| Author | Message | ||
     Nancy Username: Nancy Registered: 11-2006 |
chris was 27 years old, when he was a baby he kept having seazures, docs put him on phena barbital.then at 18 he started having rapid heartbeat and dizziness. a month before he died he was hospitalized for the fastest heartbeat the hosp said they had ever seen. he was put on blood pressure meds and heta blockers. a month later he layed down for a nap before his wife got home from work. she found him dead when she got home. atopsy said cardiac arrithmia, so when i started looking this up all i found was lqs . what do you think? i have been tested and they say i dont have it. | ||
| Debbie Username: Debbie Registered: 11-2006 |
I'm so sorry to hear about your son Chris this story is all to familar. I lost my 22 year old niece 4 years ago and her mother (my sister) was misdiagnosed with eplipcy. She also was on phena barbital. It took the death of her daugther to find out that she had lqt. She has a diffib now. It maynot have come from your side of the family it could be from his fathers. Sometimes it hard to diagnose what tests have you had done? I have shown symptoms but has only showed boarderline. Again I'm so sorry about your son. | ||
| Diane Username: Diane Registered: 11-2006 |
Nancy, Sorry to hear about your son Chris. It is worth investigating to give you some peace. Debbie, Are you being treated with your borderline long qt. I am still waiting for diagnosis on my 9 year old who has shown borderline. | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Nancy, I am very sorry about your son, but you may have to come to peace with the idea that if your family has been tested for LQTS and no one shows anything, you may never find out what happened to your son. This is very sad, but there are different causes of sudden cardiac death and often, autopsies do not reveal any problem. You must make sure,like Debbie said, that both sides of the family have been checked and you should try to find more about the medical history of the last two or three generations: was there any history of heart problems, sudden cardiac death, epilepsy, seizures of any kind? I hope you find some answers. Know that every body on this website understands what you are going through... | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Debbie and Diane, I understand (from my doctor and all the litterature I have been able to find on LQTS), that is is most prudent to treat borderline patients. The reason is that at this point, no one can tell who will develop problems and who will not. Beta blockers should be administered by the doctor if the patient tolerates them. One of my children was diagnosed as borderline after I was myself diagnosed with LQTS and right away the cardiologist put her on betablockers. For patients after 40 who have never shown any symptoms, it is less problematic than for younger one, but each case should be carefully evaluated. Best wishes to all. | ||
| Diane Username: Diane Registered: 11-2006 |
I have been reading that Borderline QTs can go significantly higher during exercise ECGs. I am starting to get very impatient waiting for the ped cardiologist to do these tests especially since one child has already had a cardiac arrest (he is now fine). Should I demand that he be seen right away. | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Yes, Nancy, I would push for the doctor to test your son. I am surprised that with a sibling that had cardiac arrest the physician has not moved faster towards finding a firm diagnosis. If you are not satisfied with him, seek another opinion, make sure that the doctor is an electrophysiologist. Ask if your son should be on betablockers while waiting, it seems it is better to err on the side of safety in this case. I am not sure, but unless his heart is too slow already, this medicine should not hurt him, but only offer protection and more peace of mind. It will not hurt to ask. The SADS foundation at www.sads.org could help you find a doctor in your area if you have problems doing so. Remember, I am not a doctor, but I am very concerned about doctors still not being energetic enough in their decision making when it comes to a disease like LQTS with such deadly outcome. Take care and hang in there. It is hard for the Mom (and Dad), I know... | ||
| Diane Username: Diane Registered: 11-2006 |
The doctor said that they don't want to put him on betas until after the testing is done or the tests won't reveal properly. I am getting frustrated. I have already talked to sads and they were very helpful and gave me loads of info. Thanks, Diane | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
It is true that the betablocker will change the results of the test, but why don't you talk to your pharmacist and ask him how long before the test your son should stop taking the beta blocker in order to obtain an accurate result? Of course you need to make sure that it would not negatively affect your son, but it is worth the question. | ||
| Debbie Username: Debbie Registered: 11-2006 |
diane I got put on a beta block topril xl I take one pill 50 mg once a day. My doctor won't put a defib unless my ekg shows more then boarderline or when or if they find the gene. so far no luck with that mayo clinic cant find it. But are still looking. My doctor also told me to live my life as though I have it. Don't get dehydrated and don't take any meds unless oked by him. Especially cold medicines. If your not happy with this doctor or think that he isn't taking this seriously find another doctor who will. |