| Author | Message | ||
     Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hello Alicia, I am very happy I could help. Yes I am in the US. I did not use a genetic testing company. I was lucky enough to be part of a research study when very little was known about LQTS. Later on they were able to include my children in the study. You may want to consult a geneticist and also an LQTS specialist like Dr Michael Ackerman at the Mayo Clinic in Rochester Minnesota. http://www.mayoclinic.org/bio/10494715.html I have met him and he is a very nice man, very willing to help. Let me know if I can help in any other way. I know your decision is a very hard one to make. Best wishes to you and your husband. | ||
| Alicia Costa Username: Alicia_costa Registered: 08-2008 |
Dear Bionic Roadrunner, Thank you so much for providing the link for this interesting article. My husband and I have been discussing our options for quite some time. All input will help us reach this difficult decission. Are you in the US? If so, what company did you use for the genetic testing? Best to you, Alicia Costa | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hi Alicia, The following article might answer some of your questions. Remember that no one individual reacts the same way as another, so although a study will give you a general idea, it will not absolutely tell you what will happen in your particular case. http://www.sads.org/index.php/General/Pregnancy.html I have had two pregnancies (I did not know then that I had LQTS) and never experienced any problem. However, one of my children has LQTS and the other does not. This was discovered only when I started having serious problems years later and both children were tested. Certain patients are at higher risks than others and if you have been genetically tested, there are certain markers on your LQT that a doctor can base their assumption on. My best wishes to you. | ||
| Alicia Costa Username: Alicia_costa Registered: 08-2008 |
Hello, I wonder if there are any studies I could read regarding the postpartum events of QT patients who are recieving the proper postpartum treatment? (ie: a beta blocker and ICD/pacemaker) I have my ICD/pacemaker, take nadolol and thank God I have not had an event since before I became a bionic woman. So what are my chances if we decide to have a baby of our own? Please let me know if you are aware of any such information. Thank you for your help in advance. And thank you for this wonderful site. Best, Alicia Costa sweetmapledog@msn.com | ||
| Jesenia_t Username: Jesenia_t Registered: 04-2008 |
Hi Diane, Here is a link to a study that was done with the use of Propanolol in animal testing. This drug is labeled as a Pregnancy Class C, which means there has not been large test studies conducted with humans and it is only given when the benefits out way the risk. I work in labor and delivery right now and we have always been told that during pregnancy is not when you worry about the QT interval in mothers with LQTS but up to one year post-partum. Ultimately, it is your decision on medications you choose to take during pregnancy; just remember if you do not take care of you then baby suffers anyway. I have known mothers that have done both and had wonderful births. Hope this helps. http://www.rxlist.com/cgi/generic/propran_wcp.htm | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hi Diane, I was hoping someone would answer your question yesterday, but this website has been very quiet lately... I have been to a conference on LQTS where the question of betablockers and pregnancy came up and I think that they are fairly safe, but I seem to remember that one of them was better than the other. Don't take my word for it, but I think it was Atenolol. Check with your doctor. From what I understand, you must absolutely be on betablockers during the postpartum period of around one year. This is when you would be at the highest risk because of hormone changes and stress due to the baby. Take care and best wishes | ||
| Diane Username: Diane Registered: 04-2008 |
Hi I have recently been diagnosed with LQT2 (hERG)and my qtc is 480. I am planning on having a family, Should I continue with beta-blocker Propranolol, is it safe ? My younger sister died age 19 years post postpartum at 11 months, but she was wrongly diagnosed, since then my other sister has a ICD fitted since 13 years, she was having same symptoms as my sister that died. All advice appreciated. |