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Borderline Long QT-what activity should be allowed.

Myprecious3
1 Recommendation

Hello,

My 7yr old daughter was diagnosed this past April with "Borderline" long qt. It has been the most overwhelming time in our lives learning, worrying over this etc etc. She had fainted out of no where mid-April after being in the bathtub. Her ped had tests run (EKG, xray, bloodwork). The EKG showed the prolonged qt waves, and so she referred her to a pediatric cardiologist (2 hrs away). Her numbers are 460 and 468 on a different day. All together she has had 3 EKG's ran, and 2 of the 3 showed this - The 3rd looked normal. She wore a Holter Moniter early on, and it came back showing nothing. The ped card also did an echo and it looked great. After the Ped Cardiologist visit, he put her on a month long heart monitor (non-looping-I think this means this is the one where she would push a button if she felt dizzy, chest discomfort etc. She pushed a few times and I wonder if more than anything it was her being extra cautious, which is fine, but we will find out next week when we go back to him for a followup.

My biggest concern is whether or not I should allow her to be active. She wants to swim so badly on our local swim club (her brother has done this for 5 yrs), as well as she wants to do other activities (basketball, softball, gymnastics..you name it, she wants it). The ped cardiologist said at the end of our 1st appt, "Let her be a kid Mom"....and to just make sure she is hydrated, her salt intake is adequate etc.

I want nothing more than to let her be a "kid", but there is this area of huge concern I have as her mother that I have to protect her. He said there are children that leave his office weekly where he is overly concerned and he will lose sleep over them...and she is not one of them. It is reassuring to me to hear that, but I want be more than sure she is okay???!!!

Has any one ever been thru this same gray area of being borderline? And if so, what was part of your physical activity, or your child's?

Thanks for any advice to this worrying Mommy.

19 replies

momo3hods

I have never heard of borderline QT. You either have it or you don't. I have QT2 as do my daughter and brother, so one of my parents must have it too (will find out soon from genetic testing). If you are unsure as to whether she has it, I would go the genetic testing route to be sure or get a second opinion...
EKGs can be normal, I have had a few 'normal' ones myself but passed out last August while driving and subsequently found out my diagnosis then my family members' too. My daughter is asymptomatic now (at 7) but is on beta blockers as a preventative. She is a normal kid with the "no competitive sports" limitation. If she has an episode, she will have an ICD placed like me. My brother is also asymptomatic and on beta blockers too.

I would definately get a definitive diagnosis for your daughter so you can get her treated properly. Hang in there!!

Myprecious3

Thanks for replying so quickly! :)
If you do a google search of borderline qt, you will see plenty of links relating to this...one website in particular that comes to mind is qtsyndrome.ch (not sure I can link it on here, so I apologize if I've gone against any rules :) I think one falls in this catagory if your milliseconds are b/t 2 "numbers" ( 450 -470 maybe?)

It's an ongoing learning situation for me...I hope to get more definite answers next week from her pediatric cardiologist. He initially said it was not necessary to test the family b/c there is no history of early death or close drownings etc. It may be an aquired case of it b/c she has been on many meds since she was 3 yrs old (asthma/allergies etc)- that is just my assumption but I am definitely no doctor.

thanks again for your info!!

Tara1

My daughter is 16 and her story is very similar to your daughter's. Initially a ped cardiologist used the term borderline, but once we got to an electrophysiologist/cardiologist he said you can't have it a little bit, you have it or you don't and she does. Thankfully, she is asymptomatic and has been given no restrictions (she plays varsity field hockey and lacrosse). She is on a betablocker and we have been told after many tests, that she is a very low risk. We have had genetic testing done, and she does not have one of the known markers. She has also been told to stay hydrated and up her salt intake. Just this weekend she fainted, but the dr. believes it is the hydration issue not the long QT. Certainly, this is what I want to hear, but like you, as a mother I am worried. I have made an appt. for a second opinion at Rochester Medical Center. Good luck to you and your daughter.

flowerpot

Hi there,

I too have a borderline QT interval and understand your worry.

My EP and Cardiologist say I dont have LQTS, but they dont back this up or offer any explanation for the symptoms I have.

I am hoping to get a second opinion soon so that I can be reassured there is nothing to worry about or at least get the correct treatment.

I must admit I worry about my daughters activity levels, even though I'm the one with the arrhythmia issues. This is because we are still in the early stages of diagnosis and treatment for me, and have not yet been seen by a genetics counsellor. (not easily accessible in the UK)

Personally, unless your daughter is at least taking betablockers, I would try to manage (and quietly limit...) the type of physical activity she takes part in for the short term.

Kind regards
flowerpot

karenb1

I have to second flowerpot's final piece of advice. Whether she fainted as a result of poor hydration or long qt cannot be determined retrospectively. I have a related condition and no genetic markers - many with similar conditions have no (identified) markers - the only way to diagnose is a stress test or 24 hr ECG and it to be read by an experienced cardiologist to identify long qt or a similar condition. Then it needs treating adequately.
Karen

karenb1

Myprecious3,
Perhaps you could try allowing your daughter to be active, but keep a close eye on her, inform her swim coach to keep a close eye too and tell her that if she starts to feel 'funny' dizzy, faint, heart beating very fast then she should take a break and tell someone.
Let her be a kid, but stay safe too...
Karen

camsdad

Hello,

My name is Mark and my 7 year old son is Cameron. On March 26th my wife Rebecca and I found our son in cardiac arrest in his bed. This is with out any notice or prior problems. Luckily I went in to wake him up when I did, or who knows what the out come would be. Today he acting like nothing happened. He was in the Hospital for nearly 1 month. He had open heart surgery to implant an ICD (Had to crack his chest). He is on a beta blocker and doing well. The worst part is that we figure that he was down for at least 12 minutes and maybe longer!! (Amen to Golisano's Children hospital for doing experimental hypothermia treatment) He has no loss of brain function at all. He is completely normal, a miracle by all standards. While we want Cameron to be a normal kid, we also know that he is special and needs to be treated that way. We let him be a kid and have fun, but we limit his sports. No contact or competative sports at all. We are going to start a soccer league for kids like him. I league just for kids to have fun kicking the ball around, non competative. Just to have fun.

What I am trying to get at is this, don't take no for an answer. Get that second opinion. Insist on a beta blocker, insist on a cardiologist. Come to Rochester and see Dr Meagher. All the true studies I have seen, there is no borderline. Its either you have it or not. LQTS is way to explosive to be borderline.

I would be happy to talk to you, one on one. Feel free to email me mknowles1@rochester.rr.com

Mark Knowles

zackenna

Hello, my 8 year old son has just been diagnosed with the same, borderline long qt and we found it by chance. Our family ped. referred us to a cardiologist to have a check up to rule out a heart murmur which he has had since birth, the doctor told us the murmur was innocent, but had asked us if we ever heard of long qt.,(showed up on and EKG) which we had not. At that time he did not restrict him from anything, but we had to come back in a month. After another EKG, it showed the same. He then ordered a stress (exercise) test and had him wear a haltar monitor. The haltar monitor was good, but the stress test indicated that under strenuous exercise his numbers went up, to .480, which at that point he had him stop all sports: football, basketball, swimming (socially) until we see an electrophsychologist which we have an appointment on 7/3/08. I totally understand your stress and frustration telling an 8-year old who loves sports and is very active is heartbreaking. Although, we do feel very fortunate to have found this before something tragic happend. We have no history of Long qt, that we know of, but will now all be check and hoping the doctor can shine some light on this when we go for our appointment. If your doctor has not ordered a stress test, I would request one. We were totally shocked with the results. Good Luck.

zackenna

Hello,

I was wondering what your daughters numbers were? Being the fact that we have not seen the specialist yet, we do not know what is an acceptable qt . I have tried to google and find out, but did not come across any information in reference to that.
Thanks.

heartfelt1

Tara,

My 16 year old daughter is getting this diagnosis also, and is asypmtomatic. She has been told no competitive sports. Can I ask you, was it an EP that gave your daughter the GREEN light for sports? Can you explain further? I am wondering why some kids can and some cannot. Maybe it has to do with their QT numbers? Thanks.

Tara1

Hi Heartfelt,
Yes, it was an EP/cardiologist from Columbia University Medical Center. My daughter is asymptomatic, we have no family history, and her numbers are at the highest 484. From what I understand, over 500 is another story. Recently her genetic screening came back negative which was another positive factor in concluding that she is very low risk. She has had a stress test and her numbers did not increase which is another positive factor for her being allowed no restrictions. As a mother, I still worry of course, and took her to University of Rochester Medical Center where Dr. Moss who is one of the two doctors who identified Long Q-T Syndrome over 20 years ago, still continues to do research. He doesn't see patients but, the doctors who work with him do. We saw Dr. Daubert who was wonderful and he gave my daughter a definite green light to go ahead with no restrictions. She will continue to take the betablocker as a precaution. He actually feels she may not have Long Q-T but, just may be a person who runs slightly long... As I said, she will continue to take the betablocker as a precaution and will be followed up yearly with her EP/Cardiologist. Hope this helps! Feel free to contact me with any other questions. I have also had contact with Dr. Michael Ackerman from the Mayo Clinic who is also doing ongoing research into Long Q-T. It's so important to get the best information possible because it is not a totally definitive diagnosis in some cases.

MeghanDA

Hi Myprecious3,
I just wanted to respond because we are going through a very similar situation with our children. My 6 year old had an ECG done when he was first born (for other reasons) and we were told for years that he had borderline Long QT. I understand that "borderline" means that the numbers are in the "grey area" indicating that a person may or may not have the condition. A conclusive diagnosis can only be made by looking at other test results combined with family history or by genetic screening. Because we had no family history of fainting, cardiac arrest etc. and my son is asymptomatic, we were told we were "borderline" and that the genetic test would probably not be of much use. However, 2 years ago we moved to Canada and we able to get the genetic tests done for free thanks to nationalized health care. I was shocked to hear that there is no "borderline Long QT", only diagnosed and not-diagnosed. I was also shocked to find out through genetic testing that my 6 year old, my 3 year old son, my sister, my father and myself are all positive for Long QT. I have had normal ECGs and for years Dr.s told me I was not at risk. Luckily we are all asymptomatic, but all on beta blockers just in case. The biggest challenge has been how to deal with physical activity and what's ok or not. All the Dr.s so far have said that competitive swimming is a big risk, so are definitely avoiding that with the kids. Also, we were told to avoid anything that could cause you to be seriously maimed if you passed out right in the middle of it (competitive skiing, extreme rock climbing kinds of things). Right now we are letting my 6 year old do all the other normal stuff as long as there is someone who knows about his condition and is certified in CPR with him. My husband and I are both certified and I am going to request that his teachers in elementary school be certified as well (why they don't have all elementary school teachers take CPR I don't know, all preschools must have someone on staff that has taken CPR/first aid). In the future we will probably try to interest the kids in physical activities that are less intense. We have all been asymptomatic and my sister and I still do our fair share of physical stuff (my sister is a long-distance cyclist and I dance the Can-can). I guess, the bottom line is that without a positive genetic screening, you may never know for sure. So until that point, I would treat her as though she has Long-QT. If your son is very active I would make sure that the Dr.s screen him thoroughly too. Long-QT is almost always inherited so chances are very good that if your daughter has it, other family members have it too. One ECG is not enough to rule it out, I learned that after five years of being told that I didn't have it. I hope this helps! Give yourself and your daughter time to digest what this might mean for her future. It can be so hard to understand the diagnosis and even harder to decide what to do about it. Things do get easier as you get used to the idea of having to be just a little more careful some of the time. Good luck and God bless!
Meghan

BeccaAnn

My son was diagnosed with borderline LQT yesterday. He is 10 years old and plays tackle football. Last year during football practice, he passed out twice and was taken by ambulance to the hospital and had tests made, but we were never given any specific answer as to why this happened. We were told to keep him hydrated and he continued throughout the season without another episode.

He just started football practice again this year and has had another fainting issue. We knew we had to get a reason why this was happening and we were sent to a ped cardiologist. His tests showed that he is borderline LQT and we are to have a stress test done in a few weeks with one of the nation's specialists of LQT...Dr. McCormick in Tampa, FL. We were told that he can not even break a sweat until further notice.

missie

My son is 6yrs old and was sent to have a ekg today by is doctor because he heard for the first time a gallop while listening to his heart, so i took him to have a ekg done and i looked at the ekg has it was being done and it read normal sinus rythm and then borderline prolong qt not knowing what that was and being told that i have to wait 48 hours to hear the results. i came home and looked up to see what this borderline Prolonged qt meant and when i did i cried, im so scared and confused waiting to hear from the doctor. this is the first time i have even heard he had a problem and he has been with the same docotr his whole life. we have no family history of this and no symptoms my question is im just wanting to know if i should be worried or not? Can someone help me please?

heartfelt1

Missie,

I am new to this board also. We also had an EKG on a fluke and was found to be borderline. I would try not panic. Wait for the interpretation - it will probably be fine. If it's "abnormal" , make sure you get to an expert. There is lots of subjectivity to reading EKGs. Without a family history and in the absence of symptoms, a borderline EKG is probably nothing to worry about. Hang in there.

DrD11

The question about allowable sport activity in "Borderline Long Q-T " is a source for dual apprehension:Not only,the person is not told if he has
a problem,in first place,he,also not told what to do about it, in a second place. Living in continous fear is
difficult and unimaginble to any one.
So far,nobody is told,what exactly should be done,in any circumstances,prior to taking part in sport activity.
Implanting defibrilltors and monitors,is not the answer
for everybody."Secondary Long Q-T",should always kept in mind.(Secondary to Channelopathy,certain
medication intake etc.).Detecting such abberation in
the right time,is what I am talking about.We need action in this matter.

missie

heartfelt1,
i just wanted to thank you SO very much for your kind words. I got the results back and thank goodness the cardiologist and his doctors said his numbers were good! i questioned what i read on the ekg and was told that i could of been a fluke and all the numbers are were they should be i just wanted to thank you!!

hanora

Hi,
My son has experienced about a dozen episodes of dizziness and 3 faints in a period of 18 days. Initial ecg showed a borderline qt of between 470. Subsequent qt intervals were shorter. Having undergone numerous tests,epilepsy has been ruled out. He is on betablockers and will undergo genetic testing in the coming months. Intense physical activity is prohibited and he is to avoid situations that may give rise to anger, excitement or other strong emotions as these may trigger other events.

I wonder if there is anyone else out there who has had similar experiences with this condition - can people experience dizziness, shortness of breath, blurred vision and numbness in the legs and not actually faint with this syndrome? Could the doctors be mistaken in diagnosing such a serious condition?

LQT2Wendy

My sister and 3 nephews are all borderline .... that means they have the longer QT interval, but they do not show the gene when genetic testing is done ...........

Use your common sense, research triggers of LongQT ..... know them avoid them ...... keep in touch wiht the pediacardiologist who knows about Long QT Syndrome ~ if possible, consult with an electrophysiologist (I think that is how it is spelled) ~ basically a pacemaker/ICD doctor (for consultation about your situation right now).

Good luck and you are such a good mom!
~ Wendy

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