| Author | Message | ||
     ScaredMom Username: Scaredmom Registered: 07-2007 |
Hi my name is Sarah and I am newly reigister here. I googled information pertaining to prolonged QTC and this site came up. My son had an EKG done on July 13th and on Monday, his pediatrician called and said he has an irregular heartbeat and needs to be seen by a cardiologist. The appointment is for July 27th. Then Tuesday we went to the doc(psychiatrist) that ordered the EKG along with an EEG and then was told that it was prolonged QTC. The tests were ordered because he is in the process of neurological testing for numerous reasons, behavioral reason mainly. So, with that, my question is what is this? What causes this? What possible treatments/risks are there? Any and all information would be greatly appreciated. Thanks, Scared Mom | ||
| Debbie Username: Debbie Registered: 11-2006 |
Hi Sara, Long Qt syndrome electrical delay in the heart it is measured between the Q and the T. It is genetic but it can also be caused by some medications. I have it in my family my sister had a pacemaker put in a year after she lost her 22 year old daughter. My sister was misdiagnosed for epilpcy which is commin. Has your son ever said that he is dizzy or has passed out? Or do you know if any family member died suddenly with unknown cause of death. I don't want to scare you but your son needs to see a cardiologist someone that specialies in long Qt. There is also to a website that has a list of drugs that prolong the Qt that people with this syndrome have to avoid. If you have anymore questions or would like to e-mail me feel free to. This message board has quited down alot lately which is to bad. Good luck to you Debbie Email address Debcap2414@jvlnet.comm | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hello Sarah, Since you mentioned that your son had behavioral problems, may I ask if he was put on any kind of drugs like Ritalin, Strattera, Focalin, Dexadrin, Concerta or Aderall? These drugs are on the list of drugs which can prolong the QT. So, his prolong QT could have been caused by one of these drugs, or if it is congenital, he should not be on any of them and many others for that matter. Here is the site for the list www.qtdrugs.org If it is congenital, your entire family should be tested. Usually, the patients are treated with betablockers. If they do not respond to the therapy, they will usually get a defibrillator sometimes a pacemaker. For more information on LQTS, go to www.sads.org This site you are on also has a lot of great info on it. Go to the home section or directly to www.qtsyndrome.ch Good luck and best wishes. Don't hesitate to ask more questions if needed. | ||
| ScaredMom Username: Scaredmom Registered: 07-2007 |
Debbie, I dont recall anytime that he has passed out nor do I recall anytime that he said he was dizzy. As far as family members, I only know my biological mother's history and part of my son's biological father. So, I really dont know. He does see the cardiologist on Friday July 27th. Bionic, we are jsut gettign the testing started for behavioral issues, which is how we found this out. He had to have an EEG and an EKG done before they would do anything. He has not been on anything other than antibiotics, Tylenol/Motrin, or Benadryl. I do not want to medicate him for behavioral issues. | ||
| ScaredMom Username: Scaredmom Registered: 07-2007 |
Debbie, I dont recall anytime that he has passed out nor do I recall anytime that he said he was dizzy. As far as family members, I only know my biological mother's history and part of my son's biological father. So, I really dont know. He does see the cardiologist on Friday July 27th. Bionic, we are jsut gettign the testing started for behavioral issues, which is how we found this out. He had to have an EEG and an EKG done before they would do anything. He has not been on anything other than antibiotics, Tylenol/Motrin, or Benadryl. I do not want to medicate him for behavioral issues. | ||
| ScaredMom Username: Scaredmom Registered: 07-2007 |
Sorry about the double post. | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Sarah, I hope you find an answer very soon! Even if there is no history of heart problem in your family, there is also the possibility of gene mutation (in my case, I have a mutation, which I passed on to one of my children). Try to inform yourself as much as you can. The more you know, the better prepared you will be to understand the problem and help your son. Again, best wishes. | ||
| ScaredMom Username: Scaredmom Registered: 07-2007 |
Thanks. I did read all the sites that were listed and I am more terrified now, then I was before. I know that my bio grandfather had 3 major heart attacks, my mom had a heart attack last year and my uncle died last year of a heart attack. So I that much I know. I guess I wont know anything until we see the cardiologist on July 27th. I have taken meds that are on the list. Do I need to demand that my PCP send me to get a full cardio eval done? Should I wait until after we see the cardiologist on the 27th? Sarah | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Sarah, Long Qt syndrome is not curable, but treatable. It is is a case when knowledge is most important: if you know you have it, you can control it. Since your doctor knows there is a chance your son may have it, he will take the necessary steps. The good thing is that your son has never had any symptom so try not to worry to much before you know more about his case. Do not worry about having taken medications on the QT drugs list if you had no problem with them. Your son's cardiologist will tell you whether there is reason or not to test you and your family. My best wishes. | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Sarah, as a mother I do understand your fears and worries, and I should have added that there is something positive in your story: you have discovered the problem, so at least you have a chance to treat it and protect your son. Hang on to the thought that many people are living very active and healthy life with LQTS. Best regards. | ||
| ScaredMom Username: Scaredmom Registered: 07-2007 |
Just wanted to let you all know that everything turned out to be fine. He just needs to have EKGs done once a year now. Thank you for all the information. | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Glad to hear all is well, Sarah. Thanks for the update! | ||
| Joshi2007 Username: Joshi2007 Registered: 11-2007 |
We just found out that our son has broderline prolongued QT, he is only 3 months old and already has svt since birth. He is on medication fo SVT, taking 0.7 mg of digoxin every 12 hrs. His cardiologist said that there was nothing to worry about, his level was 450 while the normal one is 440. The cardiologist won't do another ECG until he is 6 months. We read about LQT, and we are concerned and need more reassurance that he is not at risk. His doctor said to wait a year, because it sometimes goes away...We are just needing to be in touch with people who has had the same experience with babies | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hi Joshi, I will try to help you as much as possible, but I am not a doctor. I am only talking by experience with my own long QT. First, you mentioned that your baby was seen by a cardiologist. Is this cardiologist an "electrophysiologist" (cardiologist who specializes in the elecrical system of the heart)? If not, you may want to consult one. They are usually better informed than regular cardiologists about LQTS. Secondly, I have never heard that sometimes LQT goes away unless it was acquired (usually by taking medicine which prolongs the QT). You have it or you don't. The problem with long QT is that it may show on one ECG and not on the other. It changes all the time. This is why it is even harder to diagnose in the borderline cases and those patients should be treated as any other, usually with beta-blockers. I was wondering about the drug "digoxin". I never heard of it being given for LQTS. But again, I am just a patient, not a doctor... Has your doctor suggested that both you and your husband and any other child be tested for LQT also? This usually runs in families. Is there any history of sudden death, or fainting in your family? Should your child be treated for any ailment like a cold or anyhting else, please consult the official list of drugs that may prolong the QT at www.qtdrugs.org These drugs should be avoided. I am sorry, I have no experience with babies with LQTs. My daughter was diagnosed when she was in her early twenties through genetic testing and put on betablockers right away. If you need more info, you can always check this site www.sads.org They might be able to help you find an electrophysiologist in your area if you need one. Remember that a second opinion never hurts. I hope this has help you a little. Know that most people do very well on betablockers. It is the drug of choice for LQTS. Let me know if you need anything else. My best wishes to you and your little one. Take care |