SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

My son had just been diagnosed with Long Qt by chance, we went to have an EKG done to rule out a heart murmor and they came across and abnormal EKG indicating borderline Long QT. After an exercise stress test, the results confirmed Long Qt. Our cardiologist has restricted all sports including swimming, until we see an electropsychologist, but said it is okay for him to still play baseball, being the fact that it is not a strenous sport. We do have an appointment with the specialist in 2 weeks, but nervous and unsure about everything. We were totally blown away with the findings. No one that we know of has Long Qt in the family. My son is NOT currently taking any medication, as we have not seen the specialists yet. Am I crazy to let him play ball? Kerri

Our Pediatric Cardiologist described it best when I questioned things of such before my daughter officially was diagnosed - "Do you like to play Russian Roulette?"
Basically all chance. My husband has been diagnosed since 8 years old (now 33). He played minimal sports but by the time he did was old enough to understand his heart and when he needs to take it easy. Never allowed to play football for school, but did it A LOT leisurely - and still does. NOTE: He is on medication, your son is not?!
My daughter has also been diagnosed along with my neice, nephew and their mother (his sister). HIS SISTER was "cleared" every time by EKG's and played ALL the sports, then suddenly went into cardiac arrest in her 30's from a simple GBladder surgery. Now has a Defib in her chest.
ITS ALL CHANCE - might see if he can be on a minimal amount of Atenolol or other drug solution to minimize the risk as my other sister-in-law is still "cleared" but takes it just in case. Basically slows the heart avoiding the risk - my dad takes it for his blood pressure!
Good luck - its stressful, I know!

Thank you, as all of this is new to us.

Hello,

After waiting what felt like was the 2 longest weeks of my life, my son had his appointment with the EP and the EP brought us no immediately releif. He feels that my son is not in any danger at the present time. He feels that given the circumstancs ( no family history of Long qt and no symptoms) that surrounds my son that he may be on the HIGH end of normal. My son's resting Qt was different all 3 times he went to the cardiologist. He had one of 420, 450 and during his exercise test 480. The EP would like my husband and myself to have an EKG and than review them himself. My daughter just had one and came back normal. I have read several times that an EKG showed an normal QT and it was the genetic testing that showed differently. The EP also said that the genetic testing was only 70% accurate. I am so unsure of what to do. I would hate to change my son's life, but than again I would be devasted with the other outcome. I do have a second opion with another EP in 3 weeks. But in the meantime, chomping at the bit. I was wondering if anyone in your family ever tested positive for Long qt, before your husband was diagnosed and if not have you ever heard of anyone in my situation?

Thank you.

My 15 yo daughter was just recently diagnosed with long qt. Her high school performed ekg's on all of the freshman at the end of the school year. Thank goodness they did this! Our speciallist told me that she can still be active, but I am scared to death. She is bored out of her mind and mad at me for not allowing her to do anything fun. We are doing genetic testing and the whole nine yards. The specialist also told me that if I wanted, I could take her to see Dr. Ackerman at the Mayo clinic who is supposed to be the leading expert on this syndrome. Has anyone out there seen Dr. Ackerman? Should I follow the doctors orders and let her have some fun or should I go straight to the expert. Please note that our specialist is one of the top doctors at Childrens Memorial Hospital in Chicago and also specializes in this, so she is in good hands. I am just so confused! Help!

I totally understand your frustration. We are allowing our son to be active to a certain extent unitl we get a second opinion. I just purchased the heartstart home defibrillator, by Phillips. Not that it will solve our problems, but until the doctors can come agree on something, I feel a little bit better letting him be a kid. Good luck and be strong!