heart rhythm

[nettynoo]

HI,
i'm new to this but wonder if anyone can answer some questions for me ,my son is 16 years old and has a resting heart rate of 37 bpm and has had a reveal monitor fitted after having an adrenaline provaction test which showed he had >500mms on his qt he then had an exercise test done and collapsed after his heart rate went upt o 200 bpm ,but when he was slowing down he went asystole for 15seconds then seemed ok but needed to have the reveal fitted so they could await genetic blood results he has now set this of on 3 occasions, on one occasion he had 1 asystole over night whilst asleep for 10secs, had a heart rate of 228bpm on another and has been up around the 200 bpm on 2 occasions whilst walking up stairs we are getting very frustrated with having to wait for the bloods and do u think it is safe to!!!!!!!!
thanks
p.s my son has also collapsed 13 times over the last 16 years and they put it down to balance problems which have now been riled out

[SillyHeart]

What do they think the diagnosis is?  Long QT?  If so, they'll hopefully fit him with an ICD as soon as possible since he is symptomatic.

[Artaud]

Hi,

Despite the long period of seemingly improper diagnoses, at last you have some understanding of what is going on. Sometimes, from my understanding of it, Long Q-T Syndrom (syndrome) runs in families, so I the genetic testing seems proper.

Please understand that this forum is comprised of people with similar problems, and some members work in Health Care, but no one here is likely to be an authority on the issues, save for their own experiences. What your son has is potentially serious, and I hope you are closely in touch with his Doctors. As SillyHeart said, ICDs (implantable cardioverter-defibrillators) are often used with people with Long Q-T Syndrome.

What do you mean by "but needed to have the reveal fitted"?

Also, it's probably a stupid question, but your son is being seen by a Cardiologist (or better), isn't he?

Are you really asking for any information, or are you just getting the whole mess off of your chest? I can imagine the frustration your family has been through. I had seizures for 19 years before they discovered them, always putting the symptoms down to this or that, as I never had Grand Mal Seizures, just some weird feelings and temporary memory disturbances.

Be well, keep us updated on the issue.

[nettynoo]

hi,
yes they fitted a reveal heart monitor after the exercise test, they was looking to see if he had lqt and was all set to fit icd until he had  the exercise test and they said his heart had gone the other way ????? on the tuesday he had ventricula tachcardia after having the provacation study and qt interval above 500 but during exercise test on the friday no lqt and he got up to 200 bpm whilst exercising and whilst slowing down he had 15 secs asystole so that is why they fitted the reveal.and have decided to fit it until bloods come back we are not happy and are very worried  i havent come on here just to get it of my chest ive come on for advice as we are very confused and worried and i maybe doing the wrong thing but im trying to ask others so i can try to understand what we maybe dealing with and help my son so as not to put him through anything else  

[nettynoo]

we are under a cardiologist but cant seem to get to talk to him properly with our concerns

[Staplator]

I'm just wondering for my own knowledge, what happens to your son when he goes asystole?  What signs and symptoms does he experience?

[Artaud]

Hi,

I meant not offense. What I was trying to say is that your initial post did not contain any specific questions, just information about your son's condition.

You are most welcome to this forum, if I can speak for the others as well, as many, if not all of us, have been through some very frustrating times.

I am concerned about your son, and would like to see you get the answers you are looking for. But to have answers, there needs to be questions. Pertaining to questions, perhaps you can post, and others can add to it, questions that you feel need to be answered by the Cardiologist. Then, write down the questions, and take them with you to the Doctor's Office, and respectfully, go through the list. If the Doctor is less than open to the questions, and believe me some Doctors can be real jerks, try asking the questions to someone else in the office. For example, my Cardiologist has an Office Manager that is also responsible for doing the Echo Cardiograms and initially reading the results from the Holter Monitors that their office uses. Anytime I call with problems, I always speak with her first, not because I want to, but because this is how the office is structured, she shields the Doctor from routine calls. But if I have a question that may involve my immediate health, she phones the Doctor. My point is that the office where your son is seen may have someone equally responsible, and may be able to answer the questions, or may be able to intermediate between you and the Doctor to get the answers.

If not, seek a second opinion from another Cardiologist or better.

I hope this helps.

[nettynoo]

when my son goes asystole he falls  to the floor always banging his head and has now had concussion 13 times ,he has a blue ting around his lips and has a  white apperance and is clamy to touch.


also thank you   artaud, we have trried to speak to him but he wont commit himself at present other than to say that our son will definatley need to have a pacemaker and maybe an icd dependent on blood results . we have also looked at getting a second opinion but our local gp wont reffer us until the bloods have come back either so at present we r in limbo!!!!! with our son  it is so frustrating
I have also tried ringing his secretary and she said she would pass our comments on but we never hear back .
Does anyone know how long it takes for genetic bloods to come back ?

[Staplator]

Sorry for asking these questions, but one last thing I'm wondering is how long it takes him to collapse after going into asystole.  I'm trying to figure out a strange problem I've been having, with no one being able to tell me what it is so far.

[nettynoo]

he collapses immediatley on asysole well thats what we have seen him do last week after treadmill test as for the rest i can only report what we saw on finding him but it seems that he passes out straight away or he would be able to put his hands out to save himself and wouldnt have banged his head so many times . what is your problem then if you dont mind me asking?????

[Momto3]

Hi nettynoo,

I'm so sorry you are so frustrated.  I can remember when my son was very young and I KNEW something was not right....30 visits and several doctors later we had a diagnosis.  More importantly, we worked with a very kind and supportive physician.  If you are not able to speak with the doctor, you may want to consider a second opinion.  

I have an EP in Cleveland who specialized in LQTS and she is passionate about identifying the condition and working closely with patients and their families.  There are never too many questions to ask her.  I'm just so disappointed that you're having so much trouble talking with your son'd doctor.  Sometimes, I think they forget what it's like on our side of the phone conversation : (

When do you expect to hear back on the blood and other test results?  Hope today is a better day : )

Connie

[nettynoo]

we have been told the bloods could be another 4 weeks but not sure if that is right ???do you know how long bloods take to come back for lqts???

[Momto3]

WOW....I'm not sure.  Do you know what type of testing they are doing?  If it is genetic testing, I do think it can take awhile.  

It might help you if you call your son's doctor's office and ask for a copy of all of his test results.  Sometimes, they will charge a fee.  But, it could be worth the money.  That way, if you even need to refer to the results, or if you decide on a 2nd opinion, you'd have a good starting point.

Is your son on medication?  I got the impression that he does not yet have an ICD, is that right?  If I understand correctly, the doctor thought your son might have LQT, but now because of some testing, they are not sure so they are waiting on the Reveal monitor results.  Is that right?  

Connie

[nettynoo]

yep thats right and hes not on any medication, we have been told that he does need to have a pacemaker but they a reluctant to do this until genetic results have come back incase he does have lqts  and then they will put in an icd with pacing instead .
i have today rang to ask how much longer bloods are going to take and havent heard back yet

[Staplator]

The problem I've had is that suddenly I lose a palpable pulse (I can't feel it in my hands/wrists or in my carotid arteries in my neck), my vision gets darker, and I get dizzy.  It lasts 4-9 seconds, though I can still stand up and walk around.  When it happens my body feels completely still, then suddenly everything returns to normal.

The only time it didn't immediately go back to normal was the first time it happened; it scared me when it first happened, but it felt very strange since although I was extremely startled I didn't get a jolt of adrenaline, then the very second it ceased my heart rate was immediately 170 BPM.  I've asked doctors, but no one has an answer for me.  One other person here said they've had it happen too, but their doctor could only make speculation.

I've been told that from asystole you'll pass out within 3 seconds, which seems to coincide with what you see in your son.  Although my vision darkens and I become dizzy, if I'm still able to stand up and walk around for at least 8 seconds, I would assume that rules out me having any sort of problem like your son; either that or I somehow defy common medical knowledge.

If something like what I have scares the hell out of me, I can't imagine what you and your son are going through.  A friend of mine told me about his cousin who has some sort of heart condition where his heart will "reset itself" for 15 seconds (as I'm told).  It could be something completely different, or maybe it's related.  If I find out anything else about this cousin, I'll post it here.  Good luck with things.

[Artaud]

HI,

Are you in the United States, and if so, what Insurance do you have?

Most HMOs, at least in the Western Pennsylvania area, no longer require referrals to seek a specialist. For instance, I have Health America, I do not need a referral anymore, but visits to Specialists require a $25 Co-Pay.

Best wishes.

[jkfrench]

Hi~
I'm not sure if I was the one that told you I have that same thing happen so sorry if I'm repeating myself.
I loose my pulse for about 3 or 4 seconds but it is always followed by that rapid PAT. (around 220).  When I can't feel my pulse, I feel like I'm fading out but as you, I can get up and walk around as I am feeling that.
What is asystole?  This event happens about 2 or 3 times a year so it would be very hard to catch.  I hate it!  Seriously out of all the skips, flutters and racing, this is the one I hate the most.  I really feel like my body is still.  It is so hard to explain.  I never actually counted how many seconds I loose my pulse but I'm guessing 4 seconds or so.
Frenchie

[nettynoo]

Hi artaud,
we are not in usa but in the uk so we have to go through our local gp and get refered for a second opinion but he cant see any point in this until the genetic blood test have come back .so frustrating having to wait wish we could have your system at times

[nettynoo]

Hi staplator,
sorry to hear what u are going through, my son always falls when his heart goes in to asystole that is why he has hit his head 13times as he is unable to put his hands out .he has had a blood clot through falling so heavy and as had stitches on numerous occasions. we are just thankfull that he has come through every event and his heart has restarted on its own.
have they not asked you to have a heart monitor fitted????
my son has 1 and he activates it if he feels strange or somone else will activate it if he unconsious    maybe you could ask !!!!

[Staplator]

I've had one before, but since this happens so infrequently it wouldn't be practical to try to capture the event for me.

And jkfrench, it was someone else who told me they have this happen, so you're the second person I've seen who has this.