Another question for EmilyH

Hi Emily,

We are still trying to diagnose our family with Long QT Syndrome. We have all had ECGs and Exercise Tests. Our QT intervals are all Borderline. Mine is actually below the borderline but the doctor said that it shortens with age sometimes. The kids are scheduled for Adrenaline Challenge Tests in Calgary. What can you tell me about this test. Is it risky? The doctors have said that it is necessary because the risk of Long QT Syndrome is so great. Also Steven, the 9 year old, has Junctional Escape Rhythms during his standing, hyperventiation, and recovery ECGs. They said that this could interfere with his treatment. Are these rhythms common in children while they are awake. The doctor said that they usually only happen in children while they are sleeping.

Any info would be greatly appreciated.

Thanks,

Stevie

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Hi Stevie,

I'm sorry you are still having to go through this, it must be such an anxious time for you.

I'm afraid I don't really have the knowledge or experience to answer your questions in detail - it is a quite specialised area of cardiology. I know the Adrenaline Challenge Test is used to try to unmask ECG abnormalities in those in whom the resting ECG is borderline - as it is being used to provoke arrhythmias, there is a small risk of provoking a dangerous arrhythmia. However, remember it is done under full monitoring with a team of doctors present, so any dangerous arrhythmia can be treated and dealt with straight away. Thus overall it is a pretty safe procedure - and certainly less dangerous than having undiagnosed Long QT.

As for your question about Junctional Escape Rhythms, I'm afraid I have no experience of these in children, and the information I can find in textbooks and on the internet just seems to suggest what you've already been told - that they usually occur most frequently during sleep.

I'm sorry I can't be more helpful, but I urge you to discuss all your worries with your cardiologist - you have a right to full information regarding the risks, benefits and indications for any test before you consent to having it done.

You and your family will be in my thoughts, and I hope all the tests go well.

Em H

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Thanks a million EmilyH,

I have been a nervous wreck for the past several weeks. It takes so long in Canada to get in to see a specialist. Our new cardiologist is doing her best to get things moving quickly. I will be sure to ask her all my questions when I talk to her next. Don has also been pretty anxious lately about the treatment affecting his asthma. He has had a few bad attacks lately. He has been told to keep his ventolin use to a minimum right now and I think he is worrying so much about not using it that he seems to need it more. They have upped his flovent beyond the max daily just to keep things under control right now. I have been thinking of everyone here and have checked up every few days just to see how everyone is doing.

Thanks again,

Stevie

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Stevie

i dont know if this will help but there is a very good web site thats british :- c-r-y.org.uk/

I lost one of my sisters to Sudden Adult death last year and they have been brilliant at answering questions and the web site is very informative. I was tested for a various assortment of cardiac probs and luckikly am in the clear except for an erratic heart rate(down to asthma meds they think)

I understand this must be a tough time for you and your family and you are in my. thoughts

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Sorry to hear about your sister. I am glad that you are finding help from CRY. I have been in contact with SADS in Canada and they have been great for our family. I have visited the CRY website before and it is very good as well.

Thanks,

Stevie