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Child has congenital junctional ectopic tachycardia. Is arm numbness related to increased heart rate and chest pain?

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Internal Medicine Specialist
Practicing since : 1996
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Hi my son has been diagnosed with congenital junctional ectopic tachicardia ... I will first give you a bit of his back ground.. this diagnosis was in 2005 my son is now 13 years old and although he does not have as many episodes as he used to...The episodes he does have are very scary... here are some of the things that have happen with these episodes besides the heart racing at 100 bpm and most times higher..he has passed out.. he has complained of chest pain what he says feels like 1000 needles poking him all at once and his right arm will go numb and is cold to the touch and when u feel the left arm it is normal temp... these episodes have happen with all activities from excursion to eating..even when he's been asleep and woke up from an episode.. my questions to you would be.. 1. I've been told that the right arm numbness is not related to his heart condition..but what I know of this is when his heart is racing the blood is not being pumped properly so why is it so realistic to believe that the episodes are causing the right arm numbness? the blood could be pooling or even at the other end of the spectrum it could be a case of there not being enough blood being pushed to the brain.. #2 I've been told that cryo ambulation could be used to go in there and zap the extra electrical beat that is mixed in with the natural electrical system... but yet when ever I mention that this is a path I would like to try (and yes I have been informed that there is a chance that the condition can re-manifest it self) I am told they do not want to go that route until he reaches the point of critical ..I am very confused and have yet to hear an answer as to why on earth wait until he is critical and damage is done and irreversible? when they could go in there zap it and hopefully never deal with this again
Posted Sun, 16 Sep 2012 in Child Health
Answered by Dr. Prasad Akole 2 hours later
Dear friend,

Thanks for posting your query.

Yes, I agree with you that your child has congenital arrhythmia and is symptomatic for it significantly.
He should be treated with RFA (radiofrequency ablation) or cryo-ablation wherein they reach the cardiac chamber, locate and induce this arrhythmia and ablate it with RF or cryo.

The episodes of arm numbness have to be due to the arrhythmia.

Did he have his cardiac echo and Doppler or any upper extremity Doppler done to look at the affected arm, to look for any supply abnormality there?

Can you please load any older Doppler reports here using the site's uploader? You have a feature to upload the reports / image by yourself at the right side of the query page, please utilize that so that I can answer your queries better.

As an anesthesiologist trainee, we had done many pediatric cases of RFA and I do not think age is any bar to treatment if it is significantly affecting the child.

However, to be 100 % sure about the age issue, if you can post more reports here, I can re confirm with my expert cardiologist colleague here with us who does EP studies and RFA in our hospital.

Do not worry. Things will sort out.

I hope to have answered your query satisfactorily.
Take care and please keep me informed of your progress.
Good Luck!

After your follow-up queries, if any, are answered, may I request you to rate your experience here and have a review before you close the query?

Thank you.
Above answer was peer-reviewed by
Follow-up: Child has congenital junctional ectopic tachycardia. Is arm numbness related to increased heart rate and chest pain? 7 hours later
yes he goes in for follow up on his condition and at each visit they do ekg, echo, and he is sent home with a 24 hour halter monitor... I have never requested his records from the specialist so I do not have these readings at the this time... He has been recieving follow up since 2005 and at each visit they perform the above tests.. He's also worn a 30 day event monitor...when he was first seen by the pediatric cardiologist specialist they did a stress test.. which had obvious no so good result while running the tread mill my son's heart rate had an immediate incline to 160 bpm and the doctor was visibly shaken by this he immediately ask my son to slow down and begun the steps needed to end the test.. When I the Dr. what was wrong he told me that the heart rate had jumped to 160 bpm with no incline and that usually they would see the effects of the excersize when the patient was in the cool down not while the activity was taking place he also informed me that there should never be an immediate jump in the heart rate with no incline..that typically you would see a gradual incline... and yet after all that being said and after this happening in the presents of the Dr. they have never restricted my son from any exertive activities... And recently I've asked if they think we should do another stress test since my son has had many episodes with his heart during physical activity and none of the medical staff that tends to him are willing to run another stress test.... That just amazes me and I don't understand why they say "we do not restrict your son from any physical activities" yes oh no we will not put him through another stress test.. my son plays hard and does more then they could ever put him through on that tread mill.. so who's to say what his heart rate is with activities out side the hospital setting...
Answered by Dr. Prasad Akole 1 hour later
Thanks for reverting with these details.
Sadly no records / printouts!

I do not feel a stress test is mandatory, as it is usually done for a cardiac ischemia (blood supply problem) and not for an arrhythmia which is occurring with daily activity.
A holter is good enough!
So do not worry much on that part.

I asked about any evaluation/ angiography/ doppler of the affected arm which goes numb?
Any mention by doc of any stenosis/ developmental abnormality of the supplying blood vessels to the arm, which may be insufficient at low cardiac outputs during the arrhythmia (very high heart rates).
Has it always been junctional tachycardia or is a variable rhythm?

Of late, does he faint/ passes off on usual activities or only on strenuous activity?
How fast he reverts?
Does the affected arm go bluish / discoloured as well as cold?
Is his growth looking normal over years?

I would be glad to answer you with better accuracy when you can provide me more info.

And would surely revert once I have a better solution to offer.

I think he should undergo EPS (electro-physiologic mapping studies) of the heart and a possible curative ablation.

If ablatable they get remarkable freedom from attacks and many times a permanent cure.
So let's see what best can be done.
You can find out on Google etc. about your nearest cardiology centre (a big renowned or university hospital) doing the paediatric EPS and ablations.

Take care and keep informing me. If at all he faints, he should be made flat on a hard surface and his legs elevated to improve blood return to the heart.
I hope you keep the friends and the school informed on these issues. He should also wear a warning batch/ chain about this occurrence, just in case!...

Thank you.

My friend cardiologist just told me that EPS can be done at this age of 13 or even earlier. They wait in very small children if it is not a very bad arrhythmia.

so you should look for a paediatric EPS specialist at a good cardiac centre there and go in for the test. Smaller centres may not know/ have the expertise needed.

The arm pain is not very well explained though, even he said.

So nothing better than early evaluation.Good luck !!

I hope I was quick!! :)

Above answer was peer-reviewed by
Follow-up: Child has congenital junctional ectopic tachycardia. Is arm numbness related to increased heart rate and chest pain? 10 hours later
No they have done no doppler or any kind of evaluation on the arm as they have told me they don't feel it's cardiac related... And I have become very frustrated with the medical field for only concentrating on what they think is heart related symptoms and not treating him for all symptoms presented at the time of each episode... I know I can not give up on them totally and do still run him to the ER or closest facility when a episode occurs... your next question is hard for a non professional to answer..about what they are calling these episodes ...but once the test are run some of the wording the Pediatric Cardiac Specialist uses is Ectopic beats, P waves ( I believe ) they are always checking the injection fraction on echo and when my son was younger around 2007 there was something related to the left ventricular where I was told we were .05 mm (I believe is the measurement) away from critical..but thankfully just shortly after my son hit his growing spurt and on the follow up visits his chest wall had grown enough that we were no longer at the critical point... and no one has done the electro physiologist study again when I ask about this I am told he is to young and they want to wait and if it comes to the point of critical then they will and that reasoning I was told was normally they do those studies hand in hand with the ablations... He has been seen by a electro physiologist specialist when first being diagnostics with Congenital J.E.T. and she did explain to me what was going on with my son and told me of the treatment options which after the cardiologist specialist tried him on Atenonol (? spelling) and my son's condition did not respond... she told me of the cryo ablation which at the time there hospital was just getting this equipment and she had never used so at that time she wanted to wait on that option because she said I would like to be able to treat older patients until I know exactly how to use the equiptment.. but she did tell me that the ablation that is the burning method can not be uese on my son because of where the extra electrical beat is..she said it was mixed in the middle of his natural electrical system and it was to risky that they would hit the natural electrical system and then they would have to scramble to save his life with a pace maker..So that my choice would be to either try more heart meds (which I have learned only a small percentage of patients with this condition respond to and I don't care for the side effect) or the cryo ablation would be my choices of treatment for him and she said in the end the avenue of treatment would be.. so unfair as i'm NOT the one with the medical degree ..and if I were I would be choosing not to wait until the point of critical to take action.. just so frustrating .... but thank you for your time and I hope I have answered the questions you had.... and also thank you the advice on the medical alert bracelet or necklace is a very good idea... As I always inform the school he attends and the friends he hangs around with of his condition and they know to call 911 if the heart is racing and will not correct it's self or in the episodes he passes out but I guess I always thought of the medical alert bracelets for the use of patients with diabetes or epilepsy very good idea thank you!

sorry part of my sentence was not there completely ... what I ment to say was she told me that the avenue of treatment when we were at the point of critical would be for me to decide... and to which I think is so unfair as I'm not the one with a medical degree..

wow i'm not doing so good today ...when rereading your reply I see I have failed to answer a few of the questions you had for me... The Dr. have referred to this as Congenital J.E.T... SVT ... He has many episodes a day with the heart racing but he does not always pass out and he does not always have the numb arm and coldness... we have been blessed that the condition does correct it self alot of the times ... But in the more sever episodes where he has passed out have been at times like ...examples... trying to join a basket ball game where he was running after the child with the ball and he fell straight to the ground unconscious and the arm was cold and numb and the school called 911... one time when he was in an argument with two students that were bulling him where he fell to the ground unconscious and the two students ran for time on a marry-go-round where he passed out... another time when he had been asleep for hours and he woke up crying of chest pains and the numb arm and cold to the touch... and no it is not blue but he has no feeling and it is cold to the touch while at the same time the left arm is warm.. and the most recent episode was last night after he showered he yelled for me that he was feeling like he was going to pass out.. I took his pulse and he was at around 120 bpm and recently I have noticed a new symptom after the racing heart beats and the condition seems to have corrected it's self and the pulse has gone back to normal...he is missing beats the pulse almost feels like it skips for 2 or 3 beats... this is a new development .. and as to the question on how fast does he revert which I believe your asking me how long does it take for the symptoms to correct them self some episodes only last for 5 or so minutes other episodes where we see him passing out and the what I see as more serious effects last 10 to 15 minutes but I've never personally timed these episodes so these are estimated times... now I hope I've been able to provide more detailed explanation ..I do wish I had thought to be requesting test results through the years.. I guess I never seen the use of me having them but would now love to have them to provide them to you
Answered by Dr. Prasad Akole 3 hours later
Hi there!
Thanks for the elaborate description.

Now I am very sure that it is indeed a serious and life threatening arrhythmia (a CJET/ paroxysmal SVT) with accompanying syncope (unconsciousness).
He is 13 years and absolutely there is no reason to withhold invasive evaluation and treatment.

I am extremely concerned and agree with you that doctors and not 'you' have to take a decision. It happens every day in ICU that I have to decide on life and death, and I do, if the risk -benefit ratio favors risky procedures.

As I told you and my cardio colleague echoed that ages older than 8 years or so are Ok to do the procedure. I had given anesthesia/ sedation for kids much younger for EPS/ RFA in Mumbai ~ 12 years ago.
I am into critical care for past many years and see it as a life threatening condition.
I see that there was no facility or expertise there, so it was not done.
Dear, there are always centers with facility and expertise. just "google" ' pediatric complex arrhythmias/EPS/ RFA/centers USA' and find out a renowned one, get all your past records from the hospital, and take 2-3 more expert opinions fast, before it is too late.

A person of my sort would take a decision for you, if it would respond to any medicines, if an EPS/ RFA or Cryo were necessary and do it with whatever risk.
I agree that some are very risky/ challenging arrhythmias to treat with the same good efficacy.

However, look at it this way.
Untreated, there is always a risk to life.
With attempted intervention, there is at least some chance of permanent cure. Many a times the cure is unimaginable. If at all, may need a pacemaker/ICD, which nullifies the risk again. The kid has life to live.

I think this treatment option should be explored, whatever the risk.
Risk of not treating definitively is much greater.
Try finding an expert pediatric EPS specialist. His age is no bar for such serious rhythms. Of course, the expert electrophysicist will be the final authority to decide. If you are asked, and family is ready, you should take the risk and go ahead.

I would be happy to look at any reports if you (you should) gather and guide accordingly.

Take care and please keep me informed of your progress.
Good Luck!
I hope to have answered your query satisfactorily.
May I request for your rating and review of this answer before you accept the answer and close the query (if there are no more follow up questions)?
Thank you!
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