Atrial fibrillation in children

atrial fibrillation in kids
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electrophysiology test in children - 0.0%
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atrial fibrilation in children - 100.0%

 
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Pilar
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Date Joined Aug 2006
Total Posts : 10
   Posted 8/27/2006 7:12 PM (GMT -7)   
I have a 13 yeard old kid that just had his 2nd atrial fibrillation ,( in 18 monts)
We're looking for someone that may have some experience regarding this , we're beetween doctors opinions, some doctors recomends a electrophysiology test, others no.
Please if anyone has any information regarding Atrial fibrillation in childrens please let us know
we will really appreciate, we're very worry about him
thanks confused
Pilar

heartmom
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Date Joined Aug 2006
Total Posts : 9
   Posted 8/31/2006 7:07 AM (GMT -7)   
I was just sent your post from my aunt.  We have a 6 year old daughter that was diagnosed with Wolff-Parkinson-White Syndrome with SVT (Supraventricular Tachricardia) when she was 8 months old.  This was a rare diagnosis, since most people are diagnosed with this at a much older age or they pass away before there is a diagnosis.  Her cardiologist is in the Atlanta area and is fantastic.  It was an emergency visit to her pediatrician, then rushed to Scottish-Rite Childrens Hospital, where the lead pediatric cardiologist was on-call.  He did an EKG/ECG on her and found a tiny blip on the screen and was immediately diagnosed.  He saved her life.  We had to wait 9 mnths for equipment to be made for such an infant and she was on medication Inderol for those months.  Her body was rejecting medication and was in congestive heart failure at the time of surgery.  He was able to fix her by Radio Frequency Ablation since her defect is an electrical defect.  He may be able to assist you and your child.  I hate that you are going through this. It was the toughest thing and still is at times.  It has been 6 years and she is considered normal, now playing soccer and being a kid.  Let me know if this helps you, and if you need any other information. :-)

heartmom
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Date Joined Aug 2006
Total Posts : 9
   Posted 8/31/2006 7:33 AM (GMT -7)   

check out:

This said something about the Radio Frequency Ablation can help!! tongue

If you need other information, let me know, I am here to help, no one was familiar with this when we were diagnosed and was desperate for support, I know how you feel.


Pilar
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Date Joined Aug 2006
Total Posts : 10
   Posted 8/31/2006 9:59 AM (GMT -7)   

Thanks hearthmom  for your answer to my post....we really appreciate.You had been the only response we had so far...is very important to share experiences with someone that bee through this

We don’t know what his problem is, , we’re recommended to contact doctors in electrophysiology, we had send his records and waiting for answers....we do not know what is his problem, that the problem...were looking for answers and to find a specialist who can help us in that, he is 13 years old now, the doctors said that is extremely rare that a kid fibrillate. The exams here shows he has a healthy heard, but the rare thing is that this is his second episode.

Will be great to have the Dr. Name we may send his records for his opinion too. I will get into the site you had send me

Thanks a lot,

 anything else let us know

Pilar confused


heartmom
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Date Joined Aug 2006
Total Posts : 9
   Posted 8/31/2006 12:49 PM (GMT -7)   
Good, where are you located? As I said this doctor is in Atlanta. Dr. Robert M. Campbell at Sibley Heart Center at Children's Healthcare of Atlanta (i.e., Scottish Rite Children's Hospital). You can not go wrong with contacting him.

heartmom
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/3/2006 7:36 AM (GMT -7)   
Haven't heard anything from you in a few days, how is he doing? Were you able to find out any information?
Heartmom

Pilar
New Member


Date Joined Aug 2006
Total Posts : 10
   Posted 9/4/2006 4:59 PM (GMT -7)   

:-) Hello Heartmom, Thanks for your info regarding the DR. in Atlanta. I may send my son’s records to him. He is ok, is medicated for the moment .We were out of town without computer that why I didn’t response to you.

Let me tell you that I had talk to his local cardiologist and mention your experience with your daughter, he said that it is possible that my son has some type of syndrome similar as yours, but he will need the electrophysiological studies to define if is and confirm that type and were, also I had send his record to 2 Drs. Pediatric cardiologist and electrophysiology’s, one in Cleveland Clinic Ohio and another in Miami Children Hospital in Florida. I’m waiting answer tomorrow and Wednesday from them. Is hard to wait and wait for answers. We’re in the Dominican Republic and we don't have that type of specialist in our country.

Thanks again for your comments, it has been really good help

I will keep you inform

Pilar :-)


heartmom
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Date Joined Aug 2006
Total Posts : 9
   Posted 9/7/2006 6:10 AM (GMT -7)   
That is great news! I hope that everything will be alright. It is very hard waiting for answers, especially when it is your child. I never knew how hard it would be emotionally. You will make it through the other side! I look at our daughter now; and I would have never known something so terrible happened to her. She still goes to her cardiologist every year to make sure she is still fine and she is! You and your family will be ok. Just keep looking for a doctor that will listen and do every test they can. It will be hard, but if they find the answer, it will be alright.
It was so very easy to detect, if the doctor is educated and knowledgeable about Wolff-Parkinson-White (WPW) Syndrome and it can be fixed, or it was able to be fixed with our daughter. I hope the same for you. You and your family are thought of often and in our prayers. Please have a great day and don't give up.
Talk to you soon and keep me updated, this is very close to my heart!

Heartmom

Pilar
New Member


Date Joined Aug 2006
Total Posts : 10
   Posted 9/7/2006 4:23 PM (GMT -7)   

Hello heartmom, thanks very much for your support, We have 2 opinions today from 2 pediatric cardiologys and electrophisiology doctors. and I have appointments to see one of them in Miami Children Hospital on sep 27...we're talking tonight with his local cardiologist and pediatrician about all the questions we have???? We have so much faith in God that I fell some tranquility ...I had talk to the DR. In Miami and he gave me light and understanding about his case.....I really hope everything will be solve with him and continue with his normal active life...now he is on some kind of hold in his sport activities but I really want this to get over and get solve as you did. Do they perform ablation on your child?if is yes, at what age?

Definitely I will keep you inform. I feel you as a friend already !!!

thanks again :-)

Pilar


heartmom
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Date Joined Aug 2006
Total Posts : 9
   Posted 9/8/2006 5:37 AM (GMT -7)   
Our daughter was diagnosed with WPW when she was 8 months old, but the equipment to do the surgery was not available to us for her surgery until she was 17 months old.  She was put on a medication "INDEROL" for 9 months.  At the time of surgery she was in congestive heart failure and her liver and lungs were starting to fail.  Dr. Campbell did the surgery at 17 months old and she has been great ever since.  They did the surgery with very "Radio Frequency Ablation" and the instruments were so small, she came home with only band-aids.  She was the only infant that had been diagnosed at this age.  Normally it is something that is not diagnosed until they are older (like your sons' age).  We have been on local news stations and medical reports and newspapers in Atlanta, Georgia.  The 9 months leading up to her surgery were the hardest because we did not know what the outcome would be for her or if she would make it at all.  Her heart rate would go up to 280 beats per minute.  So fast you could not count the beats.  confused We still have her stethoscope....and she is almost 7 years old.  It must be a mommy thing.
 
I consider you a friend also!!  It is very hard dealing with something that you can not see, and even when the doctors talked to us about it, it was hard to understand.  Everything will be alright.  I am here for you and your family.
 
What kind of sports does your son like to play?  Our daughter was too little to play sports at the time she was sick, but now you can't keep her from playing soccer or running around!! tongue
 
Please keep me informed, I would love to know what the doctors say.  And please don't forget about Dr. Campbell, he is the best and so calming and reassuring.  He made the entire situation bareable for her and us also.  He was like an angel for us.
 
Talk to you soon - Heartmom

Pilar
New Member


Date Joined Aug 2006
Total Posts : 10
   Posted 9/13/2006 7:29 PM (GMT -7)   

Hello heartmom: :-)

To keep you inform about my kid,he is 13years ols purple belt in Karate-do and Squash player, also great on waveboard , kneeboard water ski.....love water sports and we go  to the beach every weekend, we're very active and outdoor family...we life in the Domincan Republic.(Caribbean)That the most importan reason for us to find the problen and to solve it if is possible because his quality of life,we will like to keep being healthy and normal as it is.We found a Dr, in The Miami Children Hospital that is an expert on cases like him, since he has a normal heart ,the rare is that he presented 2 episodes at his 13 of age.We have appointments to take my son to see him in 11 days , we had spoke to him and gave us some tranquility in the options he can gave us to his case...I will keep you inform when I come back (oct-1) I pray to God and also trust him that all hat will be done will be for the best.

Thanks for your support I really appreciate. :-)

We have a positive mind but at the same time very nervous about it

Pilar


heartmom
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 9/25/2006 6:36 AM (GMT -7)   
Hi Pilar!!  It has been a few days since you have given any updates.  Is everything ok?  How about the doctor in Atlanta, Georgia (USA) have you been able to speak with anyone?  Keep me posted.  Thanks and hoping for the best!!  Heartmom tongue

Pilar
New Member


Date Joined Aug 2006
Total Posts : 10
   Posted 10/10/2006 5:23 PM (GMT -7)   
:-)  HELLO HEARTMOM: Let me update you, we just came from Miami, we took my son Luis to an specialist in The Miami Children Hospital he is a pediatric cardiology and electrophisiology Doctor, he saw Luis and had an electrophisiology study done on him, they found an abnormality in his elctro conductivity in one area of his heart and performed an ablation....Ufffffff ...we're so happy that he did something to solve the anormality, It was a great Doctor.... tongue Luis is back to his normal life at home, he is FREE of medication and his heart rate is normal..........
I will keep you inform.
THANKS again for all your concern.
regards,
 
Pilar
 

heartmom
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 10/11/2006 5:29 AM (GMT -7)   

tongue   Hello Pilar!!  I am so excited that everything went great!!!  Did they give you a name for his abnormality?  I just knew there was going to be light at the end of the tunnel for you and your family.  That is wonderful that you found a doctor to help Luis!!  I just knew that there was a doctor out there that knew how to correct the abnormality.  It is amazing to know that technology has come so far in twenty years.  And thank God for that!!

Please keep me updated and let me know how Luis is doing.  Is he home now?  And what did the doctors say about checking on him?  Is he back at school?  And the big question, is he happy and feeling better??!! :-)

Thanks for your friendship, maybe one day we can have our children meet?  They do share something that most people at their age do not.  Also, our families share the same!

Keep in touch - Heartmom


Pilar
New Member


Date Joined Aug 2006
Total Posts : 10
   Posted 10/17/2006 3:29 PM (GMT -7)   

Hello heatrmom, Thank you...thank  you ....I will tell you that Luis in back to all his normal activities sport and school too,This EKG is completely normal

Will be great to meet you and the kids too...were are you ???I may visit some time.

will be great to keep talking...... Do you want me to send you my email?

thanks again

Pilar


heartmom
New Member


Date Joined Aug 2006
Total Posts : 9
   Posted 10/18/2006 4:48 AM (GMT -7)   

It is just wonderful to know that we have our children back!!!  I know that I look at Lindsey everyday and just thank God and the doctors that she is running and playing like all of her other 6 year old friends!!

We live in Cartersville, Georgia just north of Atlanta.  I met a nurse last night that works at a hospital here in Atlanta and she was just amazed that Lindsey was diagnosed at 8 months old.  She said she had never met someone that made it at that young of an age.

Yes, we can share emails, my email is kfll@adelphia.net

and you can contact me anytime or even Luis can email me.

It is wonderful that someone else in the world can relate to what we have been through.  I believe that there are not many of us since this is a very hard diagnosis with children and there are some that have not made it on the other side.  We have made it to the other side and I know that we are blessed! tongue Talk to you soon!!

Heartmom

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