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Alexa
Posted on Tuesday, February 03, 2004 - 02:49 am:   

Could elevated magnesium (2.9)cause a prolongation of the QTc interval? I know that usually it is low magnesium that is the problem. Alternatively, could propranolol taken for LQT cause the magnesium level to be elevated?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Wednesday, February 04, 2004 - 08:20 am:   

When I first read your question, I didn't have any clue what to answer. Magnesium is used in the treatment of Torsades de Pointes, an arrhythmia commonly associated with long QT syndrome.

However after searching on medline, it seems that magnesium shortens the QT interval (Which somehow not is surprising). I have no knowledge if someone is using or investigating the use of magnesium in LQTS. I cant recommend its use (yet) since sometime spurios side effects occur.

I searched also about propranolol and magnesium levels. Although betareceptors (which are blocked by propranolol) are involved in magnesium transport in and out of the cells, it seems that propranolol did not affect magnesium plasma levels, at least in the rat
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Alexa
Posted on Friday, February 06, 2004 - 04:28 pm:   

I was interested in the possible connection between LQT, magnesium and propranolol because my now 5 month old son was diagnosed with LQT and has been on propranolol for 2 months. A world class expert wanted to know whether his magnesium levels were checked when the LQT was diagnosed because low Mg levels may prolong the QT. In responce, I had my son's electrolytes checked and all was normal except his magnesium which was slightly elevated (2.9). My research on medline showed that Mg is considred elevated if it is above 2.0 (according to one article) or 2.5 (according to another). The articles which dealt with hypermagnesemia noted that elevated Mg levels cause various abnorlamities from fatigue to loss of consciousness to arrythmia, cardiac arrest, even death - of course, these happen when the hypermagnesemia is severe, over 7.0. They did not mention QT prolongation. Here is the reference:
http://www.emedicine.com/med/topic3383.htm
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victoria bronw
Posted on Wednesday, May 26, 2004 - 06:36 pm:   

What I know about Magnesium is if the Pottasium and magnesium is low this can put you at risk of going into Torsodes. Mine was not real low when I went into torsodes but it may have been to low for my body. Everyone's body works different. I think my potassium was 3.6 which is within normal and my magnisium was below 2 or at 2. I am told that people with Long QT they like to keep the patassium level at 4.0 and the mag over 2.
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Tubehin
Posted on Thursday, May 27, 2004 - 12:07 am:   

I have recently been diagnosed with Long QT syndrome. I am a 23 yr. old female with no family hostory of sudden death or syncope. I am currently assymptomatic, and at my last EKG, registered with a 460 msec. QT interval. The Cardiologist who treated me stated only one possible treatment for me - inserting a defibrollator near my heart if i experience any symptoms. I however, am quite certain that there are other treatments, because with diet alone, i have shifted my QT interval from 540 (in Dec. 2003) to 460 (in May, 2004). If i were to continue being dilligent with nutrition, sleep and excerise, and if i were to attain a normal QT rate, would it mean that i am effectively cured of the condition, or am i simply managing it? Also, i just wish to confirm that if i were to reach a normal QT rate, the risks of having SADS is near nil, right? Finally, can one cure acquired Long QT syndrome (because i'm still uncertain that my condition is genetic...my relatives have all lived to ripe old ages...even up to 112 yrs. old!).
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debbie
Posted on Thursday, May 27, 2004 - 02:25 pm:   

Tubehin) Are you on any medications? Some medications can prolong QT.I have not been diagnosed with Long Qt yet but I have had at least 4 pass outs in my life and one of my EKGs showed 450 which the doctor said that I'm borderline. Mayo clinic says that there is no such thing as borderline you either have it or you don't. There is no cure for Long Qt syndrome. Right now I'm on a beta-blocker. My family believes that we have LQT3 or one that they haven't found yet. Mayo is doing a genetics test and have ruled out LQT1 LQR2. My sister lost her 22 year old daughter and she her self has a defibrollator and pacemaker put in. Almost all of their episodes have been when they were sleeping. My niece died in her sleep. Some people with Long Qt never show it on ekgs. I have had a number of them plus stress test and the tilt table test. I failed the tilt test. But my doctor still won't say that I have this. He said that I was dehydrated which I don't agree on. Have anybody else in your family been tested? If not they need to be.Sometimes the first syptem is death. Until the doctors realise that I have this I have to live like I have it. I can't take any medications without my cardios ok.
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debbie
Posted on Thursday, May 27, 2004 - 02:29 pm:   

Tubehin) Are you on any medications? Some medications can prolong QT.I have not been diagnosed with Long Qt yet but I have had at least 4 pass outs in my life and one of my EKGs showed 450 which the doctor said that I'm borderline. Mayo clinic says that there is no such thing as borderline you either have it or you don't. There is no cure for Long Qt syndrome. Right now I'm on a beta-blocker. My family believes that we have LQT3 or one that they haven't found yet. Mayo is doing a genetics test and have ruled out LQT1 LQR2. My sister lost her 22 year old daughter and she her self has a defibrollator and pacemaker put in. Almost all of their episodes have been when they were sleeping. My niece died in her sleep. Some people with Long Qt never show it on ekgs. I have had a number of them plus stress test and the tilt table test. I failed the tilt test. But my doctor still won't say that I have this. He said that I was dehydrated which I don't agree on. Have anybody else in your family been tested? If not they need to be.Sometimes the first syptem is death. Until the doctors realise that I have this I have to live like I have it. I can't take any medications without my cardios ok.
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jm
Posted on Friday, May 28, 2004 - 03:34 am:   

Debbie:
Is your doctor at Mayo? Have the beta blockers helped your symptoms? How long has Mayo been working with your DNA? Hope you find out something soon.
JM
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debbie
Posted on Friday, May 28, 2004 - 01:19 pm:   

jm My doctor is in Madison wisconsin Mayo clinic is working with my sister they have been working on this since September. We are hoping that they find something soon.As far as the beta-block I was put on that in october and since then I've been having problems I passed out Christmas eve and I've been having more dizziness and pvcs. This will be brought to my doctors attention on June 7th. debbie
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tubehin
Posted on Friday, May 28, 2004 - 09:46 pm:   

Debbie:

Thanks for your response. Indeed, I am not on taking any medications. It sounds odd that your doctor hasn't diagnosed you with Long QT, especially because you have family members who have suffered and are suffering from this syndrome. I don't have any family members who show physical symptoms, but i am encouraging my parents and sibblings to undergo tests. So, with a QTc of 450, you have experienced syncopes, and dizziness? I am curious as to whether there is a 'safe' QTc level for a Long QT sufferer. For instance, if i go from 460 to 440, will i enter a 'safe' zone? Thanks for any comments.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Sunday, May 30, 2004 - 08:49 am:   

Dear Tubehin

The QT interval is highly variable and it changes from day to day in healthy subjects and in Long QT Syndrome patients. If you had a corrected QT interval of 540 msec and no other signs of cardiac disease, the diagnosis LQTS is likely.

Betablockers normally work fine in most cases. Dieting and banding could sometimes provoke LQTS if it decreases potassium levels. There is no evidence for that dieting could maket LQTS better.

Shortening the QT interval makes the likelihood of symptoms lesser, but there is no safe zone. Even at a corrected QT interval at 410 (which is normal) there is a small risk of symptoms.
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tubehin
Posted on Monday, May 31, 2004 - 05:57 pm:   

Dear Dr. Kanters:

Thanks very much for your response. I wonder if i may follow-up with a couple more questions:

1) If i have had a QTc of 471 msec (i apologize, i was mistaken in my first email - my QTc at its worst was 471 msec) with no side effects, does this mean that at a QTc of 460 msec or lower, i will not experience symptoms? I am curious as to whether each heart has a unique 'threshold' in coping with prolonged QT intervals. As mentioned in my other entires, i have no family history of syncope or sudden death.

2) Re: Medical treatment. I am a little uncertain about how to approach my family Doctor and the Cardiologist i visited. The Cardiologist simply said that i must watch my diet, and return to him if i have any symptoms (like syncope). He never mentioned beta blockers as a preventative measure, and only mentioned inserting a defibrollator if my situation worsens.

My family Doctor didn't know very much about Prolonged QT, and said she 'will look into things' and call me only if there is anything of concern. It has been a week, and i haven't heard from her. Should i take some initiative at this point, or should i trust that these Physicians are capable of deciphering what's best for my situation?

Sorry for the length of these questions!

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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Tuesday, June 01, 2004 - 09:01 am:   

1) no. There will always be a risk, although it seems reduced with shorter QTc.

2) Betyablocker is the standard treatment for Long QT Syndrome, and its very effective, beside some rare variants. I dont understand what your cardiologist means about your diet. Your potassium levels should not drop down, that means that you should avoid heavy banding.

Are you sure that the cardiologist have diagnosed you with LQTS. I wonder why he hasnt treated you with betablockers in that case?
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tubehin
Posted on Wednesday, June 02, 2004 - 06:49 am:   

Dear Dr. Kanters:

Thank you again for your response. Regarding point number 2 - In December, my Potassium levels were quite low (3.6). However, my Potassium levels are now normal (4.2), but i still have a QTc of 460.

Hence, the Cardiologist said that i definitely have Prolonged QT Syndrome. He then went on to explain that diet was the best means for controlling LQTS, unless i show any symptoms, in which case i should go back and have a defibrollator inserted near my heart.

Should i take charge of the situation and request betablockers?

Sincerely,
t
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Debbie
Posted on Wednesday, June 02, 2004 - 01:17 pm:   

tubehin, You need to take charge diet is not the best means to treat LQT. I would see another doctor.Your doctor is saying to wait and see well your first symptom could be death. That may sound harsh but that is one of the symptoms of LQT. debbie
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Wednesday, June 02, 2004 - 02:10 pm:   

I dont know your doctors reasons, but we treat all patiens younger than 40 years, in accordance with the international guidelines, with betablockers.

Maybe there is good reasons for your doctors choice which you and I dont know, but I would ask him why not betablockers?

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tubehin
Posted on Friday, June 04, 2004 - 09:22 pm:   

Dear Dr. Kanters:

Thank you for your advice. I think the least i can do is approach my doctor, and simply ask about betablockers.

You have been very kind with answering my many questions!

Regards,
tubehin
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Marianne
Posted on Monday, July 12, 2004 - 04:39 pm:   

Hi tubehin,

I believe I would ask my doctor why? on the no beta-blockers. I dont think waiting to see if any symptoms occur is the best way to go. Granted, I had no idea that I had this condition, until my arrest in January. Then I found out mine is of the hereditary nature. They (my doctors) say what brought on the arrest was I was dieting at the time, and my heart went for potassium, and guess what? There was NONE. My potassium in the ER tested at less than 2. At any rate, I dont recommend waiting for symptoms to occur. It could mean death. Between the paramedics called when I passed out, and the ER, I was shocked upwards of 40 times. I would get another opinion, if I were you.
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tubehin
Posted on Monday, July 26, 2004 - 07:42 pm:   

Thank you, Marianne and Debbie.

I am going for a second opinion tomorrow. Marianne, are you currently on beta blockers? Have you had any other episodes since January? How are you coping?

Regards,
tubehin
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debbie
Posted on Wednesday, July 28, 2004 - 10:25 pm:   

tubehin, Good luck with your doctor tomorrow and keep me updated. I haven't yet been diagnosed with long QT yet it isn't showing but that doesn't mean that I don't have it. My father was in a serious motorcycle accident june 23rd he is at this time recovering very well except that he may have a heart problem we don't know if it is caused by the accident or not they are doing tests on him now. But since his accident I had been under alot of stress and have had 5 spells in a 5 week period. I have not fainted but have come very close. I know that this is due to the stress I have been under. Mayo clinic said that they will see me. I plan on going to see them when I can.There maybe something that my heart specialist isn't seeing.I would go now but I lost my job with my insurance which I believe that my employer get rid of me when they found out that I have a heart condtion. This has happened to other people also. But they did it in a way that I can't prove. Anyway keep me updated on what you find out. Take care
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Cindy Bonasse
Posted on Thursday, July 29, 2004 - 04:40 am:   

With all of this interesting information I just read on this board I just have to add something. Beta blockers are a very effective treatment to the LQT. I went 3 years with LQT being undiagnosed. After being diagnosed and having an ICD implanted I have done very well with beta blocker treatment. The dosage was not correct at first and I was shocked and kept alive 8 weeks after I was diagnosed and the ICD was implanted. Since the dosage was adjusted I have had no more shocks or passing out episodes. I still have side effects from the LQT. Such as good days and bad but for the most part the beta blockers are doing the job and the ICD is just a back up. As others have said the first symptom can be death. I really hope that you get some answers from the new doctor and at least get beta blockers as a precautionary measure. Best of Luck. Cindy
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michelle foley
Posted on Monday, September 27, 2004 - 05:59 pm:   

My now 10 ˝ month old son (twin) was diagnosed with a Heart Arrythmia at 3 months old. He was admitted into the intensive care unit at Schneiders Childrens Hospital with a heart rate of 270. He did not respond to 4 diff. meds and needed to be paddled 3 times. Still, it was touch and go for the 1st 48 hours. After 8 days in the ICU he was sent home with a 24 hour a day heart monitor, 5 medicines including Lasix, Digoxin, Amioderone, Analapril and an injection blood thinner. At this time he is still on .04 of Digoxin and 8.6 of Amioderone. Two weeks ago he received the Holter Monitor which showed consistant episodes throughout the 24 hours. The doctor increased his meds and the next Holter monitor showed only 1-2 episodes. Per our Dr. he can only be on the Amiorderone for a year and that date is coming up soon. We were all hoping that by now he would have grown out of it but after 7 months I do not feel confident this will happen. The Dr. also indicated that there is another medicine that he can take in place of the Amioderone but how is it that one medicine that can affect his liver and thyroid can be replaced with another medicine to do the same thing wouldn’t affect his other organs?? The next step is for an eblasion to be done. We have been told that it is not major, surgery one day, home the next. Is this true and if so what are the chances that this will cure him??



Sincerely,





Michelle Foley

Northport, NY
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Wednesday, September 29, 2004 - 02:21 pm:   

You have to ask your doctor. It does not seem that your son have Long QT syndrome, so i am sorry I cant help you.
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Mary C
Posted on Monday, October 04, 2004 - 06:36 am:   

I have been diagnosed with sinus bradycardia, left bundle branch block, and my QT/QTc is 478/431. I have been hospitalized several times with Atrial Fib. and have a history of 4+ mitral regurg. I'm on beta blockers(atenlol 25mg and Coreg 12.5mg twice a day) Now they are talking about implanting a pacemaker/defibrillator. What do you think? What do you think of my QT?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, October 04, 2004 - 12:01 pm:   

A QTc of 431 if measured correct is normal. It seems that you have other problems with your heart which are giving your problems.
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Mary C
Posted on Monday, October 04, 2004 - 04:12 pm:   

Thank you for your quick reply. I have had problems for many years. Have been doing quite well up to now. Don't know much about the pacemaker but trying to get more informed. Was hoping the meds would take care of the problems but the docs just keep increasing them. Not sure how to read the numbers. Mine is as above but since there are two, how is it read? What is the difference between QT and QTc? Again, thanks for your info and help.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Thursday, October 07, 2004 - 06:10 pm:   

The QT interval changes with the heart rate. To compare QT intervals one have to correct to a pulse of 60. This number is called the QTc (QT corrected). Your QTc is 431 which is normal. The reason that your QT interval is 478 is your slow heart rate.
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cann
Posted on Saturday, October 09, 2004 - 04:15 pm:   

dr if my qtc is 525 does this mean i have long qt? just left my 2nd ep and he says i do not have long qt. very confused at this time. if i do not have long qt then why the showing of qtc 525? thank you
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Saturday, October 09, 2004 - 08:07 pm:   

A QTc of 525 is certainly prolonged. Please remark taht the measurement has to be confirmed manually since ECG machines can not always measure reliable.

This doe not neccesary means you have Long QT syndrome, since several heart disease have prolonged QT
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cann
Posted on Sunday, October 10, 2004 - 05:32 am:   

ok. i will try to be short w/ this. since 1/2004 i have been told i have long qt, slight damage but echo showed i was healing. potassium cked at 2.5 while in er. i have icd, was on pot. and mag. for awhile. i am now on 50 mg toprol,80mg diovan. just went to another ep this wk and he said he didnt see any long qt and that i had heart damage because of a viral infection and this is what caused sca. he said he does not know when i was tested for pot. level so cannot say i was at a loss when i collasped. to put it mildly my head is spinning. i have been told numerous times from spec. to just be glad i am alive. that goes without saying---i do not have any memory of approx 5 wks of my life. i do expect to be told something of substance or agreement from the both. this is the craziest situation. suggestions? comments? thank you
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Wednesday, October 13, 2004 - 08:43 am:   

It is impossible to give a diagnosis, without examining the patient and having full access to all tests.

It seems that you have qt prolongation due to another heart disease. The best advice I can give you is to discuss that with your cardiologist
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cann
Posted on Thursday, October 14, 2004 - 10:32 pm:   

thanx to your response. i have been told i have viral myocarditis. ok but then i read that you shouldnt be on beta blockers if you have had damage because of this. what do you know of this? thank you!
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Tuesday, October 19, 2004 - 04:13 pm:   

betablockers is well suited in many conditions including many arrhythmias of other causes than LQTS. It is also used in heart failure, so there could many reasons why you were put on betablockers.
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cann6655
Posted on Monday, November 01, 2004 - 09:33 pm:   

sorry to keep asking questions---but one more please. the 2nd ep when shown the little card i carry {with ekg reading that 1st dr gave me}said he didnt see any qt longation. for 9 months that is what i was told and then this. now they say they cant tell me why i had scd and why i have viral myocarditis. i dont know what to think right now head is spinning and i dont know the right questions to ask the ep. who is right? the 2nd ep nurse said sometimes they just grab anything if they dont know. that is unethical to me and this has changed my life soo much. thank you
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, November 15, 2004 - 07:14 am:   

It is often seen that the doctor does not know the reason why the patient got the disease. That does not mean he/she is a poor doctor, but tells taht the human body is extremely complex.
On the other hand patients almost wants an explanation. Therefore you are tended to give an explanation which more a based on the doctors belief than on exact evidence. That makes patients more comfortable, unless as in your case another doctor has a belief that is in the opposite direction.

The problem in your case is that it may be impossible to tell why you had your symptoms. You have the ICD so whatever the reason you are treated the most effective way.
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Jim Lockridge
Posted on Thursday, December 09, 2004 - 07:52 pm:   

Dr. Kanters...I have a 14 year old son who is extremely active in soccer. We just found out that he may have LQTS. He's never had any of the symptoms for LQTS..nothing. But he just went thru an extensive session of ElectroPhysiology testing and the Dr.'s seem to think this is what he has...about 8 months ago he took a malaria medicine called Larium (sp)..some of the drawbacks to this med. says..rapid and irregular heart beat...do you think this could have triggered the LQTS ?? Two weeks before he took it he had a physical done and nothing showed up wrong...thanks for any insight..
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Friday, December 10, 2004 - 06:33 am:   

I dont believe´that taking lariam 8 months ago still could affect the rhythm. You have to await the full evaluation for Long QT and hear what your doctors say.
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reneerial
Posted on Thursday, March 10, 2005 - 04:28 pm:   

I have a few questions. My son is 3 1/2 yrs old he was recently in the hospital for a viral infection and on the day he was to get out because he was a lot better he started going down fast. His sat's dropped to 87 and his heart rate went to 62 he was unreponsive and finally after being on o2 he was more alert. This whole time he was in arrythmia he was transferred to a picu hosp. and we were told that he probably has qt syndrome he stayed in arrythmia for a few days and then became fine. He was given zithromax and a breathing treatment the morning he went bad. also his dad has an electrical problem he was diagnosed with at the age of 5 fisrt it was called pat then at 26 he was told he had wpw he had 2 extra pathways both ablated now 8 months later he is not doing good having pvc's (that are different in shape than he had before the ablation)mostlty bigeminy more than 25 in 1 minute. Anyway they now say that there is nothing wrong with him(my son) because his ekg was normal and a holter moniter were normal and that for safety sake he is to stay away from all the med's known to cause a qt syndrome pt to have a spell. I was wondering if this was normal or do i need a second opinion. (by the way his sat's stayed at 94 for 3 weeks after being discharched from the picu and stayed extremely tired and told us on 2 sep. occasions that his heart was hurting and beating in his trhroat once was while running and one was when we woke him from a nap. Can you give me any advice?? Thank you , Renee' Rial
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Saturday, March 12, 2005 - 07:50 am:   

Its impossible to give you a specific advice without having seen your son myself and having all information including the ECGS.

It looks like that your son had prolonged QT due to zitromax which is a well known QT prolonging agent.

I cant say for sure whether your son is a silent carrier of LQTS which was unmasked by zitromax. You have to discuss that with your cardiac electrophysiologist
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Tylie Eaves
Posted on Friday, June 10, 2005 - 12:39 am:   

I just stumbled across this forum and have found it informative. I had a single episode and was diagnosed with Long QT at the age of 14 (ten years ago <i> after a weekend with friends during which I injested only Dr Pepper and Donuts) and no family history or true cause was determined (except for the lack of potassium and magnesium in my system). Without considering any other options, my parents decided the defibrillator was the way to go. For a full decade I have been healthy and nutritionally sound. I have had no episodes. Recently I had the defibrillator replaced and a new generator and lead implanted. After a month, I started having some pain with my breathing. I went to the doctor and had x-rays and other things done, but was sent home. The next day, the pain had worsened and my husband took me to the clinic. While walking in, I began getting shocks...SEVERELY PAINFUL SHOCKS... and was rushed to the ER where it was determined that the lead for my new ICD had pulled a hole in my heart and was causing bleeding into the paracardia, increasing my HR (at the highest it reached only 130) and because the lead wasn't anchored, it was double counting and giving inappropriate shocks. I got 38 shocks in all before I was given a magnet -which I now carry in my bag all the time- I was then airlifted and surgery was performed to remove the lead, the hole sealed on its own, and a drain was left for a few days to remove fluid. I then started having some funny beats ... whatever it's called when the ventricle beats first , backward heartbeats... these were fairly rapid and it was determined that the drain was creating irritation and causing the problem. After the drain was removed, these episodes got better and have since stopped. After much pressure from family and suggestions from my doctors , I agreed to have a new ICD implanted, subpectorally. Its been 3 weeks and things are getting back to normal except for the fact that I am terrified of the device. I haven't had any episodes or events, and I am concerned about malfuntions. Is someone at fault? I am concerned that no one ever suggested other methods for managing the LQT and automatically planted the device that has, to date, been more trouble than its worth. What are the chances I'll have problems from receiving so many inappropriate shocks? Am I at an increased risk, can I get back to normal? Do I even need this thing? What are the chances this thing will tear up again? I can't take the idea of going through that pain again.
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Nancy Y
Posted on Friday, June 10, 2005 - 07:21 pm:   

Hi Tylie

I was diagnosed with LQT just last year at the age of 40 and have gone through many of the same questions that your asking. I also had a lead perforate my heart wall which lead to pericardial effusion and tamponade (my blood pressure was non-existant). I think with the newer smaller leads, perhaps there is more risk for perforation. For some reason, my ICD did not register any problems during this period, even though on chest x-ray, my ventricular lead had clearly moved. I also wondered if having an ICD was worth the risk and anxiety I've given my family. That is, until last January when I had my first documented episode of ventricular fibrillation and received therapy from my ICD. I was alone at the time and would probably have died with my small kids finding me hours later. I shudder at the thought of that happening and am very thankful I have my ICD, despite all of the problems. I now have an echo done any time I have chest pain or weird symptoms, just to make sure.
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Tylie Eaves
Posted on Saturday, June 11, 2005 - 12:49 am:   

Nancy,
Did you pass out with your v-fib? I cannot tolerate the thought of going through shocks fully aware ever again. It was horrible.
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Nancy Y
Posted on Saturday, June 11, 2005 - 05:17 am:   

Tylie
Yes, I must have passed out or else my brain was just enough deprived of oxygen that I did not feel the shock (I did not end up on the ground though, so that makes me think I wasn't totally unconscious). I am fortunate that I don't know how it feels, but regardless, its better than being dead! Please talk to your doctor about your anxieties--many people with ICDs have anxiety problems because of their fears of shocks/death. It can be treated.
Have you considered genetic testing to try to confirm your diagnosis? It might help to know whether you need the ICD. However, it may not be positive even if you have LQT (mine results were negative) because they cannot identify 30% of the LQT genes and it is expensive (but some insurances will pay).
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Tylie Eaves
Posted on Monday, June 13, 2005 - 06:55 pm:   

I don't think I would have any anxiety if it weren't for 38 UNNECESSARY AND INAPPROPRIATE SHOCKS. I always viewed my ICD as an insurance policy incase my electrolytes do something funny (they think my first episode was because I had no potassium in my system). I have had the thing for over a decade and it never bothered me before...but now I feel like a basket case. It's a relief to know that, should I actually need it, I will most likely pass out first. I have considered genetic testing, but I don't know if we can afford it. I am most concerned about passing it on to my children...we plan to start trying to concieve soon- and I have a concern that they will suffer because of me. I have no family history of the illness... my great grandparents and grandparents lived into their 90's (some of them are still alive) and my parents are both normal as is my sister and cousins. Why would I be the oddball? I have an appointment with a head doctor soon. Maybe I can get some help with my concerns then. Thank you for your posts.
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Nancy Y
Posted on Monday, June 13, 2005 - 07:51 pm:   

I would definitely have anxiety if I had so many shocks--inappropriate or appropriate! I'm sorry you're going through so much--hopefully since you hadn't had problems during your first 10 years, you won't continue to have problems.

I also have very limited history of sudden death in my family--just my grandmother who died of unknown causes at 41 years. None of my 10 aunts/uncles nor my mom/dad & sister/brother had any symptoms, which I find odd for an autosomal dominant problems. I wonder if I'm a new mutation. My kids ECGs are considered borderline so they have to be checked yearly and are both on prophylactic beta-blockers. I wish the genetic testing would have given me some answers for their sake. Good luck with your appointment.
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Bionic Roadrunner
Posted on Wednesday, June 15, 2005 - 08:26 pm:   

Hi Tylie,
Why would you be the oddball? Who knows? I am one of them, or as I prefer to call myself, a mutant:-). No one in my family ever had any heart problem either. Like you, I have very healthy relatives who all lived to be very old and then there is me and my gene mutation... Genetic testing revealed the problem and I unfortunately passed the gene on to one of my children whom the doctors considered borderline and put on beta-blockers as a preventive measure.
I also experienced multiple shocks (although not as many as you) and started getting quite anxious after that experience, although I had accepted a shock here and there over the years without any emotional problem. I went to see a therapist for a while and this really greatly helped me. It is good once in a while to get help to put things back into perspective.
Good luck to you and stay healthy.
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Tylie Eaves
Posted on Friday, June 17, 2005 - 12:36 am:   

Thanks, were you also completely aware of your shocks? How old are you now?
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Bionic Roadrunner
Posted on Friday, June 17, 2005 - 04:44 am:   

Yes, I was aware of my shocks and cannot imagine getting as many as you had. I am 60 now and was diagnosed at 47 and received my first device then.
I hope you find some peace of mind. You must realize that thousands of people have defibrillators. Only a very small percentage of them have major problems like the ones you experience. Of course, those are the one you read about in forums such as this one because people look for answers when they have problems.
There is no reason why you should have the same problems this time. Think of your defibrillator as a life saving device. Try to relax and keep your mind busy.
Take care.
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Bionic Roadrunner
Posted on Friday, June 17, 2005 - 04:49 am:   

Tylie, I thought that you may want to join a support group for people with defibrillators. Ask your nurse at the hospital, they may have one there. Also, there is a very good support group online for people with defibrillators and pacemakers. The address is www.implantable.com
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Tylie Eaves
Posted on Friday, June 17, 2005 - 10:50 pm:   

Thanks, I appreciate the link, and your words of wisdom and comfort. I've had the ICD for so long (ten years) and I have been invited to many a support session. I haven't had any episodes in a decade...except the ones that medical professionals have induced. I was shocked all those times for nothing and now I fear getting shocked again. I pray daily that it never happens. My device is set for V-fib only, with a rate at 214. Do you know what yours is set for? I can't believe I am so stressed over this...I should be thankful I'm still here- instead all I do is worry.
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Bionic Roadrunner
Posted on Saturday, June 18, 2005 - 01:33 pm:   

Tylie, my device is also set up for v-fib only at 214 just like yours.
Don't beat yourself about being worried. It is only normal. I am sure you hear people telling you to be happy because you are alive, but anyone of them would feel the same way if they were shocked as many times as you have been. Unless you have gone through it, it is mentally very difficult to understand how hard it is to deal with multiple shocks.
Try to focus on the positive: your leads have been repositioned, the damage repaired, there is no reason it should happen again.
I noticed that your potassium was too low when you were diagnosed. Try to keep it up, around 5.0 which is the high side of normal. This is what LQTS expert recommend for us. I have managed to do so by eating yogurt and a banana everyday because the supplements the doctor gave me were still not enough. Better eat good food than pills... Knowing that my potassium is at a good level makes me feel better because I know that several episodes I had were caused by low potassium.
I hope this helps a little. Do try to talk to someone who will be objective, it does help to unload. Try not to make it an obsession. I know, I have been through it.
Take care and stay well!
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Alice Trevino
Posted on Saturday, March 04, 2006 - 07:41 am:   

My 15 yr. old daughter went into cardiac arrest Aug. 15th 2005. She has since been diagnosed with LQTS1. After genetic testing done on the family (myself, husband/dad and 2 sisters), I am the one that pasted this gene down to my daughter (I am 45 yrs. old). I have never had an episode of any kind, nor has my mother, which we believe was pasted to her from her mother. After looking at early deaths that happened to 3 or 4 of my grandmothers siblings and my great grandmother passing at an early age. Our daughter has been very active all her life in sports: volleyball, baseball, basketball, soccer. Staying extremely busy and traveling all summer the last 3 years with soccer and ranked nationally for her age group. Just wanted to give you some input as to how active she has always been. Now, my question...on the day that she went into cardiac arrest, she had gone to the dentist and had some teeth filled (which she has had done before). Now, knowing that she has LQTS, she was given Lidocaine and epinephrine, two drugs of which she should never have had with having LQTS. After the dentist, I took her to a volleyball practice, which was very light. For 2 hrs. they had a guest speaker, and for the last hr. it was really a very light practice, working on setting. Her dentist appt. was at 1pm that day and at 3 I dropped her off at school, at which time her mouth was still very numb. She collapsed at 6pm, I figured, about the time the med's would have been wearing off and traveling through the blood stream, at which point could have contributed to the cardiac arrest. I can not find any statistics as to the chance of this happening again. She really wants to continue playing soccer but the doctors say "no". She has been put on beta-blockers and has an ICD. I would just like to hear what you would have to say about this. Thank you, Alice
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Saturday, March 04, 2006 - 01:49 pm:   

I doubt that the dentists medicine has something to do with your daughters arrest. Your daughter would also have had an ICD in Denmark. If you never have experienced any symptoms and are beyond 40, it most likely that we would had decided not to treat you, but that depends of an individual assesment. The risk is low but not zero for you

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Alice Trevino
Posted on Saturday, March 04, 2006 - 03:47 pm:   

Dr. Jorgen, They did treat me with beta-blockers and went ahead and implanted an ICD, for we have a daughter that is 22 and has Cerebral Palsy and Blind. Therefore being the main caregiver for her, and all the stress that we have been under with what has happened with our 15 yr. old, they/we didn't want to chance anything happening. Have there been any studies of the following: 1) Episodes or ICD's going off during sports and how often. 2) The sport that the patient played, and did they resume playing, and whether or not they had another episode. 3) What sport were they playing, after having an ICD planted, and having another episode.
I have read just a hand full of statements from people saying they did not change anything and continued as they had previously before cardiac arrest. I have read 1 article and have a friend bringing me another that says a player with an ICD, diagonised with LQTS, continued to play college varsity soccer.
Ciera's EP says "no" to any competitive sports. Being as active as she was, why did this not happen sooner? What are the reasons to no competitve sports, is it because they lack and need more studies done behind LQTS, and don't have all the answers? Could it be they don't want injury to the ICD? What is behind the main reason "NO" to competitive sports? Where can we find the different studies that have been done about LQTS1? Thank you for such a quick response above. Alice

Anyone that may have continued playing after cardiac arrest and had an ICD implanted. Please drop me a line to tell me how things have gone for you. Have you had any episodes? Trouble with ICD? Anything of interest that might help. email: et_1284@yahoo.com
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Bionic Roadrunner
Posted on Saturday, March 04, 2006 - 06:24 pm:   

Here is a very interesting article to try and help you find answers for some of your questions.
http://circ.ahajournals.org/cgi/content/full/109/22/2807
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Sunday, March 05, 2006 - 11:42 am:   

The reason for avoidance of sports is due to some LQTS arrhythmias are stress or exercise related. The guidelines is referred by the link given by Bionic roadrunner. There is to my knowledge no evidence what the risk is when treated with betablockers, but I doubt that any american doctor would accept sports facing a huge lawsuit if some thing goes wrong.

With an ICD there is also the risk of lead fracture.

Doctors can only give advice for or against.
Sports could be dangerous in LQTS patients. A life where the patients are afraid for anything could be a ruined life.

The balance is probably a little bit different in Europe than in US, but the decision is the patient with proper advice from the doctor. There is no definitive yes or no. Life is dangerous both for you and me, but a little bit more dangerous for you and other LQTS patients.
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stacy
Posted on Thursday, March 16, 2006 - 01:46 pm:   

my duaghter has been having episodes of heart palpitations, some shortness of breath, and 1 episode of passing out. I took her to the family doctor, who ran an ekg and it came back borderline prolonged qt intervals. We saw a pediatric cardiologist, my daughter is only 12, who evaluated her and still we have no answers. She did a 24 hr holter monitor with no results yet. The palpitations seem to last no more than 4 minutes, they come on suddenly and stop suddenly, she only seems to experience them when she is resting, however she is starting to experience even while at school. she has not had any during physical activity, that i am aware of. We have a family history of early heart disease, and my mother just passed away at age 54 from what was said to be cardiac arrest, however she had palpitations and fainting spells as well. Any answers?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, March 20, 2006 - 06:58 pm:   

No it could be anything.
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Marker
Posted on Wednesday, March 22, 2006 - 11:29 pm:   

I am confused. Can you suffer a cardiac arrest from a long qt interval due to electrolyte imbalance and still not have long qt SYNDROME?
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Justine
Posted on Saturday, March 25, 2006 - 02:00 pm:   

I have been diagnosed with Long QT. Physician
prescribed Zithromax for respiratory infection. Is it safe to use?
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Bionic Roadrunner
Posted on Saturday, March 25, 2006 - 10:22 pm:   

No it is not! Here is a list of the drugs NOT to be taken by LQTS patients: www.qtdrugs.org
You could print a copy of the list and bring it to your physician to put it in your file.
Do not take anything over the counter either unless you check it first with your list or ask your pharmacist.
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, March 27, 2006 - 06:17 pm:   

To Marker: yes

To justine: No. Zitromax is a macrolide antibiotics which is known to prolong the QT interval.
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Terry
Posted on Wednesday, April 12, 2006 - 09:05 pm:   

Hi, I'm a 50 year old male and have just been diagnosed as probable LQTS1. My QTc is 485 and does not shorten or lenghten under the epinephrine challenge. I have never had any symptoms, never fainted and do a lot of long distance cycling.

The QT issue was discovered because I was being investigated for arrhythmia that started very recently. I'm experiencing periods of PVCs and a 48 hour holter showed brachycardia at night time with SA Block that results in brief periods of very slow or stopped heart beats.

The specialist wants to put me on Beta Blockers for the LQT and install a pacemaker to counteract the slow heart rate (which will be made worse by the beatablockers) and the SA Block.

Are there not hybrid ICD/Pacemaker devices available that could defib in the event of a QT event and pace the heart in case of the slow heartbeat?

Since I've had no symptoms and am physically fit, I'm reluctant to go on betablockers for the rest of my life especially if they will make me feel sleepy or have other side effects. I'm not big on taking medication at the best of times.

Can anyone offer any advise on the ICD/Pacemaker hybrid vs. drugs and a Pacemaker.

Alos since I'm symptomless at 50 should I just leave well alone? (The Brachycardia will still need to be addressed).

Thanks!
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tmarker007
Posted on Thursday, April 13, 2006 - 05:44 pm:   

What do you think about a link between a LQT and hyperglycemia or hypoglycemia?
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, April 17, 2006 - 11:44 am:   

In denmark we normally not treat asymptomatic LQTS patients over 40y. That excludes persons with any faintings during their lifetime. Their risk is so small that the risk with betablocker is considered equal. The risk with ICDs are much higher than with betablockers. We do not use pacemaker alone (exccept small kids with LQT3)
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Dr. Jorgen Kanters
Username: Jorgen

Registered: 08-2003
Posted on Monday, April 17, 2006 - 11:45 am:   

There is some evidence of insulin is involved in regulation of the QT interval. If it has any practical consequences had to be defined
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Elizabeth
Posted on Tuesday, May 16, 2006 - 06:50 pm:   

This is all new to me so I have a lot of questions: I am 40 years old and had an episode of syncope one month ago (first ever). I went to the ER and they had me stay overnight for observation. the cardiologist found nothing odd on my ECG (thought I have mild MVP with mild regurg.) and claims it was vasovagel from waking too quickly and being slightly dehydrated (my bloodwork showed low potassium, calcium and high hemoglobin) I was also orthostatic on pulse while in the ER. Upon seeing an electrophysiologist, he feels I am borderline long QT. Three different ECGs showed 410, 420 and 460 ms. I did a stress/echo which did not reveal any "significant prologation of QT" but he has asked for a follow-up appt. I have been wearing a King of Hearts monitor for a month and have not recorded anything. My pulse does tend to race a bit when I am worried - I think from anxiety about the uncertainty of this situation. There isn't anyone else in my family that has shown any similar signs or symptoms. I have two small children and am worried about whether they will have a tendency towards this as well. Here are my questions: Where can I find a list of meds that are o.k. for qt? Are there any antihistimines that I can use? Is dramamine o.K.? Advil? Cough Medicines? What vitamins/nutritional supplements would be beneficial? When should I worry about my racing pulse? Every once in awhile it will be at 100-110 while resting. My next appt. isn't for another month but should I be on beta blockers now to help slow things down?
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Bionic Roadrunner
Posted on Tuesday, May 16, 2006 - 08:41 pm:   

Elizabeth,
I am not a doctor or any kind of expert on the matter, but I can offer what I have learned by experience.
First, the drug list that should not be taken by LQTS patients can be found at www.qtdrugs.org
I believe it is the most complete one you could find.

Because no one in your family has or had any heart problem is in a way reassuring, but not a certainty for your being free of it: I am the first one in my family to have LQTS. I am a mutant:-)...but unfortunately, I have passed it to one of my children. There is effectively a 50% chance of passing it to an offspring, so, should you be diagnosed with LQT, you should have your children checked too of course and your close relatives (siblings and parents).

While you wait for your results, make sure to keep your potassium up (through food like bananas, potatoes, V8 etc...) rather than supplements because too much potassium can be bad too. It would be easy to overdo it with supplements, but you would have to eat an enormous amount of bananas to get too much potassium.

I have had many episodes due to startles at night: a phone call or an alarm clock will do it. So remove phones and alarm clocks from your bedroom. I use a clock with nature sound at a very low volume and I have no problem.

In a word, just play it safe until you know and try to relax (easier said than done, I know).
You mentioned betablockers, I cannot answer that question, but it is the first line of defense for people with LQTS including borderline patients. So if you are very worried, call your doctor back and tell him about your concern. May be he will be able to get you an earlier appointment.
Good luck and hang in there.
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Elizabeth
Posted on Wednesday, May 17, 2006 - 01:13 am:   

Bionic...thanks for responding so quickly. How do you monitor your potassium levels? I saw on another post that you like to keep it around 5.0 Do you go in for blood tests often? Also, I just read that magnesium supplements may help cardiac patients. Have you found that to be helpful?

My first episode of syncope occured just after the alarm clock went off so we have changed it to soft music....I'm taking the phone out just after I post this.

My kids are only 2 and 7 years old. Will they be able to test them and know about LQT this early? Thanks for the encouragement.
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Bionic Roadrunner
Posted on Wednesday, May 17, 2006 - 04:05 am:   

Hello again, Elizabeth,

I have LQT2 which affect the potassium channel, so it is very important to keep it at a good level (between 4.5 and 5.0). I had a lot of problems 2 years ago and for a while, I had a blood test every three months to make sure that my potassium was at the right level. Now we do it twice a year. My doctor has given me potassium supplements and also magnesium as you mentioned and I have not had any problems in over a year.

Yes, they can test your children even though they are young.
I understand your concern, I have been there, but things will work out. You are lucky that you discovered your problem, this way you can have your children checked too.
Don't hesitate to come back if you have any other questions. Dr Kanters is wonderful at monitoring this forum.
Let us know how you are doing. Best wishes.
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Kim Parker
Posted on Saturday, May 20, 2006 - 07:44 pm:   

My 3 year old daughter just had a Ekg that came back borderline. Her doctor now wants her to see a pediatric cardiologists. Can you please tell me what borderline might mean? We have a week to wait to get into this doctor and we are very concerned?
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Bionic Roadrunner
Posted on Saturday, May 20, 2006 - 09:48 pm:   

A week seems like a long time when you wait...

If you go to the home page of this site, you will see FAQS (Frequently Asked Questions). Click on the following link to get directly to this section and scroll down to get the answer to your question. http://www.qtsyndrome.ch/faq.html

It is difficult to diagnose borderline patients, but since it is usually genetic (although it can be acquired through medicines that prolong the QT), it is a good idea to test the parents of the patient and his/her siblings.
I know you are worried, but know that the best thing that could happen is that your little girl's problem was discovered in time to be treated if necessary.

You can also get information about LQTS at www.sads.org
My best wishes to your little girl.

PS: One of my children is borderline and eventhough she never had any problem, she is on betablockers for prevention.
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Beverly
Posted on Thursday, June 01, 2006 - 03:41 pm:   

My daughter will be 13 in September and has just received the results of her genetic testing showing positive for LQTS Type 1. She has never had any symptoms. She is an active child however she has never been in organized sports of any kind. We just stumbled onto this entire situation due to a routine EKG test which came out borderline. Her doctor wants her to start Beta Blockers, but we are very concerned with current as well as long term side effects for her. We have seen a drop in her QTc after removing caffeine from her diet and are wondering if we can take a more natural path of treatment instead of Beta Blockers. We are so worried and want to make the right decision!
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Bionic Roadrunner
Posted on Thursday, June 01, 2006 - 10:32 pm:   

Here is an excerpt from the site of the SADS foundation guideline on the subject:

"Asymptomatic children and young adults should be treated as well. Some will become symptomatic and sudden death may be the first symptom. Thus, preventative treatment is required, usually with beta-blockers. At least one-third, probably more, of gene carriers never develop symptoms. Unfortunately, we cannot predict with any accuracy which LQTS patient will subsequently have symptoms and which will not. The beta-blocker treatment is very safe and usually well tolerated. Therefore, children, adolescents and young adults at the time of diagnosis should be treated even in the absence of symptoms, since they have an unknown but significant chance of subsequently developing symptoms including sudden death."

I hope this is of some help to clarify the situation of the "borderline" patients. It is a difficult problem to face, knowing that your child may never have symptoms and would be taking medicine for nothing, but on the other hand, she could have only one episode which unfortunately could be the last one while she is not medicated.
This is unfortunately the harsh reality.

I have heard that they are working on trying to figure out what patient will or will not have problems but who knows how long in the future this might happen.

Meanwhile, I am not sure that a "more natural approach" than beta blockers would protect your child. They are the first line of defense against LQTS.

By the way, the whole article can be read at http://www.sads.org/LQTS.html

We have opted for the beta-blockers for our child who is borderline and this gives her and the whole family a greater peace of mind.

My best wishes to your little girl.
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Marci
Posted on Sunday, June 11, 2006 - 06:40 am:   

Hi Beverly,

I've just seen your posting and we're in much the same situation. My husband and 13 year old daughter have both been diagnosed with LQT (probably LQT1 but we don't have the genetic tests back yet) and they're both asymptomatic.

My daughter is on the school basketball team and loves Track & Field. It seems a crime to stop her doing the things she loves and to start medicating her when there's a reasonable chance she'll never have an event her whole life. Nobody in my husband's family suffers with syncope and yet it must have been in the family for generations.

We're just starting her on Nadolol (80mg per day - we want to build up to that over the next two weeks) but are really hesitant about this whole situation.

How do you balance the risks against the life altering suggestions that we medicate her for the rest of her life and stop her sports activities?

We're toying with the idea of only putting her on a half dose to try to reduce the side-effects that so many people talk about with these drugs. We're also nervous about the long term effect of medication over her entire life.

I'm sure you're probably going through the same gut wrenching choices that we are and I'd be happy to chat online or offline if you're interested. We're very torn.

Marci
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Jaskolka77
Username: Jaskolka77

Registered: 09-2006
Posted on Tuesday, September 12, 2006 - 03:22 pm:   

Hello. I just happened across this place yesterday.

Ok, this is going to be a long post, I apologize.

Sometime around the beginning of July, I passed out in my kitched after struggling with a can opener for a good five minutes. It was around 7pm. I had not eaten anything since early that morning (I had a tendency to forget during the day). I sat up almost immediately upon waking up, which was a mistake because I was very close to passing out again. And since the blackness and buzzing in my ears just wouldn't go away (I was still conscious), I ended up taking an ambulance ride to the hospital.

Everything seemed ok, just that my potassium was very low. I was told I would go home that night. Then the ER doctor comes in, scaring my poor mom, saying that I had a prolonged QT on my EKG. Saying that can cause fainting or sudden death. They ended up keeping me overnight for observation, but not before giving me two packets of potassium mixed in orange juice right in the ER.

Now the next day was awful for me, in the fact that no one would tell me anything for the longest time, and I just wanted to go home. Finally they decided to make the diagnosis of vasovagal syncope, and that the prolonged QT was brought on by my very low potassium.

I really don't remember the numbers on any of this stuff. I never thought to ask for them, until I noticed how often I was almost passing out since then.

I never actually saw an electrophysiologist, although I was told that one saw my EKG. IMHO, I was not happy with this hospital at all for many other things. I also know that I have had tests for many things before with nothing conclusive, only to find out years later. I was supposed to have a tilt-table test, but never had it.

I know the last time I almost passed out, I had not eaten the whole day. I had woken up with a really bad headache, then later started freaking out (I've noticed that happens when I almost pass out, or pass out), then later when I got up had to hold onto the wall and watch as things whited out on me. I didn't pass out, but it scared the heck out of me.

I'm almost 30, epileptic, asthmatic, and for the time being hypertensive; medicated for all three. Two years ago, I was over 300 pounds; now I'm under 160 (I'm 5'7", so I guess I'm finally at a normal weight). I had gone off of a medication that was what seemed to make me gain the weight, so everyone (doctors too) assumed that is why I lost the weight (and my appetite). I actually have had LOW blood pressure during and since my time in the hospital (at my last doctor visit, a couple of weeks ago, it was 100/20).

My doctor took me off of the Procardia, leaving me on the Diovan (which might come off too eventually). I'm also on Carbatrol, Dilantin, clonazepam, Prevacid, Advair, and albuterol (PRN). I'm tired of going to doctors, and feel like I am a hypochodriac if I complain about anything. But these almost-passing-out spells scare me. And I do remember the night I passed out and it was awful.

Should I get another opinion? And I'm sorry for the long post.
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Bionic_roadrunner
Username: Bionic_roadrunner

Registered: 08-2006
Posted on Tuesday, September 12, 2006 - 08:21 pm:   

Hello Jaskollka,

Yes, you should get another opinion. Get a photo copy of your EKGs taken in the hospital and lab tests too and make an appointment with an electrophysiologist as soon as you can.

Meanwhile, keep your potassium level up by eating a diet rich in potassium (bananas, potatoes etc...). Feed yourself regularly, don't "forget" to eat, this is not good for you and will really mess up your electrolites levels.

I am not a doctor but I have read enough about LQTS for the last 15 years to tell you that many LQT patients have been first diagnosed as having epilepsy. I am not implying that you have LQTS, but it just adds up to the list of suspicious symptoms (syncopes, low potassium, prolonged QT on last EKG...)

Let us know if you need any more help. Take care and stay well!
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Jaskolka77
Username: Jaskolka77

Registered: 09-2006
Posted on Wednesday, September 13, 2006 - 06:07 pm:   

I am going to be seeing my cardiologist tomorrow (he didn't actually see me in the hospital; he was on vacation, so one of his colleagues did). I had actually forgotten about the appointment until they called me today. I had had a stress test and an echo (separate), called on a Monday to get the results (was told I could cancel my appt. because everything was ok), and the next day was when I passed out. And they told me then to KEEP my appointment.

I'm going to ask him for a referral to an electro-physiologist. NOT the one that did NOT see me (he saw my EKG, but I never saw him personally) however.

This might sound like a really stupid question, but is it possible (if not probable at some point in everyone's life) to have a prolonged QT on an EKG, but not have LQTS? I'm sorry if that sounds stupid.

And I have read about the epilepsy sometimes being a mis-diagnosis. I don't want to even think that though, considering I've had seizures my entire life. My uncle had grand-mal seizures as a child, but outgrew them. That is actually the only history of epilepsy in my family as well.

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