Hi Everyone....found this board through Google...been a tough 30 days or so...the short story is I found my 6 year old on the garage floor after he went to get his school bag after dinner....went through a bunch of tests that were all negative.......follow up the the pediatrician who (thank god) ordered a Holter monitor...my son went through a stress test on Friday and it there is a strong suspicion he has CPVT based on the resutls....needless to say, I was devastated....I like to think I can take just about anything, but this has got me reeling...I have a 2nd opinion on Dec 1 and we are confirming if the insurance will pay for the blood test.........just looking for feedback from parents and people living with this condition...it seems the prognosis is decent when discovered in time...they have him on the beta blockers and I am hoping that it ends with that..my impression is there are gradations of this condition.......anyway, good and bad, I would like some input...want a realistic picture of what I am dealing with...thanks
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CPVT
- By jdm111
- Posted November 3, 2009 at 7:03 pm · 3 replies
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- By Jetchicky
- Posted November 4, 2009 at 7:54 am
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Hello,
I have CPVT with my first episode when I was about 10 years old. I am now 33. My mom and her dad more than likely had it too. They passed away years ago, without ever knowing it though. I too have a child who has not had any problems yet, but is already getting checked (she is only 1.5 years old). CPVT is a dangerous disease, but you are very lucky that it was caught and he is being treated. There is a genetic test for the disease and I came across a wonderful foundation that will help with paying for the tests, if your insurance doesn't cover all of it.
http://www.hannahwernkememorialfoundation.com
I hate to hear that any child has this issue. It is a pretty aggressive problem that sometimes breaks through the betablocker, so usually an ICD is suggested. This monitors his heart constantly and will deliver therapy, if needed. Please email me if you have anymore questions. I can give you the lowdown about living with the disease on a daily basis. It IS possible for him to go on and live a normal life. However if it is found it that he does have this it is a genetic problem, so the rest of the family might want to get checked out. Good luck!
- By latteda
- Posted November 5, 2009 at 5:50 am
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Dear jdm111
I am very sorry to hear what you are going through with your son it is a story all too familiar with our family. My story is very long and i don't know if it would help for you to talk to somebody over the phone about this? I know i would of loved someone that could of helped me two years ago or somewhat steer me in the right direction. My son too collapsed at the age of eight two and a half years ago. He was diagnosed with CPVT last November. We are very positive people in general but I cannot stress enough on how serious this heart disease is and it needs to be treated in that way. It is a very rare arrythmia problem that many people have not even heard of. Some parents do not get a warning like we have had like collapsing. Alot of parents find out when their child collapses and dies and they then have an autopsy done to determine the death on what they thought was a perfectly healthy child. They call CPVT the perfect silent asassin on the heart because structurally everything appears fine and ok when it isn't. ( i have heard and read to many sad stories about it). Please email me at latteda@hotmail.com and i will phone you or email you my number. My name is Sarah and we live on the suncoast of Florida.
- By chrismarch03
- Posted November 5, 2009 at 3:06 pm
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Sorry to hear about your son but you were so lucky to be there when he collapsed. Our 16-year old son collapsed 18 months at school and was revived with an AED. He spent two weeks in an ICU and came home with an ICD. He currently takes beta blockers and a calcium channel blocker on a daily basis. Our son is happy and living his life to the fullest. While he obviously has to be careful and stay away from some activities and sports, he plays tennis and golf on a regular basis and lives a full, normal life. While we were worried about the side effects of the beta blockers, he has adjusted to these effects and does very well in school. He feels so lucky to be alive and really appreciates his life now. He is even organizing an AED fundraiser for his Eagle Project. While we still worry about him and his health, we feel so lucky to have him in our lives and are very optimistic that he will live a long, normal, happy life. Our family was all tested for CPVT (covered by insurance) but it turns out that he has the only mutation (not passed down from us). Be sure to have the genetic testing done as soon as possible to confirm the diagnosis and to make sure that family members are not at risk.
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