This is a forum for parents and kids with ICDs. Discuss issues unique to parents and kids, or just hang out with some newfound friends!

Moderator: Momof2HeartKids

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Post by Shelby » November 30th, 2005, 10:29 pm

Hi all,
Let's post our introductions here so we can all get to know each other. If you'd like to include a picture, just send it to Don at and he'll link it in--or if you're already computer savvy, post it yourself!

I'll start--I'm Shelby, age 32, no kids--although I was a kid once ;). I'll be stopping by every once in a while to moderate things so if you're eating chocolate for dinner or starting a pillow fight, I'm the bad guy. Oh who am I kidding? I'll just join right in!

I hope you find this forum helpful, and don't forget to pop into our Main Forum for great advice and information.

Love your cruise director,

(here I am with a dog toy my beagle just destroyed)
Afraid to post here? Remember:
"Some people think only intellect counts...but the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~Dean Koontz

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Post by Momof2HeartKids » December 6th, 2005, 10:38 am

Hi My Name is Cyndie and myself and 2 of my 3 beautiful children have Brugada. Brugada is a sudden death syndrome similar to Long QT. All 3 of us have ICDs and you can read more of my intro under the main forum if you would like. I am happy to be a modeterator for our moms, dads and kids site and I am hoping we can start a happy family here and be of support to each other! Please feel free to voice your questions and concerns or just chat anytime you would like!!! 8)
Wishing You a Zap Free Day,

(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)



Post by katie&hearts » December 9th, 2005, 1:40 pm

hi im Katelyn, my friends call me Katie, Im 16 and my mom Cyndie - Momof2HeartKids - is the moderator of this site. I have a sudden death syndrome called Brugada and I have an ICD implant. Besides my 6year old brother and my mom I dont know anyone else who has Brugada or an ICD except my one teacher. Im very intereseted in talking to other teenagers with ICDs or pacemakers and anyone with Brugada or other sudden death disease like Long QT and heart related diseases. I had my ICD implanted last December, so Ive had my ICD for just over a year. I am very educated by my mom and doctors about my disease and Implantable defibrillators. Im interested in talking to other teenagers and children who are having a difficult time understanding or coping with their disease or getting an ICD. Ive had heart related problems as long as i can remember and through out my life have been resticted from many things. Ive had an interesting and scary journey. Four years ago I had an ablation done (for anyone who is unfamilar with what that is: catheter (a tube) with a balloon like tip on it was insertd into my heart and the tip then zaps (or kinda burns) the bad tissue where the arrythmias were coming from in my heart) after this ablation I seemed to have no more heart complications but a year later I had one of my many 24 hour heart monitors on and everything was normal I had no episodes when i had it on, but when my doctor got it back he called my mom and said i needed to be brought to the emergency room imedietly. The next morning I was a few hours away from getting a ICD when my doctor came in mad and said I was just about to have a surgery i didnt need. The persons information who wore the holter before me never got deleated and mine never got recorded. The only thing that clued the doctor into the fact that it wasnt mine was that child already had an ICD because it shocked him during a v-tach episode. I couldnt believe it. Since then the system has been changed so that cant happen again. Once again my life seemed normal until the genetic testing was finished (2 years after the mess up) the doctors found out I did actually need a ICD anyways. I only found this out a week before my surgery and it was very scary :( i did not want a defibulator AT ALL! But since Ive had it I know its there to save my life God forbid anything happens! Like my mom always says to me: " its like an emergency room in my chest" . Some days thinking about it gets me mad and upset again and feeling the bump where it is gets me upset and I feel not normal. I realize i am not normal what happend to me and my family is not normal but before I had it I thought my life would be ruined. Im not the most popular girl at my school but i do have alot of friends and a great boyfriend. I thought everyone would look at me diffrent once i got my ICD. :cry: but nothing had changed like i was so sure it would. Im still with my boyfreind and I seem to make more friends every week. :D when i first got my ICD it was always on my mind but since then I can go days without thinking about it. I used to hide my story form every one at my school but im now very open about my experiences and I realize I can really help some people who are going through the emotions I went and still am going through. Two months ago I had to have another surgery beacause my ICD dropped into my breast tissue and was very painful so i had to get it moved under the muscle this time. It felt like I had another ICD put in and since it was under the muscle it was more painful then the frist time, that was in early october, now im back to my new normal already and i feel great! I know its not easy and having two other people have the same problems in my immediate family makes days eaiser because they know what its like and can help on the bad days! I would now like to help ANYONE who feels noone knows what their going through! So please feel free to ask me anything or just talk anytime!!! :wink:
xoxo Katie&hearts!!!![/url][/list][/list][/code][/quote][/u][/i]


Guess I will introduce myself here

Post by cocoalab1 » December 14th, 2005, 12:27 am

I'm the mom of three boys. The oldest has a heart defect and had his second open heart surgery last June. He had a few complications like a MI (heart attack) during that surgery and a little trouble starting his heart afterwards, and it took a few days before he came off the vent. But all things considered he had a good recovery from his second valve replacement surgery. They watched him carefully for v- tachs while we were there because he had some problems with that during surgery.

We came home and after a bit, recovery seemed to be going fine. He had a follow up visit and a holter and all looked good. A few weeks later he went back to school for the first day and collapsed on the black top. He was revived with an AED which thank God our school had. He was in v-tach of over 280 I believe, and was succesfully shocked into a normal but fast rythem with one shock.

I work at his school so was told he was not doing well and I arrived by his side about the time I saw the ambulance arrive. That was the first time I realized he was in serious trouble. We rode to a local hospital and then he was transported by Ambulance to Children's where he had had his surgery.

Andrew was in PICU for 5 days as they assesed his heart damage from the previous MI and had to decide whether to open him up again to do a bypass. It had only been about 8 weeks since his last surgery. All this was complicated because he could not have an MRI due to pacemaker wires implanted for future use. They were able to make arrangements for a nuclear scan test which unfortunately showed the damamge was irreversible so a by pass would not help.

Afraid this has gotten a bit long, :oops: sorry! Andrew had also had a heart cath and EP study which convinced them that he should not leave with out an ICD. He was very easily induced into v tach and had to be shocked out twice.

This has been quite a year for him, well for all of us. :o I also have two heart healthy sons and my dear husband. Andrew is 16 just last month. He has had one shock from his device so far. His brothers are 14, and just 12- 3 days ago.

May you have a wonderful Christmas and happy holidays. :D


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Re: introduction

Post by Tim » December 14th, 2005, 6:45 am

katie&hearts wrote: Im very intereseted in talking to other teenagers with ICDs or pacemakers and anyone with Brugada or other sudden death disease like Long QT and heart related diseases.
Hi Katie,

The UK Cardiomyopathy Association is looking to put young people with ICD's/SCD diseases in touch with each other. If you'd like to email Stephanie at the CMA I'm sure she could help. Have a look here:- ... .php?t=618


Edit: - oops, sorry Shelby. Didn't mean to post this in the Katie hasn't registered & I can't PM this, any chance of leaving for a few days and then deleting? Thanks.

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Post by Nyone » December 22nd, 2005, 2:56 pm

I'm the mom of 2 kids, Marisa (9yo) and Mitchell (6yo) and have been diagnosed with long QT syndrome since my respiratory arrest at a lake while camping in July 2004. I have a St Jude ICD and have had 1 shock, however I did not feel it so I assumed I was a bit obtunded when it happened. I guess I should feel greatful that I lost consciousness but that lead to 6 months of no driving, which was NOT worth it.

Anyway, since long QT is usually genetic, my kids need to have exercise ECGs yearly and they are both considered borderline (which means nothing!) and are both on prophylactic beta-blockers. Ive had genetic testing so that I can rule-out the disease with my kids but unfortunately my test came back negative which doesn't tell me that I don't have it, but that I can't test my kids yet.

I'm still unsure about my diagnosis because I have a slight cardiomyopathy that is not consistent with long QT so I'm having other tests to find out if something else could be prolonging my QT interval or causing my arrhythmias. I do have a Brugada like wave in one of my leads on the ECG and will be getting EP testing to rule that out. I've also had an AVNRT ablated so it wouldn't cause inappropriate shocks from my ICD.

Thanks for starting this group, Shelby and Cyndie

Nancy Y

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Re: Introductions

Post by zmom » January 18th, 2010, 8:04 am

I previously posted on the main broad but thinks this is where I also needed to do an intro. My name is Janet. My son has a St Jude ICD since 2007. He was 13 years old when he had a cardiac arrest at school. When he was 8 years old he had a fainting episode during gym class and again during recess. After numerous tests he was diagnosised with "syncope". It wasn't until age 10 that he was diagnosised with VT. This came about after a fainting episode during swim class. We finally found a cardiologist to perform a stress test to appease his mother. The stress test indicated ventricular tachycardia and he started taking Atenolol (beta blocker). Future testing by a holter monitor continued to show PVCs. The doctor suggested genetic testing at the Mayo Clinic for CPVT (catecholamine polymorphic ventricular tachycardia), which we were told could take several years to get the results. In October 2007, we took Zack to an EP doctor to see if ablation would fix his VT. He was put on a calcium channel blocker 5 days later he suffered cardiac arrest. His science teacher performed CPR until the school's nurse arrived with an AED. When the ambulance arrived for transport he aspirated his lunch into his lungs. At the hospital he struggled to survive since he developed aspirated pneumonia along with his heart condition. He became a "miracle" and once his condition stabilized the EP doctor did a study and found that epinephrine caused his heart to go into VF. He implanted an ICD/pacemaker and prescribed 100mg Toprol XL. He was diagnosised with CPVT even though the results from Mayo Clinic had not come back yet. His cardiologist wanted to perform a stress for follow-up but Zack developed stenosis (scar tissue in his trachea from the ventilator tube) which closed his trachea 75%. He had numerous dilatation surgeries to widen the opening until in 2008 it finally stabilized. Two stress tests continue to show PVCs and couplets. He now takes Toprol XL 100 at 7 am and noon but still has PVCs and couplets when his heart rate reaches 105-107. Activities are restricted and he has had a hard time dealing with it especially when peers don't understand his condition. He looks strong and healthy on the outside other kids just don't understand. Need advice on adjusting!
Janet "ZMom"
Mother of 16 yr old son with
St Jude Medical V168 ICD and
Ventricular Tachycardia (VT) with CPVT
Zack's motto:
"Making mistakes simply means you are learning faster"

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Re: Introductions

Post by ICDkid » February 26th, 2010, 12:14 am

Hi there, my name is Sharon. I am the mom to Garrett. Garrett is now 12. His insides are reversed and his heart is on the right. He had VSD, ASD and PDA at birth. Everything was repaired in 1998 except for a slight VSD that could not be repaired. Flash forward to Feb. 2009. Garrett was running to get something from his room and he suffered SCD. Paramedics arrived and shocked him twice. Went to one hospital and then he was airlifted to CHLA, then tranx to Kaiser Sunset. Was told he wasn't going to make it, then told he would have a low level of life and would never walk, talk or eat again due to the brain damage, then they would do an ICD if he became a candidate for it,then got him into rehab where he walked, started talking and passed a swallow test! He was then a candidate for the ICD and now here we are, at home, just about one year later home from the hospital. He suffered what they think V-Fib due to the previous heart surgery when he was a baby. It is a higher percentage of SCD for people who have had surgery. The scar tissues can sometimes activate v-fib. Not always, but there is about a 30-40% chance. Numbers may be less, but that is the average. Garrett is in 7th grade in special ed, he has an aid and he is ranked 175 out of 656 kids with his GPA. His GPA does count even though he is in special ed. This is a child with brain damage, not injury. There is a difference. Before this, he was in the GATE program at school and also has Asperger's Syndrome. And just to make it even better, he does have a cleft lip and a slight cleft palate. That comes from me though. The heart issue, well, we aren't too sure. Like the other parents here, he is quite the miracle. I would love to talk to the moms, dads, actual kids regarding this. This is a wonderful thought. I applaud Cindy's daughter for writing how she feels. That is so cool. Forgive me about not remembering your name, for my brain seems to be made of swiss cheese lately. (plus I don't know how to go back and look without loosing this!)
God's Blessings to all!
Garrett's mom
Garrett's mom
Orange County, CA

"God only gives us what we can handle, I just wish he didn't trust me so much!"
~Mother Theresa

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Re: Introductions

Post by Kat » February 26th, 2010, 12:36 pm

Just a note to those posting here, the first post in this thread was from 2005 and since then there have been several changes.

1. We have started the introduction thread on the main forum. This way, the whole board family gets to meet you.
2. If you want to post a picture use an online service like or Or contact one of the board moderators to help you out.

Other than that, post on family people! :)
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: ... 5694#p5694


Re: Introductions

Post by aebales00 » November 30th, 2010, 10:41 pm

Hi everyone. My name is Amanda. I am the mother of 4 children, Aj (12 Long QT Syndrome), Joshua (9 Long QT Syndrome), Hayden (7) and Avery (4). Aj and Joshua were both diagnosed with Long QT in June of this year. Due to other health conditions that they both have, which require medications that put them at a higher risk for cardiac events we chose to have ICDs implanted in both of the boys on November 11th, 2010. Their ICDs are in their abdomens, rather than their pecks. Joshua's had to be repositioned 11 days later because of a low R wave reading. They are both doing very well now, but it has been an emotioal rollercoaster for us all. Aj doesn't like to talk about the Long QT or ICD. I am hoping to get some advice and support from other families who understand what this is like.

Take care.


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