My 11-year-old daughter was being worked up for dizzy and lightheaded spells during and after sports, when she got overheated and even sometimes just when out shopping. She had one episode during class at school. She has never fainted just felt dizzy, lightheaded, headache and sometimes nauseous.
Her EKG came back per pediatrician "long Qtc get second opinion". She has an appointment Oct. 27 with Pediatric Cardiology. I got her records and her QTc was 430. Her heart rate was 76.
I researched a lot on line and everything I have read shows that 430 is really only borderline and not actually long QTc.
Any of you out there have opinions? What should we expect at her first cardiology visit. I hope they to a Holter monitor that she can wear during basketball practice and I hope they do some sort of exercise or stress test.
Thanks!
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Long QTc - possible new diagnosis
- By BrookesMom
- Posted October 15, 2009 at 1:09 pm · 9 replies
- In Help desk
- Shared with the public
Explore topics in this discussion:
Anxiety Exercise Dizziness Surgery Pain Depression Seizures Stress
9 replies
- Oldest first
- Newest first
- By CuriousDee
- Posted October 16, 2009 at 12:37 pm
- Report post
I was recently diagnosed with LQT and my children were sent to a cardiologist to be tested. They did an ECG and asked a lot of medical history question about them and our entire family. They did put one of my children on an event monitor. She is still wearing it. One thing I would ask about is if you can get a monitor that can be set to start monitoring without her recognizing symptoms. Fifty percent of the times they have monitored my daughters heart have been when she is sleeping or active and didn't perceive any symptoms at all.
They will be particularly interested in whether you have a family member with LQT.
Good Luck,
Dee
- By BrookesMom
- Posted October 16, 2009 at 2:04 pm
- Report post
Thanks so much for the reply Dee! Did they give you any indication of what a normal QTc would be for your daughter? My daughters was 430 which everything I read so far said that was a normal QTc.
Well, all I know is that the pediatrician must be seeing something there that is concerning or she would be sending us to a Cardiologist!
I don't think we have any LQT in the family, at least not diagnosed. I have no symptoms and my husband has no symptoms. Both of us have had surgery in the past 5 years and have had EKGs as part of preop workup and no abnormalities were noted.
However, I do have two sisters with symptoms similar to Brooke. My 25-year-old sister has issues with dizziness, lightheadedness and fatigue. My 23-year-old sister has problems with dizziness and near passing out spells but she always has attributed these to episodes of anxiety. She also had to quit volleyball in high school because she could not run the laps around the gym required for conditioning. She would get dizzy and have headaches with that kind of activity.
So, I guess I will have to just wait until we see the Cardiologist October 27. I am so anxious over this. I am really worried they are going to make her quit playing basketball. She LOVES basketball and practices 3 times a week and has games every Saturday and Sunday. She would be devastated if she had to give it up!
Lisa
- By meg12col
- Posted October 17, 2009 at 1:12 am
- Report post
I was 14 when diagnosed with long qt 8 yrs ago; 11 when symptoms started, except mine were seizures and unusual chest pain during and after any kind of running, along with dizziness, etc. and I always got/get a headache after everything except with the chest pain. My qtc has always been around 480.
your daughter's doc may seem that the qtc is borderline and just wants to get another opinion to clarify if it would be long qt or not
They'll do an ekg to compare it with the 430 one; and mostly likely a holter or event monitor and a stress test could be likely given her symptoms
- By BrookesMom
- Posted October 17, 2009 at 8:25 am
- Report post
Does you QTc fluctuate? For example, hers was 430 at 9 a.m. laying on an exam table and fasting for her blood work. Could it be higher when she is active with her sports or does QTc just remain steady all the time no matter what activity?
Lisa
- By BrookesMom
- Posted October 17, 2009 at 9:10 am
- Report post
Meg, one more question. When your symptoms first started at 11 did they start mild (i.e. dizziness and chest pain) and then progress to the seizures or was it just like all of sudden with the seizures?
Brooke mostly has the dizziness and headaches with heavy physical activity. However, twice she did have chest pain while sitting in class. I'm not sure what to make of the chest pains as she tells me she cannot really describe it. She took a hard hit in basketball the day before but she said it was not like muscle pain.
I am just so anxious over all of this. I really hope she don't have to give up her basketball and running that she so loves!
Lisa
- By CuriousDee
- Posted October 17, 2009 at 10:16 am
- Report post
Brooks Mom,
They did not give me any indication of what a normal QT interval would be.
We were in a little different situation because I was diagnosed first and they are checking the kids because of the strong genetic factor.
My children's ECG were all normal and showed no LQT at all. The Cardiologist said that it did not matter because they could have a perfect test and have a fatal incident the next day.
One thing they want is for me to have genetic tests to see if they can find the weak gene and then test my kids. That may be something they talk to you about since you have siblings with possible symptoms.
He was very upfront with my kids. He told them that although it was bad to possibly have LQT they are really lucky to be in the system and being checked, monitored and learning the symptoms to watch for and what to be done in case they have a bad episode. He told them most families find out after a fatality. I know your family is worried and you don't feel a bit lucky, it took us a while too, but you may want to look at it that way.
My children are all involved in physical activities, one of them up to thirty hours a week, plus school, volunteer activities,church activities and part time jobs. Their doctor told them they could continue their activities, just to make people aware of symptoms and when to do CPR and call emergency personel and/or contact the doctors.
Also I have one child who had to give up some sports due to another medical condition and it was very difficult. She was about the same age as your daughter is now. If she has to give it up she will adjust, just be prepared for some anger and depression and don't let anyone convince you that there is somethin wrong with her feelings. They are very normal.
Dee
- By meg12col
- Posted October 18, 2009 at 1:50 am
- Report post
Lisa,
My cardiologist has told me that the qtc will never stay the same value; however, my pediatric cardio always said I could "grow out" of long qt - he's the one who diagnosed me with long qt in the first place - his theory was that with the meds, it could eventually go back to normal, but that's just not possible and I dont want to give you false hope
I was never told when the qtc value can fluctuate, but since long qt symptoms strike when the heart is under physical or emotional stress, like with being really active and when someone feels really sad, excited, anxious, etc, so I'm guessing the qtc would be higher at these moments; however, it is not uncommon to feel symptoms when I am doing nothing, I have also gotten dizzy, etc while just sitting; loud noises will also cause the heart rate to rise and therefore striking long qt symptoms
- By meg12col
- Posted October 18, 2009 at 2:07 am
- Report post
When I was 11, symptoms were most definitely mild; I did get chest pain during and after running, but I always stopped myself from running after it started; We had to run the most how we could out of 20 laps in 6th grade and up (11 was in 6th grade), by the time I would run 3 or 4 laps at a steady pace like a jog, the pain would start and I would just walk it the rest of the way, it went on for a couple of months and then I cracked down and told my mom and my gym teacher just restricted me from strenuous running and that's it, I figured I was just over doing it and didn't think it was that serious but then again I was just a normal kid; a week before I turned 12, I had my seizure and that took me, my family, and my school by surprise, I had no prior health issues ever and it happened while in class (with classmates I had known for 7 yrs and teachers who knew me well enough as well); that being said, I had figured that the seizure had been a once in a lifetime thing because I had heard that sometimes a person will have a seizure for no reason at all and never have another one and I don't remember having any symptoms until my second seizure 16 months later when I was 13 about to go into 8th grade and I started to think maybe there really was more to this, but I was getting no answers from my ped doctors at the time; it was another 7 months before I had my last and final seizure (well I hope I did anyway) and I was just so fed up with no answers at that point and no reason, so my pediatrician referred my fam to a bigger and better hosp and sev months later, I was diagnosed with long qt and when we started researching long qt on the internet, everything from the past 2 yrs started making sense and we were able to put everything together
my advice here would be to just stay positive and hope for the best; if she has to give up her sports, it won't be easy, but with time, it will get easier; she can play recreational sports tho and even tho it wouldn't be as strenuous as before, at least she won't have to give them up entirely; best of luck to you and your daughter
- By BrookesMom
- Posted October 18, 2009 at 8:57 am
- Report post
Brooke had a basketball game yesterday and played about 7 minutes of pretty intense ball, lots of running, continuous movement, very fast paced game.
The coach took her out for a break and sent someone else in. I could tell she didn't feel well, her face was really flushed and she was breathing super heavy, I could tell from across the gym.
At half time I pulled her over and asked if she was okay and she said after that 7 minutes, she got a bad headache, felt her heart pounding really hard and it took a bit of time for her to get her breath but that she was okay now and felt she could continue to play.
I watched her on the bench next to the other group of 4 girls that were out there with her the same amount of time, played at the same intensity level and none of them seemed so out of breath or red in the face. Brooke never got like this last year so I just don't understand it.
By the way, she is in excellent physical shape, not at all over or under weight and quite muscular. She has qualified for the Presidential Physical Fitness Award every year for the past 3 years. So, it certainly is not lack of physical fitness!
October 27 cannot come soone enough! I need an MD to put my mind at ease.
Add to the discussion