looking for info on CPVT and ICD

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cocoalab
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Location: northern Chicago suburb

Re: looking for info on CPVT and ICD

Post by cocoalab » March 16th, 2010, 2:54 pm

Hello Zaks mom,
My name is Wendy and I have a son who has had an ICD since he was 14 as well. Unbelievably he is 20 now and doing very well. He suffered a cardiac arrest at school also and had an AED used on him. He had had open heart surgery 6 weeks prior to this event due to a congenital heart defect he has.

Anyways the reason I am posting here is to agree that Beta blockers do make people tired. I don't think that is even debatable. I think many people adjust to the medication but Andrew has been on one beta blocker or another for several years and he still says it makes him tired. Also he complains that it is hard to lose weight or even stay the same due to the slower metabolism. Understandably his heart rate was quite high as a child / young teen averaging 100 bpm at his 13 year checkup and now is paced mostly to keep him at 70.

Not being able to participate in sports is pretty hard for most boys. Andrew was able to participate somewhat by doing the book for the basketball teams. That way he got to go to the games and be with the guys. He would have loved to play but that's life. He is in college now and does stats and book for the school now also. He was able to fly to conneticut and be a part of the team with them. I think its important to find some niche that he can be a part of. It sounds like you are doing alot to help Zach do all he can with his sports. That's great! :D highschool can be tough. college I think is easier.


Well I think I have blabbed enough. I don't check in as much as i should but I will be around a little more again. glad to meet you and hope that you get all you questions answered. this is a great place.

Wendy
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

*karenb*
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Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK

Re: looking for info on CPVT and ICD

Post by *karenb* » March 20th, 2010, 1:19 am

Hi Wendy,

Its good to meet you. I'm really pleased that Andrew is doing so well now. I think you've given some great advice too.

Karen
CPVT
First ICD 2004.
Current ICD implanted 09/06

cocoalab
Posts: 425
Joined: December 16th, 2005, 3:17 pm
Location: northern Chicago suburb

Re: looking for info on CPVT and ICD

Post by cocoalab » March 20th, 2010, 4:35 pm

Thanks,
glad to meet you too!
Wendy: Andrew's mom(23, L-TGA (ventricular inversion), tricuspid valve replaced 3x-7/96 and 7/05, 6/07 and mitral valve 6/07, MI at last surgery, cardiac arrest August 05, ICD 8/27/05, Bacterial Endocarditis requiring replacement of two valves and his ICD May through July 07) L-VAD 12/7/2010, on the transplant list since April 2011! Rom 4:5 But to him that worketh not, but believeth on Him that justifies the ungodly, his faith is counted for righteosness

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Clover
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Re: looking for info on CPVT and ICD

Post by Clover » November 4th, 2010, 10:27 am

It's been a while since this thread was active, but wondering if any moms/dads still posting. Genetic testing has confirmed my diagnosis of CPVT ( I already have an ICD) but now I have learned that my two boys have the same mutation. At this point the are asymptomatic and have a stress test today (and will have one once a year going forward). They will be started on a beta blocker today as well.

This is going to change our lives in one huge way. One of my son's also has ADD/ADHD and was taken off his medication (which he can now never go back on) about a month ago and went from and A/B student to failing. His school has been great and is working with us, and we have a 504 in place. Even with all of this, we are tackling this one day at a time. From what I hear, the beta blockers may actually make this worse. Not that we have a choice though. Any information and help on this topic (kids on beta blockers, working with the school ,and having a cardiac channelopathy and ADD/ADHD) is much appreciated.

I have set an appointment for a second opinion with Dr. Ackerman at the Mayo in Rochester in March next year. I keep finding that he is the expert in this field.
St Jude "Fortify" ICD- 7/27/10
Polymorphic Ventricular Tachycardia
CPVT diagnosis (Class II Variant on the RyR2)
No longer in denial of my condition
VT successfully converted to sinus via ATP on 7/28/2011


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freckles1880
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Re: looking for info on CPVT and ICD

Post by freckles1880 » November 4th, 2010, 3:46 pm

I do not have your condition and thank God my kids don't either. BUT I have read so much about our children "dying on the field" as such and how many could have been prevented by education and PROPER physicals I am saddened. I don't think we need to over implant our youth, but in some cases it is necessary to save their lives. Getting good advise from the medical field is number one, then you need to help them make the correct decision. I am so sorry you are in this boat but rather you know now than later. This is for all of you. :hugg:
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

zmom
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Re: looking for info on CPVT and ICD

Post by zmom » November 17th, 2010, 1:50 pm

Hi Clover,
Haven't checked in for some time and happened upon this posting. I was happy to see that you do have an appointment with Mayo -Dr. Ackerman. The Mayo Clinic has been testing Zack's blood since 2007. I have periodically checked with them (in Jan. 2009) results at that time were negative. I recently called there a month ago and was told that they were "hot on the trail" of a new mutuation and we should have confirmatory results in a few months. Zack has a sister who at this time does not show signs of CPVT. Cardio has performed 2 stress tests that show no symptons. However, if Zack's test are positive, I'm assuming they'll want to test her genetics. I'll be interested in hearing how or what treatment Dr. Ackerman recommends for your family. I was under the impression that once a mutuation is found the rest of the family can be tested and if they have negative results then they are CPVT free. Until your appointment, I'll be hoping things work out for you and your family. I know it is very hard for kids especially when the rest of the "community" doesn't understand CPVT and how it affects each person.

Have a wonderful Thanksgiving!
:gobble:
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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Greg a
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Re: looking for info on CPVT and ICD

Post by Greg a » November 17th, 2010, 4:12 pm

More from the introduction thread by Janet...

zmom wrote:My name is Janet, I go by zmom since I'm the mom of Zack. 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!
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