15 Year Old - Sudden Cardiac Arrest

[orian9200]

I am the mother of a 15 year-old daughter that suffered cardiac arrest in October 2006 while playing volleyball.  A defibrillator was used and she was brought back.  Here is the history:

* Surgery in November 2005 to correct a pectus excavatum.  While in recovery she started throwing arrythmia's, lots of pvc, couplets etc.  She had several EKGs and Echo's and there was no damage to the heart from the surgery.  She had a metal bar implanted under her sternum known as the Nuss procedure.  No incidence of PVCs before sugery, pre surg testing or any mention of of pvcs during her yearly physicals etc before her 2005 surgery.
* Sudden cardiac arrest in October 2006 playing volleyball.  She was cleared by her cardio to play sports upon entrance to high school.
* The defib strip showed ventricular fibrillation.
* Tox came back neg for any drugs etc.  Potassium was a little low.
* A week after her arrest she had a defib implanted.
* She underwent genetic testing which came back negative for catecholamenergic ventricular tachy.
* Family history of PVCs, mother (myself), nephew, brother and half sister.  No incidence of any sudden cardiac death for any immediate or removed family member.
* Newest holter reading shows an increase of over 30% of all heartbeats are pvc's.  EP said a year ago she was 15%.  
* She takes 40 mg of Nadolol 2x day and 150 mg 2x a day of Mexiletine.
* She has suffered from depression and eating disorder but no pvc diagnosis during either evaluations (before 2005 surgery).

Her EP wants to do another echo to look at possible ARVD.  She can no longer play sports and her quality of life is for the most part is not okay.  She's always tired and can't do things that her friends can etc. etc.  This in turn aggravates my PVCs and the vicious cycle begins.

I guess my questions are:

1.  Does this sound like it's getting worse.  I really need honest answers.  I need to know what I am dealing with.  I have the utmost faith her doctor's, but we don't have a true diagnosis.  
2.  Should I be looking at Mayo or Cleveland Clinic for a second opinion?
3.  Could the pectus surgery somehow triggered something?

Thanks.

[Pamz]

As the mother of a 25 year old son that suffered cardiac sudden death 2 years ago and was cardioverted and now has an icd, I really sympathize with you.  I would suggest that you ask your cardiologist to refer you to the Mayo Clinic, Cleveland Heart or John Hopkins.  They have cardiologist there that cover most of the different known heart syndromes.  They will look at the entire family, even if there isn't any history.  My son showed no reason for his situation.  The mutation may be there, just hidden.  Mayo noticed that my EKG showed a bit of a shorter than normal qt interval but not short enough by itself to be considered a problem and I was considered symptom free.  My son's qt interval looked fine but, when they did the genetic test based upon my ekg, they did find a mutation on the sc5na gene, which they are still studying to fully know what this is causing.  It appears that when he was out runninng as hard as he could, like he did the day he suffered scd, his heart rate doesn't go up enough to cover the body's need and the qt interval shortens.  When I say I was symptom free, I mean that I didn't think I was experiencing any heart issues but, as it turned out, I really did.  My heart rate is extremely slow thoughout the day and down to stroke levels while sleeping,  I'd had episodes of not being able to catch my breath and go to the hospital but I and they always associated it with allerges and specifically allergies to things like antihistimines, which I now know can cause bad rythms with people that have heart issues (and so can diet pills - does your daughter take any?).  I never knew I was at risk.  My brother died at 22 and they did put on his death cert that he died from an unknown arrythmia but, we all thought he'd been jolted by electricity, so, until my son's issue came up, we never thought any thing else and even then, his cardio thought that may have been a separate issues.  Mayo clinic did not.  If your daughter has a genetic test done for ARVD, that will also check for Brugada, long qt and short qt all with the same genetic test.  Your daughter could be the first in line with a gene mutation but her siblings also have a 50% chance of having the same mutation.  I think you could find out these answers at Mayo, Hopkins or Cleveland.  Based on Mayo's findings, my doctor put me on another 30 day online all the time monitor and did an exercise test, Because of the severe braycardia, I just recieved an ICD last week.  Working on getting my daughter tested now.

My prayers are with you as you search for answers.

[bnbsfsd]

I've just came across this post, its a bit old, but I'm having some issues with the same thing, how ever the only thing different is that I've alot of dizzy spells, I've a indentation in my chest, and a surgery done to bring the sternum out, I did well for about six month, and I started to get dizzy again, but they did not insert a metal rod in the center of my sternum to keep it from caving in, again, I'm having a hard time breathing and the dizzy spells are coming on more and more, and along with that I'm extremely Tired. every day.

How long after the surgery did she start experincing issues again..

just curious.. I heard the cartoid artery can be depressed a slight to cause dizzy spells and possible cardia arrest. that is one I'm dealing with now. just curious.

be nice to find out.. after the surgery, like I said no problem with any cardio issues, my pectum is now again depressed and i'm having the same issues, doc thinks it PFT I'm frustrated I explain the before surgery dizzy and had stroke, after surgery did well for six to eight month and now I'm back to the same ole same ole.. anybody have an input on this one.?

[CollegeGirl143]

Thank you very much for keeping us updated on your daughter, she is many of our prayers.. Im glad you are on your way to a diagnosis, please continue to post on your progress, god bless.

[orian9200]

Well we went for another echo and her doctor said she has an abnormal wall motion.  They are leaning heavily on diagnosing her with ARVD.  Her PVCs are at 35%-40% over a period of 24 hours (based on a holtor and an average of 100K heartbeats a day) so that means like 35K - 40K??.  Due to the fact she was 15% last year and now this wall motion thing...who knows.  We are going for a second opinion the first week of January and from there, we'll be going to to one of the major research hospitals I'm sure!   Since she has an inplanted defib, she can't have the imaging studies to really look at her heart.  Since most of this stuff is genetic, I can't believe that no one in our family has died suddenly or from heart disease.  My parents are in their 70s and are still active and their parents died later in life etc., so if this is genetic, especially as an autosomal dominant, why is it just her?  I reread my holor to her doctor and except for benign PVCs and one atrial couplet, there is nothing significant.  My echo came back normal except for some trivial mitral regurg that they said was more like a normal variant and some minor mitral valve bowing, which again didn't stand out as anything to worry about.  Thanks to everyone for listening and posting!

[416340]

I am sorry to hear what you and your daughter are going through.  I am currently suspected of having ARVD and have found the ARVD program through the John Hopkins Hospital to be very helpful.  You can find their contact information through the ARVD.com website which is also very informative.  Also, you may want to ask your daughter's EP about getting a CT scan of the heart (since she cannot have a Cardiac MRI because of her Defibrillator), and/or an RV angiogram.  My echo's have come back completely normal, but my MRI has not.  The MRI and RV angiogram are able to get more detailed images of the heart than an echo.  The ARVD diagnosis is a tough one to make and usually takes a fair bit of time, but it seems that they have already taken the right steps by placing an ICD.  Take care!

[betauser]

I was very interested in what you are going through....I am on nadolol myself and am trying to make it on 40mg once a day.  I don't even like that much medicine so I can only imagine how your daughter feels.  I am also a mother ......well.....I can't imagine how brave you are trying to be for her!!

Anyway I am probably way behind but I typed in "heart problems after nuss procedure" on google and about half way down the page there was an web sight that looked like it had an article talking about it. It would not let me go further to read because you had to sign up???  You may or may not want to investigate but the title was "Orthopedic nursing".  I also ran into another sight written 1yr ago with someone asking about the procedure and the person answering said that one of the complications with the procedure was the heart.  I thought that was very interesting considering your problem.  Anyway I am probably way behind but if you have any interest I can work a little harder to get you to where I was......I wish you all the best.

[mommyto4]

hi, i just wanted to say  i hope you get some answers! thank god your daughter is ok, and thank god for the defibrillater and the person that used it!!!!
i can't imagine what you are going through, i just wanted to wish you and daughter well!!

maria

[orian9200]

Thanks for the replies!  My daughter's weight is up almost 14 pounds from when she was first diagnosed with her eating disorder and we continually monitor her.  It's probably a combination of things leading up to the event.  Last week she had a holtor to see how her heart was reacting to a new medication.  Her PVCs have doubled since last year.  Her EP said that over 30% of her total heart beats are PVCs.  Not very encouraging, so we are set for an echo this Thursday.  I hope everyone else is doing okay!  Thanks!

[maggiemag]

Boy, this is a difficult question.  My younger son has a pectus, and I was concerned through the pubertal years that it would worsen and require surgery, but it didn't.  Although it sounds too coincidental, I personally doubt that the arrest was related to the surgery.  I would seriously consider going to the CC or the Mayo if I were the parent.  I would also continue to investigate the eating disorder.  I don't want to upset you, and it is true that I have no experience with eating disorders, but I wonder if she could be downplaying it and maybe hiding.  In other words, maybe her eating disorder is more active than she wants you to think.  Please don't take this the wrong way.  Oh, and the usual Marfan's heart characteristics, I think, would show up on echo.  Let us know what happens, please.

[tickertock]

I should have/meant to write If she didn't have arrhythmias before the surgery and now has them since i would defintely consider a possible link.

[tickertock]

I'm sorry to hear about your daughter and hope you get some definitive answers , the great news here is that she was able to be revived and now hopefully she will a diagnosis and this never happens again. Both my sons and I have pectus excavatum, plus the stretch mark lines on our backs but there is no history of marfans in our family, age has seems mine  much better it was moderate to severe, now its hardly noticable, my sons one 18 and the other 21 have moderately to slightly severe, I'm hoping theirs improve with age. An EP back in 87 mentioned to me that my heartawareness  was probably due to my pectus excavatum, yet my sons are not heart aware or ever complained of palpitations or PVC like I have. i think the Nuss procedure though less invasive have shown some negative affects from what I've read. Did her pectus excavatum cause her symptoms or was it done for cosmetic reasons.Most people that have pectus excavatum do well and is not disabled in anyway, though it can impact the heart & lungs if very severe. I'm not a doctor but if she had arrhythmias before the surgery and now has gone through all of this I would think it is possible that the surgery could have possibly caused a shift in the way her heart had adapted in her chest to accomodate the pectus excavatum, this might sound farfetched and I could be completely wrong but its worth talking over with a good cardiothorasic surgeon and electrophysiologist and see what they might come up with. Good luck and best wishes to you and your daughter, may she continue to do well and you find the correct answers and diagnosis.

[anacyde]

As a mother, I can imagine how worry must be forefront in your mind.  I am so thankful for you and your daughter that the defibrillator was available.  I'm actually tying to make sure these are available in our community for this very reason.  While my children do not have known heart problems, there are children who do and we need this lifesaving equipment available.

1.  Does this sound like it's getting worse.  I really need honest answers.  I need to know what I am dealing with.  I have the utmost faith her doctor's, but we don't have a true diagnosis.  

Her ectopy has increased to 30% from 15%.  That is significant and warrants investigation.  Thankfully, she has the defibrillator.  Hopefully, the VF won't return and she'll never need it.  Now, there are some cases where ICD leads can make the ventricle irritable.  As for a diagnosis, I think she needs one.  Have the ARVD investigated, as it is treated a bit differently than other forms of ventricular arrythmia.

2.  Should I be looking at Mayo or Cleveland Clinic for a second opinion?

If this were my child, you bet.

3.  Could the pectus surgery somehow triggered something?

I would seriously doubt that.  I would be concerned with the eating disorder.  Having recovered from a very long battle with it myself, I know it can take quite a toll on the body.  Do all you can to ensure there are no relapses, and if any do occur that she is promptly treated.  I'm sure I'm probably preaching to the chior here, but eating disorders can trigger arrhythmias - especially in those prone to them.  Sudden cardiac death is what killed Karen Carpenter.  She suffered from anorexia and bulimia.

Again, I'm so glad she's here after her experience with SCD.  I hope you find out soon what her diagnosis is and that things calm down with the ectopic beats.  I trust Cleveland Clinic more than any other center, though I hear wonderful things about Mayo and also Brigham and Womens in Boston.  Best wishes to you and your family.

[orian9200]

I will definitely be asking for a recheck of Long QT.  Thanks!

[KLeonard]

You mentioned your daughter was already tested for Long QT, But what tests were done to actually test for it? You mentioned she had a genetic test done for something else, what test was it, Familion? There are several tests you can undergo to be diagnosed with Long QT and it sounds very possible this is what your daughter could ultimately have. As stevie_wonder mentioned you do need to follow up on the Long QT ordeal, as she said, many drs do not know enough about it and it gets thrown out the window. However, an ICD is like 99% effective for this anyways, but it would still be reassuring to know to be sure it's not that. Also, www.qtdrugs.org is a list of the drugs she should stay away from until a specialist clears your daughter of Long QT.

[stevie_wonder]

I can relate to on rough years! I have not had many relaxing moments since my son's cardiac arrest. It has almost consumed my life. It does sound like you have a good doctor who is willing to get to the bottom of this. The thing with Long QT syndrome is that it can sometimes hide and then show its ugly face when certain conditions apply, for instance, low potassium or certain drugs, even drugs used during anesthetic for surgery. With our family some members have almost normal resting ECGs, my son included, but when electrolyte imbalances, dehydration or certain medications are used, all hell breaks loose. There are certain doctors who specialize in Long QT Syndrome who are willing to read ECGs at no cost. Mention Dr. SG Priori to your EP as someone maybe she could consult with your daughter's ECG. She is a brilliant doctor who dedicates her life to Sudden Death prevention. She is working in Italy and accepts ECGs by mail or email. Her info is easily found on google. It is worth a shot.
Good Luck and remember your daughter is protected!

[orian9200]

Thanks for the post!  I think that is the intent of her EP is to start ruling things out now.  We're going to look at ARVD and then go from there.  I know she wasn't hit in the chest because at the time they were doing light endurance training.  One of the doctors on her treatment team did want to check for Marfan's.  My daughter is tall, almost 5'9", thin, long fingers and arms, pectus excavatum, but she doesn't have any of the other Marfan characteristics, but it is definitely something that we'll keep on the list.  I just have a hard time with the fact that she had this surgery and then in recovery, she develops all these arrythmia's which never went away...Thanks for listening everyone!  It's been a rough year!

[Celeste77]

I'm so sorry to hear about your daughters illness. As a mother, I can only imagine the anxiety you are feeling and it's no suprise that your PVC's are acting up.

The only thing that came to mind as far as the pectus excavatum surgery contributing to the VF would be something like underlying Marfan syndrome, though that's probably a long shot.
Commotio Cordis would be much more likely, especially if she was hit in the chest by the volleyball (or fellow player) shortly before the arrest occurred.

You mentioned genetic testing for Catecholaminergic VT, but did they test for Bragada syndrome, or Wolff-Parkinson-White syndrome?
Has the doctor used an event monitor, 64 slice CT, or done an extensive cardiac catheterization to look for arrhythmia's or other possible problems other then the time he implanted the defib?

Although it could have been a one time event like Commotio cordis or an idiopathic event, I feel that after a year of no diagnosis I would go for the second opinion at one of the two places you listed if for anything, peace of mind and a fresh look at everything.

Although some of these things have been ruled out, here is a pretty extensive list of conditions etc. that can cause VFib.

The most common cause of ventricular fibrillation is inadequate blood flow to the heart muscle due to coronary artery disease, as occurs during a heart attack.
Other common causes include shock, Long QT Syndrome, Brugada Syndrome (rare genetic cause of sudden unexplained ventricular fibrillation), Myocarditis, Valve dysfunction, very low blood pressure, Congenital heart disease, Cardiomyopathy, Aortic stenosis, Aortic dissection, Pericardial tamponade, and drugs that affect electrical currents in the heart such as sodium or potassium channel blockers.

In hearts with no structural heart disease the most common causes include;
Catecholaminergic polymorphic ventricular tachycardia and right ventricular outflow tract tachycardia.
Commotio cordis, Preexcitation (including Wolff-Parkinson-White syndrome)
Heart block, Drug-induced QT prolongation with torsades de pointes, Channelopathies, Long QT syndrome, Short QT syndrome, and Brugada syndrome. Overuse of caffeine or decongestants, illegal drugs and very low levels of potassium (hypokalemia) or magnesium in the blood.
Although rare, it may also develop during periods of hypoxia, and atrial fibrillation.

Noncardiac respiratory causes;
Bronchospasm, Aspiration, Sleep apnea, Primary pulmonary hypertension, Pulmonary embolism
Tension pneumothorax, Metabolic or toxic causes, Electrolyte disturbances and Acidosis,
Medications or drug ingestion, Environmental poisoning, Sepsis, Shunts in the pulmonary circulation or a right-to-left Shunt in the heart.

Neurologic;
Seizure, Cerebrovascular accident - Intracranial hemorrhage or ischemic stroke

I know the list has many things that won't apply to your daughter, but it might help to start crossing out things as they are definetly ruled out or not possible and go from there.

Best of fortune. I'll keep you and yours in my thoughts.

[orian9200]

Hi,
My daughter was tested for Long QT and there was nothing evident.  She has had many echo's and EKGs and this hasn't ever been detected.  My daughter also hasn't been an active anorexic/bulimec during the time that this occured although she was still underweight.  As you can imagine it's frustrating because we don't know what we are dealing with and why this happened in the first place.  Thanks for the responses and support.

[stevie_wonder]

Hi,
I am the mother of a 20 year old who suffered a sudden cardiac arrest when he was 18 years and jogging. He too was revived and is now on beta blockers and doing well.  Has your daughter been tested for Long QT Syndrome? Sometimes it can hide on the ECG and show up as normal as was the case in our family. We were only diagnosed about a year later after my 10 year old son had a routine ECG done at the age of 9 because he was having dizzy spells. It was here that a borderline Prolonged QT was shown. Further testing revealed that myself and all 3 of my children were diagnosed as having congenital Long QT Syndrome. Many doctors don't know enough about this disorder to diagnose it. If you check with the website group at www.sads.org they could help you locate an Electrophysiologist in your area that specializes in heart rhythm disorders such as Long QT Syndrome. The good thing is that your daughter is being treated with an ICD and betablockers. She should be protected, but it is still worth getting to the bottom of in case it is a hereditary problem.
Good Luck.

[orian9200]

I  meant to say in my post above that her eating disorder "could" have been related...not directly related.  Thanks!

[orian9200]

Her eating disorder was directly related, but could it have contributed, possibly.  The fact that her blood work came back fine after her arrest is what is puzzling.  Her potassium was a little low, but not dangerous enough to warrant the arrest from what I understand.  It's the pectus surgery that seemed to trigger it...not sure...

[deedle1976]

I'm sorry to hear about your daughters problems. Thank goodness for the defibrillator.   It can't imagine how worrried you must be.
You mentioned an eating disorder. Is your daughter actively bulimic as this can cause arrhythmias and cardiac arrest due to electrolyte depletion. I see you said her potassium was only a little low but perhaps it was a contributing factor to the arrest in someone who already has an underlying arrhythmia.

[slarew]

I'm going to say right off the bat that I'm no expert at all here, but I'll try to help. I do think you should on the ask a doctor forum and post this on there to see what the cardio says, that would help you a lot I think. And I am so sorry for you two...this sounds absolutely frightening, especially at such a young age.

I do know that pacs and pvcs are usually harmless and happens to everyone, just some people notice them while most don't. They are usually not a sign of any sort of heart disease or damage at all, so that's good news. I have noticed for myself that stress and anxiety tend to bring a lot of them on for me. I have also noticed that when I eat a banana every day (I tend to have low potassium also) I usually don't have any pacs or pvcs that day. But I think she needs to be treated further for an eating disorder because I was told by my doctor that my electrolytes were out of wack and that I needed to be eating a lot more throughout the day, and that was what was causing my pacs and pvcs. It's amazing how not having the right nutrients in your body can throw it out of wack. I have also read many stories about using magnesium supplements to help this. I also heard atenlol is a really good beta blocker for this kind of thing. Maybe she just needs a different med, because it doesn't sound like this one is working well.

Good luck!