We would like to hear from members dealing with long qt in their babies and toddlers. Our 13 month old girl has just been diagnosed and any words of wisdom and support would be greatly appreciated!!
We would like to hear from members dealing with long qt in their babies and toddlers. Our 13 month old girl has just been diagnosed and any words of wisdom and support would be greatly appreciated!!
My son was diagnosed (although not conclusively) when he was 6 months old. You are very lucky to know at such an early age, many teens go through a terrible time when they have to suddenly deal with this issue. My advice is to find good Dr.s that you trust and who won't sugar coat things and to have everyone who is willing take CPR. It is easy to learn and it just might save someone's life.
Do you know what type she is? How was she diagnosed?
Best of Luck
Meghan
We don't know what type she has yet. Her genetic testing will be done in the next couple of weeks. We think it may be Type 2 because of the shape of the T wave on her EKG.
She was diagnosed as a result of an EKG that was done as a follow up for another problem. She had PACs before she was born, so a couple of days after she was born, an echo and an EKG were done. She had a "borderline QT" interval then. We went for the follow-up a year later and a cardiologist at Children's Hospital of Philadelphia quickly made the diagnosis and had her admitted to the hospital to start Inderal. She also has a small atrial aneurysm where the foramen didn't close correctly, but we are told that this will very likely correct on its own.
So we are all trying to figure this out and put it into some kind of perspective so that we can live with it without constant fear and so we can have her live a normal life without letting our fear affect her. Easier said than done.
We are monitoring her at night with a pulse ox machine with heart rate alarms. Since half of her day is sleep and naps, this has set my mind at ease, but her mom is having a hard time with the idea of the machine at all.
We are also dealing with the fact that we may have it as well. Her mom, my sister was told yesterday that her EKG was "abnormal" and I have also been told I have a long QT. My duaghter and sons will have EKGs also.
How old is your little guy now? Has he had any episodes? What type does he have? Is he on medication?
Thanks so much for your support!
My 9 year old daughter has lqt. She has it since birth.She got a pacemaker when she was 6 days old.Two years back she got the defibrillator.Genetic Testing was done on her twice everything came normal doctor thinks she has type 3 sodium channel blockage qt interval is still long .61 after all the medication's use to take kcl solution but it was stopped when she got the defibrillator.When she was a baby we used to see the doctor every week and than every month and now every six months. She seems to be doing OK. She was taking liquids every six hours a day but starting this year she started taking pills just twice a day. She is taking Indral.Spironolactone and Dilantin. She is a very active 4th grader girl who does not give up.She is pure joy .If you want to ask me anything I will be more than happy to answer them for you.
Take care
Hi,
Thanks for your questions. Both my boys (now 3 and 5) are doing great! both on propanolol and doing just fine. I have also been diagnosed as well as my sister and father. So far we are asymptomatic, thank God. We have gotten used to the idea of having this in the family and are at peace with it. Hope all goes well with you!
Meghan
Thanks to everyone for the information and support!
my daugher, hannah, was born via emergent c-sect secondary to decreased fht, upon birth, found to have long qt, subsequentially at day 2 she had a pacemaker implanted and started on propranolol and mexilitine. tid.she tested positive for long qt 3. we {the doc} stopped propranolol on a ween down phase and it was stopped. she had no ekg changes at all and is on mexilitine tid now with a pacemaker in place. she is now almost two and all checkups have been great
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