisa |
If he is passing out,and dizzy why take the chance. My son never told me anything to that sort. When he was 14 he went into cardiac arrest on the football field, and was dead for 12 minutes. He revived and life flighted to ICU. When we left the hospital we still had no answers. The next week at a check up at his ped cardiologist, he was still not satisfied and consulted with a doctor from TCH, we were on our way to Houston in the next thirty minutes without any clothes. He was there for observation for a few days and then he had an ICD implanted. | ||
| kate walsh |
My son, age 16 and daughter, age 13 have just been diagnosed after many months of testing. Their original ECG were thought to have normal intervals, but their stress tests and holter monitors have showed abnormalties. They are both asymtomatic. Their cardiologist wants to put them on 160 mg of beta blocker and another 60 mg in pm for my son. This seems excessive to me and I don't want to subject them to the side effects which seem extreme. Is this normal dosing? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It depends of their weight and what kind of betablocker the doctor had chosen. If the diagnosis is sure it seems reasonable to treat your kids. | ||
| Kim J |
After a relative died from LQTS, I went to my doctor to be screened. The EKG showed a prolonged QTc interval so I was referred to an electrophysiologist (EP). The EP took another EKG (which showed the same results), immediately put me on Beta blockers, and recommended an ICD. He said no other tests such as the Holter monitor, treadmill stress test or epinephrine stress test were necessary since it was obvious from my EKG that I had a prolonged QT. After a week of taking 25mg of Atenolol, I had a follow up visit with the EP. My QTc had dropped this time from 489 to 440. I questioned the necessity of an ICD, saying I'd read 90% could be managed by Beta blockers alone, the relative who'd died was a distant one, and I'd only had 1 episode of syncope in the past 8 years. He said that it was my choice although he leaned towards performing the procedure, and agreed to stay with Beta blockers only for 3 months until our next follow up. I'm somewhat concerned that he doesn't feel it's necessary to perform any other tests. Is it reasonable not to do any further testing if the EKG is obvious? And is only 25 mg of Atenolol a sufficiently high enough dosage? I'm having doubts about this doctor, but I don't know if I'm overreacting or if my concerns are valid. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
There only one well-documented test and that is the ECG. Many LQTS doctors perform also treadmill tests and Holter but in my opinion (and some would agree with me) they are not well documented (but in some cases can give important information. Genetic testing could be performed, if it is positive you can be almost sure that you have Long QT syndrome, however the value of a negative test is low. Only 60-80% of all Long QT syndrome patients can be identified, that means that 20-40% of all Long QT syndrome patients have a negative test and still the disease. I dont know you full story, i wonder why your QT interval dropped on betablocker treatment since normally betablockers dont change the QT interval. The dose of betablockers seems low but I normally starts low and then increase the dose. For an adult 50-100 mg atenolol would be normal but it depends of the pulse. Ask the doctor how many LQTS patients he has, to get an idea of his experience with the disease, and eventually try to get a second opinion from one of your regions experts in LQTS. The discussion of an ICD or not is always difficult. If you have a cardiac arrest on betablocker therapy, your family would hate your doctor for not to have implanted one (I have tried it once). However an ICD can actually kill you too (complications, inappropiate shocks changing the rhythm from not dangerous to cardiac arrest). In my country we only implant ICDs if 1. the patient had an cardiac arrest irrespective of betablocker treatment or not. Recurring syncopes on betablockers or adverse reactions to betablockers. However to give you a sufficient answer, you have to the full information and ECGs, which can only be done in your own country | ||
| Alexa Pasc |
Baby with long QT: How bad is it? Hello! Please help! My 2-month old son was just diagnosed. Several ECG's taken 4 days apart showed QT/QTc as follows: 352/523; 360/511; 354/506; 368/534;336/496; 342/493. He was put on propranol immediately. Otherwise, he is assymptomatic: healthy, no long QT detected in my husband or me, neither in my 5 year old daughter. I am so scared and shoked. I know I have much to learn...Please tell me how bad is his QT? And does any one know how such young babies tolerate beta blockers? What should I do to allow him to have a normal chilhood? | ||
| SONIA DYKES |
HI ALEXA I,M SO SORRY TO HEAR ABOUT YOUR LITTLE ONE.MY SON ALSO HAS LQT.HE IS 2YRS OLD.MYSELF AND HIS DAD HAVE ALSO BEEN CHECKED AND WE HAVE BEEN TOLD WE,RE FINE.TYRONE,S LQT WASN,T DETECTED UNTIL SEPTEMBER WHEN UNFORTANTLEY HE HAD A CARDIAC ARREST AND HAS NOW BEEN LEFT BRAIN DAMAGED.TY IS ON ANTENALOL AND WE ARE WAITING TO FIND OUT ABOUT A DEFIB OR PACEMAKER.HE RESPONES WELL TO THE BETEBLOCKERS.I CANT ANSWER ABOUT A NORMAL CHILDHOOD AS THIS HAS BEEN TAKEN AWAY FROM HIM BUT IF YOUR WORRIED ABOUT HIM WHILE HES ASLEEP ASK IF YOU CAN HAVE A APNIER MONITOR.I DONT KNOW ABOUT NUMBERS BUT IF YOU KNOW WAT THEY MEAN PLEASE COULD YOU EXPLAIN THEM TO ME AS MY CARDIOLOGIST HAS NEVER SHOWN ME ANYTHING LIKE THAT BEFORE.THIS IS A RARE HEART CONDITION FROM WAT I,VE HEARD.IT,S NOT DIGINOSED EASILY.YOUR DAUGHTER SHOULD ALSO GO FOR REGULAR CHECK UPS TO.WELL ALEXA I HOPE I,VE HELPED YOU A LITTLE BIT.BUT I,M STILL LEARNING ABOUT THIS MYSELF.BY THE WAY WHERE ABOUTS ARE YOU FROM.I,M FROM WILSHIRE,IN ENGLAND.HOPE TO SPEAK WITH YOU AGAIN.OH BY THE WAY HAVE U BEEN ON THE LONGQT SUPPORT GROUP SITE. | ||
| Alexa Pasc |
Hi Sonia, thanks for your note and for sharing your story. I am so sorry for what happened to your son. I hope they can find a device that would work well for him. The numbers I gave you are the ones for the QT wave which is prolonged in LQTS patients. The first number is the QT of the patient, the second is the QT adjusted statistically (QT corrected, or QTc). From my crash self-education, the higher the QTc, the higher the risk of a cardiac event. You can find a newly published risk assessment table on this site at: http://www.qtsyndrome.ch/risk.html I am in Florida, USA. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Dear Alexa The risk for you son is low as long as he take/you give him the betablockers. Normally betablockers are well tolerated by children. Please note that the risk table mentioned in the above message refers to the risk in untreated patients, and can not be used for patients on betablockers (which in my opinion would had been much more interesting). | ||
| Alexa |
What is a proper diagnosis? Hello, I have 3 questions concerning reliable ways to diagnoze LQTS and possible interfering or masking factors: My 2-month baby was put on beta blockers based only on the computer ECG numbers (352/523; 360/511; 354/506; 368/534;336/496; 342/493) taken once and then retaken a week later. During both ECG's he was hospitalized twice (for two days each time) for a virus which wasn't identified but was something like common cold or another bening virus. At the times of the ECG's, he had lost fluids due to fever (39 C), was under stress due to numerous painful procedures (intravenous blood drawing, cathetarization for sterile usine, and a lumbal puntire to rule out meningitus). He was also on antibiotics (ampicillin for 2 days, then rocephin for another 2 days) and had Tylenol. 1) I am wondering if his overal situation could have induced a high QTc? He has been asymptomatic and neither the parents nor his 5 year old sister have abnormal ECG's - we just checked. Also, we do not have a family history of fainting or sudden unexplained deaths of children or adults in the family histroy going back 3 generations. However, he did have his electrolytic ballance checked just before they gave him the beta-blocker and it was normal - this was 2 days after the second fever episode. 2) I am wondering if any lab will take his blood for genetic testing given that there is no other family member to compare? 3) What do I need to do to make sure his situation is accurately diagnosed without being masked by other conditons. Also, if I look for a second opinion and get a new ECG on him, wouldn't the data be skewed by the effect of the propranolol on the heart? Thank you! Alexa | ||
| Alexa |
What is a proper diagnosis? Hello, I have 3 questions concerning reliable ways to diagnoze LQTS and possible interfering or masking factors: My 2-month baby was put on beta blockers based only on the computer ECG numbers (352/523; 360/511; 354/506; 368/534;336/496; 342/493) taken once and then retaken a week later. During both ECG's he was hospitalized twice (for two days each time) for a virus which wasn't identified but was something like common cold or another bening virus. At the times of the ECG's, he had lost fluids due to fever (39 C), was under stress due to numerous painful procedures (intravenous blood drawing, cathetarization for sterile usine, and a lumbal puntire to rule out meningitus). He was also on antibiotics (ampicillin for 2 days, then rocephin for another 2 days) and had Tylenol. 1) I am wondering if his overal situation could have induced a high QTc? He has been asymptomatic and neither the parents nor his 5 year old sister have abnormal ECG's - we just checked. Also, we do not have a family history of fainting or sudden unexplained deaths of children or adults in the family histroy going back 3 generations. However, he did have his electrolytic ballance checked just before they gave him the beta-blocker and it was normal - this was 2 days after the second fever episode. 2) I am wondering if any lab will take his blood for genetic testing given that there is no other family member to compare? 3) What do I need to do to make sure his situation is accurately diagnosed without being masked by other conditons. Also, if I look for a second opinion and get a new ECG on him, wouldn't the data be skewed by the effect of the propranolol on the heart? Thank you! Alexa | ||
| Patty Kisert |
My daughter was having symptoms of lifelessnesswhen it was discovered that her heart rate was 300beats per minute at the age of 3. Many episodes later she was diagnosed with Wolf Parkinson White syndrome and an alternate pathway was found going from the right atrium into the rignt ventricle and bypassing the atrioventricular node or th enatural pacemaker. It was a congenital disease that I had passed on to her and when it was discovered in me I was devastated. Hers was much more lifethreatning. After years of beta blockers she finally underwent radio frequency ablation and the aberrant pathway was burned and destroyed. She now has a wonderfully normal life now. The WPW syndrome has a definite pattern in the QT wave of an EKG. It is slurred due to the escaping electrical current from its normal pathway. As the current goes down the extra pathway, it beats the normal current into the ventricle and causes an extra heartbeat to be generated. This causes a short circuit and allows the heart to go into prolonged tachycardia. I myself have underwent the ablation but I know that this condition was what took the life of my grandfather who died of a massive heart attack. The oloder you get the less capable your heart becomes of handling a rapid heart rate due to hardening of the arteries. I don't know if this information will help anyone but perhaps this diagnosis might fit someone else. My daughter had a sinus infection and a high temperature when the 300 beat per minute heartbeat was discovered. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Wolf Parkinson Wolf Syndrome is a different disease to Long QT syndrome. They have in common that they during special circumstances can cause sudden death, they are (in some cases for WPW) inherited, and they can have arrhythmias. The difference is that Long QT is a promary electrical disorder where the problems are within every single cell, and WPW is a more structural disease where the problem is an extra pathway between the atria and the ventricles. The special pattern in the QRS complex is an extra deltawave identifying the area activated by the extra pathway, which including a short PQ interval makes it normally easier to diagnose than Long QT syndrome. | ||
| Angel |
Hi..I probably shouldnt be here yet but my half brother has had 3 deaths in his family, ..They are being investigated for Long QT and its been diagnosed in a few members. I am quite distant and un-medical. However its believed that our mother was a carrier, if thats the correct term. I believe there were many sudden deaths back in the generations. I am generally healthy but now suffer from quite bad giddyness at points, my hearing is also damaged genetically I've been told. When i was young i had many faint type episodes but seem to have out grown them. In short do you think its worth getting looked at as otherwise i am well. I am also 44 so i thought i was too old to be affected? Please forgive me if I'm being oversimple, Thank you | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
In short yes! If your mother was a carrier your risk is 50% for havibg Long QT syndrome. Since you have fainting spells I would guess the risk is a lot higher. Contact your doctor and let hime take your ECG | ||
| jessica |
hi could somebody pleaseshare their experience of beta blockade and asthma in LQT, my daughter aged 14 has a normal ecg, prefainted in PE last year, fainted again this year in the shower ..cold h20 on her face..and has been diaganosed LQT following an exercise ecg. We are an LQT family....however she has bad asthma, always on preventer therapy and sometimes needs nebulising for extra wheeziness. no treatment, cos of her asthma yet. | ||
| victoria brown |
Jessica do you know what type you have for long QT. Because Type 3 does not do well with beta blockers is what I am finding out. I have a pacemaker defib but my sister is on beta blockers and she is having alot of trouble but we don't know for sure if she has long QT either. I have not been told of what type we have. I think Type 3 since my daughter did die in her sleep and I almost did one year after my daughter. Iwas misdiagnosed for elilepsy for 20 years. Please email me if you wish | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Many asthmatics tolerates betablockers for example bucindolol (Sales name vary with country). If your daughter has LQTS and faints either betablocker or an ICD should be considered | ||
| Lisa |
I am hoping that someone might be able to help me out with some questions I have concerning my daughter. Two weeks ago my daughter who just turned 15 were shopping and she had a fainting episode. She had a very gray tone to her skin. I took her to the ER and they did do an EKG which showed a borderline prolonged QT wave and the ER Dr. said it was nothing to worry about and if it happens again to get a cardio workup. (They didn't see her until 4 hours after the event)I didn't feel comfortable with this and took her to our family physician the next day. Our family physician has the prolonged Q T syndrome in his family and he didn't feel comfortable with this and set up my daughter to see a pediatric cardiologist the following day. The cardiologist also made me feel like it was nothing to worry about and did do an echo which was normal and he set her up with a holter moniter. I just learned today that her holter did not show the prolonged qt but that there were over 4000 episodes of pvc's. First question is: Are pvc's common with prolonged qt syndrome? She did go through a stress test today and the dr. said her q t wave showed as corrected and her pvc's went away when her heart rate went up with the increased exercise and again said this was nothing to be extremely concerned about but felt a cariac MRI was warranted to rule out any other type of abnormality. At the end of the stress test she started to have symptoms where the ringing was starting in her ears just like right before she fainted. I am very concerned about her health and still don't have answer as to what might be happening with her. Thanks for any help! | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
PVC are not commonly associated with Long QT. The is a high risk that your daugther is healthy (fortunately) but your pediatric cardiologist is trying to rule out various diseases. But common fainting is hitting 10% of the healthy population, fortunately it is benign. Your pediatric cardiologist seems to do an appropiate work, and hopefully it will end up showing that your daughter is healthy | ||
| victoria brown |
Lisa, and to anyone else out there. Dont' wait for this to happen again becasue they waited for my daughter and the next episode was fatel. LQTS does not wait for you to be diagnosed. This is a leathal heart disease. my duaghter died at age 22 and started passing out when she was 17. Her next episode was 5 years later and she died in her sleep. She didn't get that 2nd chance.If doctors would have taken my daughter and I more serious she would still be here and why i say this is becasue I was misdiagnosed with epilepsy for 20 years. We both had abnormal ekg's that showed prolong QT and no one told us this. When I went into cardiac arrest a year ago I was having Pvc's right and left and my doctors that took the disease more serous tell me I am a walking miracle and that I should have died. I was lucky to be alive because these doctors here in my home town new nothing about this disease. I had to educate them and that is sad becasue they get the big bucks. Get a doctor that specializes in Long QT. Dont' wait trust me I know. I do speeches on this disease to educate those who don't know much about this disease. I am not saying that all doctors are bad there are some great one's but I am sick of doctors giving the wrong advise or saying there is nothing to worry about. There word is lets wait to see if they do it again. They should just say lets see if this kills them the next time they pass out. And if they do pull though will they have brain damage if they do pull through. The 1st sign can be death. I dont' mean to scare you but to many doctors are not giving and taking this disease serious enough. When I had a stress test it shorten my QT interval. It is common in some and it is common for PVC's at least in my family it is. Also they are finding that some people with a QTC reading is normal but ccan be at risk if Long QT runs in the family. They are looking at more of the signs and syptoms than the level of the QTC. My daughter, sister and I have ringing in the ear. Get a hold of Doctor Ackerman at Mayo clinic. he is a specilist in long qt. Good luck email me if you wish. | ||
| cann6655 |
i had scd at the age of 48. no fainting etc. no warning either. to make it short i too have an icd and i have had pvcs as well. dr kanter i really dont understand that with so many postings of people having similar problems preceding diagnosis you always deny the fact that this or that is associated with long qt. i get more out of people that have been there and done that than i do out of drs. sorry do not mean to be harsh but sure seems that way! | ||
| debbie |
cann6655, I agree with you a 100% on this there is still alot unknown about long QT but the doctors don't listen to the people that have it. I have told my doctors that when I have my period that I have more spells with dizzyness and PVCs but they tell me that what I'm experiencing is Vaso vagal and that I need to drink gatoraide. I know that they are wrong in this because I have read postings from woman that have the same thing happen to them when they have their periods. Just because we don't have a medical degree doesn't mean that we don't know what we are talking about.When my sisters daughter started to pass out like she had been doing for years they wouldn't listen to her or see a connection with the two they said that she was depressed.My sister for 20 years thought that she had epilepcy but it took her daughters death to find out that it was LQT. Now she is educating doctors.If the doctors had listened to my sister and my niece Melissa would be here today.And that angers me! | ||
| Holli |
My daughter was diagnosed with longqt in March of '03, besides the prolonged interval which is 600 she also suffers from multiple pvc's and a very slow pulse rate. She received and ICD 2 weeks after being diagnosed, but always her doctors say the same thing, that the pvc's and slow pulse have nothing to do with longqt, but I disagree. Too slow of a pulse can also cause you to go into cardiac arrest and the pvc's are a mis-firing of the heart so how can they not be related to a condition that is primarily an electrical malfuntion? I think more research on this need to be done before doctors say they aren't related. Most doctors we took our daughter to after she would pass out had never heard of or knew little about longqt, however, we attended funerals of 2 different teenagers in our small town of 3000 who both died at different times from what was though to have been a heart problem even though they never had symptoms until they went into cardiac arrest and nothing was found to indicate a heart problem in the autopsy. Schools need AED's (automatic external defibs). They don't cost as much as people think and have proven to save lifes. More teachers and parents as well as doctors need to be educated on longqt. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Slow pulse could be but not neccesarily be related to LQTS. PVC is very rarely associated with LQTS. | ||
| debbie |
Dr. Kanters If PVCs are rarely associated with LQTs why is it that so many people on this web site are saying that they have them my sister Victoria has them. She also has a low pulse rate when she was in ICU waiting for her ICD the monitor was showing pvcs and her pulse rate was in the 40s after she had her ICD put in her pulse rate was set at 72. I wish that doctors would listen to the patients instead of just reading there medical books there is still alot unknown about LQT.I have shown signs of having it I've passed out I have pvcs but since it doesn't show on my Ekgs they can't diagnois me. They couldn't find the gene which they were counting on. So I have to hope that my next passout isn't fatal. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Doctors should always listen to their patients. Openness for patients messages is the only way to gain novel information of disease. On the other hand, the physician must not forget that he ought to have a scientific approach. I have seen abou 100 patients with LQTS and only one have complained of extrasystoles. There exist some extremely rare variants of LQTS where extrasystoles are common, but in general my practical experience and knowledge tell me that extrasystoles is not common in LQTS. Please notice that the existence of extrasystoles do not outrule that you have LQTS. Having LQTS does not exclude that you can have other problems with the heart. Since extrasystoles is not uncommon in the normal population, off cause even some LQTS patients will have extrasysoles too. However when I see a patient with many extrasystoles referred to me for LQTS evaluation, the first thought of mine is that the patient could have another disease than LQTS, which also can give QT prolongation, for example hypertrophic cardiomyopathy or arrhythmic right ventricular dysplasia. I then try to outrule other possible diseases. At least in one case I have diagnosed the patient as having LQTS after all, but more commonly finding an alternative diagnosis. | ||
| Mary C |
Here I have been reading much about LQTS. What number is considered an abnormal QT? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is not an easy question to give an exact answer to. 2.5 % of the normal population would have a QT interval greater than 0.44 sec, whereas 10% of Long QT patients would have QT intervals below 0.45 sec. The limit for women are 0.01 sec higher. In general below 0.45 on a resting ECG is considered normal, and greater or equal to 0.48 is considered definitive abnormal. Abnormal does not automatically means Long Qt syndrome, but could be due to other things affecting the heart. The diagnosis Long QT syndrome builds on several criteria, as you can se here on this LQTS site under diagnostic criteria. Even these criteria is not perfect, but we havent them better. | ||
| jmac |
I am trying to get any history EKG's etc but most of mother's side of family is deceased. Mostly from stroke and heart failure. Mother died about 11 years ago. She had had a stroke and in nursing care for 3 years prior to death. No one ever told me anything about heart attack but when I obtained the only EKG we could find, the strip read "possible anterior infarction" and her qt reading was 496. I do not know anything about EKG's but is this something that would be helpful with my diagnosis or non essential? There are no doctors records left. Any suggestions? Jmac | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
496 is a very long QT interval for a healthy subject. It does not neccesary means Long QT syndrome. It has to be verified by a cardiologist, since ECG machines often measures wrong. Furthermore your mothers clinical history has to be evaluated since several heart diseases are prolonging the QT interval, without the patient having inherited LQTS | ||
| paula alberto |
Thank you so much for providing us this forum to discuss LQTS. I have a couple of questions. First, I am a helicopter pilot and have also been a competitive athlete my whole life. I've also been an avid scuba diver with no problems. I've never fainted or had any cardiac problems, and my family has suffered no LQTS related deaths. Immediately after a spinal fusion surgery following a parachute accident, I was diagnosed with LQTS. I was in disbelief since I had been given EKGs on every flight physical since 1990. Turns out that my QTc on each of those EKGs had been between 440-525. The last electrophysiologist suspects, based on the shape off my T-wave, that I have LQT-1, but all of my doctors agree that my extreme physical activities should have had some effect on my by now. I was immediately put on Toprol XL 25mg and restricted from physical activities. My questions are: 1. Is it reasonably safe to resume physical activities, (jogging, volleyball, aerobics) since I'm on beta-blockers and have no symptoms? 2. After the surgery, I began to suffer from frequent PVC's. Am I at a greater risk now with the PVC's than before? 3. My 19 year old son and 2 year old daughter have also been diagnosed within the past month with QTc's of 490. They are also on beta blockers. Is there risk level lower now since we've never had any syncope or SCD in the family? 4. Finally, is it likely that our family has a "private mutation" since our LQTS doesn't seem to fit the mold as far as exercise, stress and adrenaline are concerned? Thanks again! | ||
| paula alberto |
I have one more question. My 19 year old son, recently diagnosed with a QTc of 490, runs 6-10 miles a day on average. He saw a local cardiac electrolophysiologist who DID NOT put him on beta-blockers and who actually told us that "exercise will probably improve his condition". Because my mother is a cardiac nurse who used to work with this doctor, she is reluctant to question his guidance. Should we seek a second opinion and should he be on beta blockers now? (both his sister and I also have LQTS and are on medication) | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
LQT1 is related to exercise. When treated the risk is substantial reduced, but it is not clear how much. Therefore doctors warns against exercise, and let the patients themselves decide how much they will follow the advice. In most circumstances it goes well even when patients dont follow advice, but unfortunately not in a few cases. The family history with several people with prolonged QT interval makes it very probable that you have Long QT. Family history does not affect the risk, probably because it depends of genes from the healthy parent. International experts including me recommends that most patients with LQTS until 40 of age are treated. If a electrophysiologist says that exercise improve Long QT syndrome, its time to find another. | ||
| Damien |
For Dr. Jorgan Kanters: Even if QT is not prolonged on EKG (420), is st-t wave abnormality on EKG diagnostic of Long QT? EKG says inferior and anterior septal St-T changes, borderline abnormal for age and sex. Patient is 25 years old, history is dizziness and lightheadedness since early teens, no cause found ever found other than just normal kid stuff they said. Has felt faint while participating in swim events and had to quit. She fainted from exhaustion after basketball game once, don't know if just just weak and exhausted as played whole game or actually fainted from whatever? She has wore event monitor and showed nothing. Parent has Long QT. thankyou Damien | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
The diagnosis of Long QT is based on syncopes, family history and QT prolongation. However these formal diagnostic criteria (You can see them at this website elsewhere) can fail. Its not uncommon that ECG machines gives a nonsens answer, so its more important what your doctor says about the ECG, if he/she has experience in LQTS. With normal QT the only way to come closer to the answer is to make a genetic testing. With symptoms during swimming its suspicious for a KvLQT1 mutation, but to give abetter answer the ECGs for your daughter and the affected parent have to be evaluated. | ||
| michelle |
My 11 year old son was having falling down episodes, legs completely not working for up to about 3 to 4 minutes and complaining of severe headaches continually for almost 2 months. When we finally got him to a doctor, he also was easily bruising, they immediately thought some type of blood disorder or cancer. We went through all the tests, everything came back normal. We went to about 4 other doctors and still nothing. Finally, we went to childrens hospital about 250 miles from our home. We saw several cardiologists and they all felt my son had the criteria for Long QT syndrome. They didn't go into what that really is but since my son used to have seizures due to stress ( he is not epileptic)they referred me to a neurologist for further testing. Afterwards he was put on Topamax for the migraines and to help control the seizures. Although he hadn't had any in almost 4 years. The doctors felt him falling down was really seizures. He was diagnosed of having an irregular heart beat and an enlarged aorta. His cardiologist said that he wants to see how he does on the Topamax before he decides about a beta blocker. I was wondering if I should just get a second opinion? I've been reading the message board and I am scared to death.. Please help with any suggestions that anyone has. I'm open to anything. Thanks from Ohio. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
To give you the right answer I have to know which criteria of Long QT syndrome was fulfilled. It seems that the cardiologists is not believing that your son having LQTS. Ask them how long your sons QT interval was. | ||
| sadsmom |
Dear Dr. Kanters, I am a sadsmom, and so are my children. We have been living with this disease for almost 18yrs. Our initial encounter was not an easy one. It caused my son of only 3yrs old to go into cardiac arrest in his sleep. By chance I found him, not knowing what was happening to him. I tried to save him. I could not believe what was happening. The doctors at the hospital where my son was revived, did not know what could have caused this. This is a teaching hospital where you would expect some of the best doctors come from. What happenened over the next 6mo. was very hard for my family and my self, let alone what my son endured. What I do want the public to know, is that LQT Syndrome strikes anytime, anywhere,. It can and is fatal, with or without intervention. There is nothing out there available, that is 100% protection against this terrible disease. There is this though, Take your life and those of your loved ones seriously enough to seek a second opinion when your doctor does not take you or your child's illness seriously. Call major hospitals in your area, find any literature on this subject, educate yourself. This will help you and your family to understand what this disease is and what measures you need to take. This will not make LQT syndrome go away but it will help you to cope .. I hope I can help . | ||
| Tina Maxson |
My step-son Robert, age 15, (I have been raising him for 6 years) was diagnosed with LQT yesterday. After reading alot of the posted messages I am scared to death. We consider ourselves very lucky to have been diagnosed before something fatal happened. Robert has been a baseball 'star' and basketball 'star' since he was 8. Last baseball season he complained of chest pains. The doctor said it was stress and anxiety. This last fall basketball season he started complaining again with chest pains and dizzy spells. After (3) ekg,s, treadmill stress test, holter monitor, ecocardiogram, the doctor said it was LQT syndrome. Robert also has a very low pulse rate of 38. It is normal for athletic persons to have a low pulse rate. But to be that low, the doc said he would have to be a marathon runner, which he isn't. His diagnosis has greatly saddened him as he was being scouted by several colleges for his abilities in basketball. His faternal twin Charles has a pulse rate of 48. He's next on the list for getting checked. His brother Edward is always complaining of not feeling well, runs low fevers, throws up alot, Doctor says it's just stress. After reading the postings I called his doctor and demanded a referral to be checked for LQT. The more I read about it the more frightened I get. I signed up for the SADS newsletter and requested their information packet. I hope it helps me understand this so that I can better care for the children. The thing that I am most confused on is the doctor said it could be caused by a low magnesium and potassium level. If those levels are corrected does it go away? His doctor said it was unlikely. If anyone can answer that question I would appreciate it. Thankyou | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Athletic persons couhave a very low heart rate. The former Tour de France champion had a heart rate of 25 at rest. Your sons heart rate is surprising low, and lower than I would had suspected from basket However I wouldnt say its impossible for a normal kid having that rate. Low potassium or magnesium can prolong the QT interval even in healthy subjects Make sure that the diagnosis is made by cardiologist which are used to work with Lqts patients. | ||
| Tina Maxson |
Dr. Kanters - I do not know how much experience this cardiologist has with Lqts patients. I will definately ask. He did say that Rob's potassium was a bit low but not real low. He ordered a magnesium level check. I asked him if those levels were low and we brought them to normal levels, would the LQTs right itself? He said it was not very likely. He indicated it was genetic and either Rob's father or birth mother may have it. He also asked that we test Rob's natural sibilings, that they may have it. He wants to test Rob's twin first, and then the rest. What are your ideas on this? Thank you so much for your help. | ||
| Bionic Roadrunner |
Tina, the potassium level in healthy individual is about 3.5mg to 5.0mg. In people with LQT2, it is better to keep it on the high side, between 4.5 and 5.0mg. Be aware that not all doctors know this fact if they are not familiar with LQTS. I have had many episodes and every time my potassium level was "not that low"...May be according to the rule, but with LQTS patients the rule is different. Nobody had ever paid attention to this until I was diagnosed with LQT2. So, if your son has LQT2 he should keep his potassium up. | ||
| Tina Maxson |
Bionic Roadrunner- Thank you for your post - The doctor did not tell us if it was LQT1 or LQT2. Rob didn't have any symptoms except chest pains. Which now I believe it is/was heart palpatations. I'll be getting his levels checked next week. I have a few questions for the Doc. I am also going to try to get him evaluated by a Doc at the Mayo Clinic here in AZ. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
When an individual is diagnosed with Long QT, my opinion is that his/hers parents, siblings and kids have to be examined. | ||
| gopinath |
My son has no symptoms of any kind. But his ECG has shown him to have QTc of 500msec. His heart rate is 93.could atenolol help | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I think you should seek an expert of LQTS. According to Professor Schwartz one of the leading LQTS experts in the world atenolol is not the best choice of betablockers, since it seems to have higher numbers of faintings. It is not proved that he is right but he recommencs nadolol or propanolol. We use metropolol mostly (and propanolol for infants). If the QTc is measured correctly there is a high chance that your son have LQTS. If he is below 40 of age, we would normally treat him with a betablocker, if not other circumstances are talking against it. | ||
| Wayne Bean |
I was diagnosed with either a thickening of the heart wall or QT Syndrome two years ago after a near-fainting spell. I was prescribed a 25 mg dose of Toprol to be taken once a day. One side effect I have noticed is an increased perspiration rate - I'll be sweating profusely while people around me are not. About a year after beginning this medication (the only other supplement/medication I take is a multi-vitamin) I started experiencing joint pain in my left elbow, later in my left shoulder, and now in my right elbow and shoulder. I have lost some functionality in both arms due to the pain and a loss in strength. Is this joint pain a side effect of the Toprol? | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I doubt | ||
| deirdre cummins |
Hi,my name is Deirdre, last year my 13 year old brother collapsed while playing football, unfortunately he passed away and we were told he had a cardiac arrest. It is just so devastating to see all these families affected by these heart problems. |