Long QT Syndrome

[Flitter]

Has anyone on this board every heard of Long QT Syndrome? I understand that there is a possibility that a person who has this problem can die without warning. My 6 year old grandson has just been diagnosed with this problem. From what I have read so far I am scared to death about the prognosis.

 

[mrmagicmph]

I'm familiar with prolonged QT intervals. In short, yes, it's something to be aware of and concerned about. NO, it is not something to be scared to death about the prognosis. Make sure that your grandson has a good pediatric cardiologist, follow his/her advice, and everything should be fine.

It is treated, at times, by medications. Othertimes, they will implant something similar to a pacemaker called an implantable cardioverter-defibrillator. Either way, they can and will take care of him.

So, take a deep breath (make it 2 or 3), and take it easy. Things should be just fine.

Any questions, just ask. Enjoy the Magic of WDW!

 

[SueM in MN]

I don't have time to respond right now, but will later today.
I am going to move this to the disABILITIES Community Board since that board is more for non-Disney related questions and I think you will get more views there.

 

[Flitter]

Thanks for the reply Mrmagic. That does put me a bit more at ease because most of the websites I have checked out are not all that optomistic. I will definately pass your reply on to my daughter and hopefully it will also put her more at ease. She cannot get into see the cardiologist until after the first of the year and I'm sure he will be fine, he has been up until now.
Thanks again and MERRY CHRISTMAS!!!

 

[SueM in MN]

There is one good thing about this diagnosis - he has a diagnosis, so there are things they can do to help him not have problems. And, in one story I saw on TV, finding out one child in a family had it meant that they checked the other children and found a brother who also had it - so they were able to treat him too. From what I have read, most of the people who die from long QT syndrome didn't know they had it, so there was no way to prevent it.

Here are a couple of good articles I found:
Long QT in children

a good article from the American Heart Association

and one from CNN

 

[SBubba18]

I'm a 15 year old girl and have long QT syndrome. I found out when I was in 8th grade about it. At the time, I was having a severe asthma attack and they gave me this medicine in the ER, and I sytarted to complain about chest pain. They did an EKG and sure enough, it showed a long QT. After that, I had passing out spells while exercising. I was rushed to the ER one time after passing out, and the EKG showed a right bundle branch block. I went to a cardiologist, and had another EKG done there. That time it showed the long QT instead of the bundle branch block. So I have been aware of it for 2 years now. I go and see a peds cardiologist once a year. They gave us a lot of info on it. Also, your daughter might want to get the rest of the family checked for it because long QT is passed by genetics. There is a chance someone else in the family has it too.

Your grandson will be okay. The cardiologist will just tell your daughter what medication he can and cannot take. Overall, it's not a bad thing to live with. It isn't hard to stay away from medication at all.

This website gives good info about long QT, and it also gives what kind of medication your grandson might not be able to take.
http://www.hrspatients.org/patients/heart_disorders/long_qt_syndrome.asp